Healthcare Communication is an interactive and engaging guide to establishing professional, practical and rewarding relationships which will support therapy and enhance patient health, safety and morale.
It offers a challenging vision for excellent healthcare delivery. An important part of a healthcare professional's job is to communicate successfully with their patients.
This text provides:
- in-depth analysis and discussion allowing readers to gain a deeper knowledge and understanding of a range of relationships and communications
- examples and suggestions of how and what to do in healthcare relationships to handle patient and other relationships effectively
- tips for managing difficult people, establishing effective teams and running productive meetings
- discussion topics, exercises and a range of observational projects
- entertaining illustrations and quotations
Healthcare Communication will be of interest to everyone working in healthcare, especially doctors, nurses and pharmacists in training and in practice and will have relevance to all roles, medical and non-medical.
Healthcare Communication is also available as an ebook.
- Request inspection copy »
- ISBN 978 0 85369 749 7
- Published Apr 2009
246 x 189mm (320pp)
Case Studies - Introduction
In this section, there are six very diverse stories about patient experiences, all of which raise important issues about quality of care and effectiveness of communications. They are all based on real-life experiences told to the author. The exact factual accuracy of medical detail has not been verified, but the dilemmas and problems are authentic, and raise important and interesting issues - particularly with regard to the ways in which things can go wrong and patients can be unnecessarily distressed.
You may find them useful for discussion among colleagues or for reflection and analysis on your own.
Dying from AIDS: anecdotes from two provincial hospitals in south-east Asia
This is an iconic story of the failure of healthcare to fulfill its potential as healing for the whole person, and to provide what is described in the book as a good death. In this culture, in this place, no-one is working less than hard; no-one is intending to do less than their best; no-one wants to diminish or damage patients, but at nearly every point, largely well-meaning professionals fall short in empathy and compassion, and in engagement with the patient and his family. Communication, even at a very modest level, does not feature in their armamentarium of knowledge, resources and skills.
In what may seem like a distant culture, perhaps we can see more clearly what is amiss. While there are many places where healthcare is vastly superior to what you see in this story (some of them in the same country), there are also many, all over the world, where some or all of the same failures are commonplace. Some of the cultural features exaggerate some of the problems, but the essential issues are relevant everywhere.
The patient is a 34 year-old male with AIDS. His grossest afflictions include: cirrhosis of the liver; Hepatitis C; pneumocystis carinii pneumonia (PCP); extensive Kaposi sarcoma on his face and small patches elsewhere; severe candidiasis in throat; severe loss of weight, stick-like limbs, distension of the stomach. All symptoms are well advanced, as he refused to take medical advice until his condition weakened him to the point he could barely eat or walk (probably up to a year's neglect). His elderly mother and niece, from a remote rural village, have come to take care of him.
- After admission to the first hospital, on the whole, nursing care was brisk and task-focussed, sometimes gentle and considerate, but, in the main a rapid production-line routine in a very busy public ward.
- Multiple therapies were adopted, all aggressively pharmaceutical, and requiring the swallowing of dozens of pills a day, to the patient's extreme discomfort. The tablets were left on the table by the bed for the patient and family to manage on their own.
- Lots of blood and other samples were taken without explanation or passing back results and conclusions.
- Mother and niece were at no time offered support or explanation, or brought into any of the discussions round the bed. On arrival they had been completely ignored.
- An educated friend of the patient, who wanted to find out what was happening, asked if the doctor could be contacted; nurse's answer: 'No.' Could the doctor phone if a number was left? 'No.' The alternative was to wait around until the doctor came on the ward (which could have been any time during the working day.)
- No-one talked to the patient or family about the seriousness of the situation (though it was clearly serious, and, therefore, deeply worrying), nor about the almost certain death of the patient in the near future.
- The various symptoms and diseases were not discussed specifically with the patient or the family, nor were any prognostic opinions offered. The diseases are only known about because an assertive third party insisted on being told.
- After three days, while still barely able to raise himself off the bed, and with no evident improvement since admission, he was discharged home with eight sets of pills, some of them very large, with an appointment a fortnight ahead. Parenteral dextrose and salt, and oxygen, which he'd had throughout his stay, were discontinued. No explanation was given for the discharge, nor about what might constitute cause for an early return.
- While he was waiting for the discharge medications, sitting in a wheelchair, an orderly, without a word, came and whisked him out of the ward to the waiting car, long before the end of the two hours it took for the meds to arrive. (The patient was deeply upset by this wordless assault on his personal freedom, as he remarked when his family wheeled him back to the ward again.)
- Back home his condition deteriorated quickly; he was able to eat and drink little, and began to vomit back the multiplicity of pills.
- Friends took him urgently to the A&E department of another hospital.
- He was compassionately attended to, though his mother and niece were again ignored. They, however, remained silent and undemanding as the team went about their business, and showed no expectation of being involved.
- In the X-ray department, where the patient was waiting on a gurney, the technician approached the gurney at the head-end (where, with head slightly elevated, the patient could not see him) and wheeled it rapidly away without a word.
- After the X-ray, the technician shoved the gurney back into the waiting area so that it freewheeled and came to a stop on its own. (This could be a truly terrifying experience for a helpless patient.)
- The on-duty junior doctor (this was late evening) was evidently overcome by the complexity of the case and appeared to give a quite brutal physical examination, including slapping the bloated stomach and insisting on wide opening of the mouth (to examine the throat with a fading torch), which the extensive Kaposi made virtually impossible for the patient to do voluntarily.
On the other hand, in the second hospital:
- A porter went out of his way to find a trolley, which he wheeled out to bring in the patient's and family's belonging from the car, parked far off in the car park (families often bed down and stay with their relatives round the clock).
- Individual nurses were sweet and gentle (though their focus was entirely on physical tasks, and their concentration solely on the patient).
- Recognising the extreme difficulty the patient was having with swallowing pills, nurses helped him slowly with them one by one, bringing cool water in a glass and a straw.
- One or two of the doctors did talk generally about the patient's comfort and sense of wellbeing as one of their concerns (rather than solely aggressive treatment of individual symptoms).
- One of the doctors in the second hospital, went as far as to express his view to the patient's friend that the situation was 'serious' and he would think carefully about what the therapeutic and personal care priorities were (but this would not have been shared with the patient or the family).
- In the public male medical ward, staff were struggling with overwhelming numbers of patients, in beds close together in the ward and in the corridors. With no air-conditioning, it was very hot; the fabric of the ward was shabby and there were ants. The nurses were elegantly turned out in pristine uniforms. If you insisted on their attention, you got it briefly and coolly; they went about their business unsmilingly.
- With no other reform whatsoever, the experience would have been transformed if, while busily doing their work, they had smiled and chatted. In such a situation one could ask for little more, but that would have made all the difference to the patient, from being a malfunctioning specimen in a bed, to being a suffering person and to the family from being a sidelined irrelevance, to feeling valued as partners in care. (They stayed with him round the clock: massaging his limbs, placing cooling flannels on his face, trying to feed him and help him swallow his pills, washing him; helping him to the toilet when he could walk, helping him on the bed when he could not; chatting and comforting; amazing and beautiful devotion.)
- Few, if any, aspects of the doctors' thinking about the patient's condition or the possible therapies were shared at all. Absolutely no discussion was offered about options, risks, prognosis, consent (consent was limited to the signing of a generic form on admission). The patient and the family were the passive, accepting victims of whatever was decided.
- Some of the evident shortcomings are about culture and expectations. Patients and families in this country, especially the poor and ill-educated, do not expect to be involved; in a deferential culture people do not think to ask questions, seek explanations or challenge decisions from status superiors (which, in this context, include all medical or para-medical personnel). Status superiors do not think they owe explanations, or should engage in the exploratory activity of asking open questions, or indulge in small-talk.
- The story shows how the behaviour of non-medical staff can also impact seriously on the feelings of patients and their families: the X-ray technician had no pride in his job as a member of the healthcare team - he was a mere functionary concentrating only on getting good pictures - the patients (this patient, certainly) was just an object on a gurney to him. On the other hand, the helpful porter contributed greatly to a sense of welcome, security and goodwill.
- Important, radical improvements in a situation like this have nothing at all to do with resources of time, money, facilities or anything else: they are exclusively about the people doing their work with a different vision and attitude: simply - being compassionate and collaborative, and understanding that the quality of their communications and relationships with all patients and their families are at least as important as their medical or technical expertise.
The patient was moved to the ICU where he received medically remarkable and energetic care for nearly three weeks. Blind and unconscious for his last many days, he was eventually taken home by ambulance, where he died shortly afterwards.
A case of agonising choices
Later discussion in the ward with her (confirmed by a phone call with her community physician) revealed that epilepsy had been diagnosed in her late teens and that she had been prescribed medication since that time. In her early twenties, Stevens-Johnson syndrome emerged as a side-effect of her medication, and the regimen was changed after she recovered. She had had no epileptic episodes for seven years, and no recurrence of Stevens-Johnson syndrome or other side effects.
Unknown to her doctor, two or three years after her recovery from Stevens-Johnson syndrome, she had started her own research about anti-epileptics, and had been so alarmed by what she read about the risks that she had discontinued all medication, while continuing to collect her repeat prescriptions, half-thinking (as she said) that she might resume when the balance of her fears returned to the risks of further fits. Events had planted in her a mistrust of doctors: she claimed the risks of anti-epileptics had never been explained to her. Now the issues were deeply complicated by the new risk that an epileptic fit, and the medication to prevent it, might represent for her unborn child.
The outpatient physician saw this woman several times after she was discharged, slowly taking her through the options which might manage her physical condition, protect the foetus and deal with her now multiplying fears. She was well-informed about anti-epileptics, cross-reactivity, foetal health, and so on, and was demanding in terms of the information she wanted about risk. When the obstetrician said, 'Another fit will certainly kill the baby,' she asked, 'How certainly?' When one after another of the available anti-epileptics was discussed, she asked, 'How likely is foetal damage or an allergic reaction?' What is the chance of this happening to me?
Not surprisingly, the physician was not able to provide effective solid evidence about anything which would completely allay her fears or even offer confident risk figures. None of the commonly-accepted drugs available for treatment was without some known risks for this patient.
So: you may like to discuss the purely medical aspects of the treatment dilemmas in this case, and the best solution you would hope to negotiate with the patient. Those aspects of the case won't be dealt with here.
The communications challengesThink, for a few moments, about the challenges presented by this case for any physician in the front line, and any nurse or pharmacist in the second line.
What knowledge and skills would you need to accompany this patient on her journey from a potentially life-threatening event for her and her unborn baby, to a solution she would find satisfactory?
Here are some thoughts:
In light of the extensive knowledge needed in such a case, and of the patient's own considerable knowledge - a willingness to admit ignorance or uncertainty, and to research information and answers where they are available; willingness to live with uncertainty, and to help the patient do so, when good evidence is not available. To work in partnership on this journey.
Actions and skills
- A genuine grasp of this patient's unique trauma on her epilepsy diagnosis
- A genuine grasp of this patient's unique trauma on suffering Stevens-Johnson syndrome from medication she did not know carried a risk of such serious harm
- A genuine grasp of this patient's unique disillusionment with doctors and medicine and unquestioning acceptance of its authenticity
- A genuine grasp of this patient's continuous, long-term agonising about her lifetime medication for events about which the risk and seriousness for her, individually, were unknown
- A genuine grasp of this patient's unique feelings on surviving an event which was a serious threat to her life and that of her baby
- A genuine grasp of this patient's unique feelings about current or future damage to her child, and the impact of even consideration of abortion
- A genuine grasp of this patient's unique, painful dilemmas and competing needs in making treatment choices
- A genuine grasp of this patient's unique need for facts, certainty and the re-establishment of her trust in healthcare
- A genuine grasp of this patient's potentially negative reaction to transfer of her care to her previous community physician or any other
- Building the relationship
- Establishing credibility by taking the patient's perspective seriously
- Building trust by listening and moving at the patient's pace
- Demonstrating trustworthiness by openly sharing uncertainty
- Showing conscientiousness by offering a comprehensive range of genuine options
- Demonstrating empathy, understanding, concern
- Having all known information in mind or to hand, and providing as much as the patient needs, at a pace the patient can process
- Providing supporting information (e.g. leaflets) and alternative sources (e.g. second opinion or internet )
- With patient's permission, recommendation of physician's preferred option
- Risk communication
- Being able to make sense of such risk information as is available and putting it into language exactly matching the patient's abilities and needs
- Being able to weigh the evidence about different and inter-related risks and to make responsible judgements which can be represented plausibly to the patient
- Ability to moderate the patient's need for certainty and to investigate the levels of risk and uncertainty with which the patient is prepared to live
- Joint decision making
- Arriving at a treatment decision which the patient understands, accepts and agrees to
- Reviewing risks, early warnings and action to be taken
- Discussing future consultations and check-ups
- Preparation for discontinuation of outpatient relationship and transfer to community physician or other (if relevant)
The horrors of breastfeeding
The baby boy was not feeding early on, and the response to this by two nurses was rather brutally to shove the nipple into the baby's mouth and hold it there. The baby started feeding, but the mother experienced great pain, not much reassured by yet another nurse who told her that discomfort at first was not unusual. During her two days' stay in the delivery unit, her pain as intense as ever, the mother's problem was largely neglected by a total of ten different nurses, whose advice, such as it was, was various and contradictory. No-one attended to or addressed the question of the mother's pain; no-one stayed and watched her technique or the position of the baby in an effort to analyse the problem and teach her how to do the job.
After two days she returned home, where the pain continued and she shortly developed painful lesions; feeding the baby became an even worse nightmare.
The mother discovered that there was a specialist breastfeeding unit at the very hospital where she had been, and, after several phone calls and a couple of visits, the problem was discussed and understood. Her breasts healed, and with new technique she was able to feed the baby normally, and with pleasure - a pleasure she had been deprived of through seven weeks of misery and pain.
The mother said to the author: 'Why couldn't the delivery staff have given me this advice from the beginning? It's really distressing when you've just had a baby and the whole world is upside down, to be confronted with so much contradictory advice and so little help.'
We can only echo the mother's question: what can possibly explain such multiple failures in nursing care? It's hard to know, but one might speculate that the delivery unit was staffed by people who saw their job solely in the most basic technical and medical terms (a production-line), excluding anything that required a human relationship to understand and resolve problems - a complete absence of humanity and empathy.
The situation of post-natal care is another of those in which we can see how vital good nursing care is, well beyond the simple physical well-being of mother and baby - here is a chance to treasure and enhance the experience of motherhood; to share in the turmoil and confusion and joy of the time; where appropriate, to teach and advise; to give the mother support and confidence and optimism about the huge undertaking she has ahead of her. There are few more exciting and important processes in the whole of healthcare, and they are more or less exclusively the preserve of nurses.
A pain in the back
Yusuf is a forty-five year old immigrant from the Middle East to a Nordic country, where he has lived for twenty-three years. He is well-established, speaks the language fluently, has a family of three children and a respectable job as a quality control manager in a manufacturing company.
In 2000 he began to have severe and more or less continuous lower back pain. His doctor was unable to make a diagnosis and prescribed painkillers. He did not make a referral or suggest any alternative. Further visits resulted in a similar outcome.
Desperate for relief, six years after the problem began, Yusuf visited a hospital out of his own locality where the investigation revealed posterior fusion of L4 and L5. The specialist advised him that there was no remedy other than an operation with a 70% chance of success. There was no discussion of prognosis without the operation.
He was immediately referred to an orthopoedic surgeon in a major, metropolitan hospital where three visits confirmed the diagnosis and the single option of an operation was offered, with the same chance of success advised. He was told that no-one recovers 100% from the operation, but that the severe chronic pain would be substantially relieved if all went well. At the time, Yusuf felt that the surgeon had been careful in explaining the procedure, risks and associated issues, and had left the decision firmly with him.
Yusuf is highly computer literate and spent a good few hours researching his problem on the internet and looking for alternative solutions, particularly those that might avoid surgery. Reviewing a wealth of material, there appeared to be no alternative.
Still in severe pain, he waited five and a half months before he was called to hospital. On arrival, he was told the operation had been cancelled, for reasons that were not clear, and was sent home. A fortnight later he was telephoned at work and told the operation would be the next day.
During his six days in hospital he was groggy and uncomfortable, but felt as though there was an improvement, in spite of his knowledge of the level of analgesics he was being given. He was discharged with a short-term supply of a decreasing dose of morphine.
On discharge there was no information about follow-up appointments, nor about the likely progress of his recovery, nor about the possible signs of a bad result.
Within a few days of his return home, he was beginning to feel acute and recurring pain in several parts of his body, and, as the morphine was phased out, it became severe and chronic again, though dispersed quite differently than before the operation.
He decided to wait for three weeks to see how things developed, also giving up the morphine early as he felt uncomfortable with the side effects. He made one phone call to the department, when he asked about the meaning of the pain he was suffering, and a nurse advised him to 'relax and wait.' There was no other contact from the hospital.
At this stage, he wrote a long and detailed letter, elegantly composed on his computer, outlining the locations and nature of the pain he was experiencing, including front and back images of the body pinpointing the sources of pain. This communication was hand-delivered to the hospital.
There was no response to this and, after a week, he sought the intervention of a doctor friend who called and left a message for the surgeon requesting a return call for discussion about the patient.
A few days later Yusuf received a one and a half line email from the surgeon. This made no mention of Yusuf's conscientious communication, nor his continuing problems, but simply offered a follow-up consultation three months ahead.
A couple of weeks later, Yusuf received a standard pro forma letter inviting him to an appointment only three weeks ahead. 'Welcome to the Orthopoedic Department' ran the rather breezy headline. He was instructed to inform the hospital if he could not attend.
Yusuf is a good-natured, trusting man. He does not blame the surgeon for what appears to be the failure of the operation: 'If I can't trust people with knowledge and experience, who can I trust? They tried to help me,' he says. The 70/30 risk was clearly explained to him (and he had two friends who had had successful spinal operations). Though he had only positive expectations, he has courageously accepted their disappointment.
What, then, are the failures of the surgeon and the hospital in caring for this model patient?
You could go through the story and mark the points at which you feel things could have been done better, and add others which you feel are evident from the text - then check your points against the list that follows.
The most obvious failures:
- The first doctor did not pursue the problem with any degree of thoroughness, nor seek a second opinion nor make a referral to a specialist (maybe the arrogant assumption that he 'knew what he was talking about'?)
- This first doctor left the trusting Yusuf believing that there really was no remedy, and condemned him to six further years of pain, unrelieved by any hope of change
- While the specialist was frank about the 70/30 success/failure risk, he did not communicate anything about the effects of failure, nor make any comparison between Yusuf's prognosis without the operation and the possible conditions resulting from failure. While such information may not have changed Yusuf's decision, knowledge of the relative risks of two courses of action is a critical part of making a responsible, balanced decision about taking either one of them
- While common, the waiting period for the operation seems inhumane to this author
- The last-minute cancellation of an operation (also not uncommon) is a deeply distressing experience for a patient who has prepared themselves mentally, organised their personal, family and working lives for absence, and built up an optimistic expectation of a solution to their problem
- Whatever the reason for cancellation, the patient should be given an honest explanation: 'We're really sorry; we messed up and overbooked' - or something of the kind. Yusuf received no explanation.
- A last-minute summons for an operation has an equally damaging effect: puts a patient into a state of disorganisation and panic while they make hasty (and maybe difficult) provision for their absence from home and work - a poor state of mind and body in which to undergo major trauma
- The discharge communications were appalling, particularly the absence of any briefing as what he should expect in the early days and how he might interpret physical signs; what might indicate failure and what he should do; and the absence of any follow-up arrangements or contacts at all
- His enquiry phone call to the hospital was not taken seriously; no support or concern was shown and it was probably dealt with quite inappropriately by a nurse, rather than by the surgeon himself
- The absence of a response to Yusuf's careful communication about his suffering (a powerful cry for help) was entirely ignored, indicating a degree of indifference to patients
- The vestigial email, prompted, it seems, only by third party intervention, made no acknowledgement of Yusuf's contact, nor his suffering, and offered further contact only at a ludicrously distant point in time
- The impersonal summons to a seemingly arbitrary consultation some weeks ahead again reinforced the impression that the hospital had little idea who he was (other than one of their patients) or that he might have any claim to special attention
- The inappropriate (offensive) tone of this communication is indicative of the worst kind of bureaucratic mind at work - one which has no grasp at all of the possible state of mind of a recipient and of the impact that such a communication might have: no audience empathy
And so it goes on:
- This is a patient who has been failed by (in his view, blameless) surgery, leaving him with a potential lifetime of pain, and there has not been one single note of regret or explanation or concern; no recognition of his uniqueness and its demands for compassion and communication
- He wants, needs, investigation of his current problems, and information about them and about the future - but he must wait, without support or contact from those who are responsible for him.
Were Yusuf anything other than the generous, long-suffering chap he is, this case might well have pushed him to aggressive measures to make himself heard, even to initiating litigation out of sheer frustration and desperation at the failures in commitment and communication.
Where do you stand?
As you read this story, did you feel excuses and reasons on behalf of the surgeon and/or the hospital popping up in your mind? It would be only natural if you did, but you can probably also understand how poor a filter they are for fully grasping the patient's perspective - how truly irrelevant and distracting they are - more like a brick wall, in fact, hiding the patient completely.
Having a sensitive and accurate empathetic understanding of patients' perspectives may sometimes be acutely uncomfortable, embarrassing or distressing. We should not defensively try to avoid such disturbing feelings, because - more likely than not - they alert us to a dimension of truth without which our thinking, planning, behaviour and communications will inevitably be partial and defective. In this case, as well as feeling the impact on the patient, we certainly need to understand the causes of the failures (explain them at least to ourselves) and to do everything possible to remedy them, either at their very roots or in the way that communications deal with deficiencies.
Two years after this case study was written, Yusuf is still waiting for someone to take his problems seriously, though a specialist at a pain clinic has taken him on and will try to help.
The professor's daughter
This is a highly condensed and edited version of a physician-father's account of his daughter's perilous treatment in a large, Western European hospital. It raises several major medical and treatment issues (which will not be dealt with here); serious questions about communication and quality of care; and shows some important aspects of the mindset of a patient.
The patient's mother, ex-wife of the physician-father, and a senior ICU nurse, was present throughout, and took an active part in all the observations and assessments, which, in this narrative, for the sake of simplicity, are attributed solely to the father.
Over the phone, my athletic, fit, three-months pregnant daughter, Monica, said she'd had chest pain for three days and was assuming it was an infection caught from her young son. I, anxious father, with past research in the area, immediately thought about the possibility of a pulmonary embolism (PE), though it was unusually early in pregnancy for one.
I strongly advised her to see her doctor, which she resisted, not wishing to bother her. She did go, however, and examination revealed no signs of venous thromboembolism (VTE).
A few days later Monica reported that the pain had been reducing, but had shifted and begun to worsen. She again indicated her reluctance to cause any trouble for her doctor. Two days later she fainted in a shop and, on my insistence, did go to her doctor, who immediately referred her to the large, local hospital, where they kept her overnight for observation.
I swiftly made my way to the hospital and was alarmed to hear that they were considering discharging her after the consultant ward-round, as they weren't sure she'd had a PE. On the other hand, they might consider anticoagulation if blood-tests suggested VTE.
The routine drip in her arm suggested seriousness, but more worrying to me was a greyness round her eyes, blue-tinged lips, overall pallor, and shallow, painful breathing. I knew she didn't like hospitals, and hated being ill, but that did not account for her frightened behaviour. Blood pressure and pulse were normal, but she had the cool, clammy skin and restless anxiety of the shocked patient. The previously comforting test result of normal blood oxygen level now looked doubtful in the light of her lip colour.
The doctors had told her they thought it most likely she had some myalgia-inducing virus infection, but they also thought a small PE was possible. An oxygen mask by her side suggested their view of the possibility of the latter.
When the consultant arrived he confirmed his view of the likelihood of a virus myalgia. He commented on the patient's good fortune in being admitted on a Thursday - the one day of the week when they did ventilation-perfusion testing. He said she would probably be home within a day or so, unless there was a small PE, in which case they would start anticoagulation. He said that a blood test which indicates the presence of abnormal blood clotting was positive, but that it was often falsely positive in pregnancy and they were discounting it.
The virus myalgia diagnosis simply did not fit with the patient I saw in front of me. Young people tolerate shock well, compensate and maintain blood pressure until compensation fails, then die quickly.
The consultant returned with the scans. He invited me to look at them with him. They showed about one third of one lung with evidence of blood flow - a quite exceptionally serious blockage.
'She's been on Heparin since last night,' the consultant remarked. Heparin would not affect the existing clot, nor stop a further clot in her leg from breaking off, with likely fatal effects; it would increase the risk of bleeding under the placenta and of abortion; it had to work perfectly if Monica were to have time to break down the PE herself.
They had considered fibrinolytic drugs, but rejected them on the basis of the risk of placental bleeding and abortion. The registrar, after telling Monica that she had only a small PE, if one at all, had added that a big PE would require fibronolytic therapy and the consequent loss of her baby.
After the PE was confirmed, anticoagulation was started. She was not told how serious her condition was, nor did I or the consultant answer honestly her question: 'I won't have an abortion, will I?'
I went out for a break, but was recalled by a breathless nurse. Monica was being taken to intensive care and wanted me with her. The senior cardiologist, asked for a second opinion, strongly recommended the fibrinolytic, Alteplase. Monica was terrified. The cardiologist examined her and judged that the need to have the PE lysed was inescapable. What about the baby? Checking with the drug information service and the manufacturer revealed that there was no experience of Alteplase use in pregnancy at all.
Monica's blood pressure was lower and her pulse rate raised. Was this fright or decompensating? What about the known risk of fibrinolytics causing bleeding?
After the Alteplase infusion was started, and during a restless and painful night, Monica asked: 'I'm not going to die am I?' No-one gave an honest answer about the risks, which Monica may well have recognised.
After a couple of hours, at about midnight, there was bleeding from the sites from which she had had blood taken, and around the IV infusion cannula. Her blood pressure appeared to be going down and her pulse rate up - the divergent lines called 'the jaws of death' by a previous colleague of mine.
While looking at the charts, I noticed that Heparin was still being infused along with the Alteplase, which I knew to be contraindicated. I asked the nurse if I could see the package insert for Alteplase: it was clear that the two drugs should not be given together. But it was too late: the Alteplase was finished and she would have been restarted on Heparin in any case.
The almost accidental discovery of a PE and this dangerous error in prescribing combined to deeply undermine my confidence in the doctors.
Recovery came in the small hours of the morning: pulse started to fall, blood pressure later started to rise, and colour came back to her skin. The first experimental use of Alteplase in pregnancy had passed without disaster.
Now she was feeling better, her chest pain was bothering her more. Some time later a nurse arrived with 'tablets for the pain'. I roused my tired brain and was shocked to see a particular non-steroidal anti-inflammatory (NSAID) drug belonging to a class that reduces blood platelet stickiness. All NSAIDS can lead to gastric ulcers and potential bleeding, especially in stressed ICU patients. NSAIDS were absolutely contraindicated in this situation.
Monica's analgesia was postponed while a frosty and indignant cardiologist quizzed me about my right to interfere with what he regarded as their 'routine' treatment, resisting my apologetic observation that there were written warnings about combining the drugs. He later criticised me for making the patient anxious and explained my lack of judgement with reference to the traumatic night I had spent at my daughter's bedside.
Without comment, he prescribed a more suitable painkiller and Monica was then further troubled by her uncertainty about whom to trust. The cardiologist had given her the impression that he changed drugs to humour me. I was able to find and show her the relevant manufacturers' leaflets which confirmed my view. But that did nothing for Monica's confidence in the medical team on whom she was going to have to rely for therapeutic guidance and decisions during the rest of her vulnerable pregnancy.
A bright and memorable spot in this dark tale, was the kindness, proficiency, compassion and attentiveness of the nurse who settled Monica into the ICU at that particularly alarming stage of events.
- What questions about clinical practice in this story do you feel need discussion? What was done badly? What was done well? What should have been done differently?
- What aspects of communication in this story give rise to concern? How were the issues of risk and telling the truth dealt with?
- How could the relationship with the patient's expert father (and mother, as it was in real life) have been conducted more positively and professionally?
- How would you characterise the behaviour and attitudes of the medical staff in this case? What do you feel were some of the personal and professional failings, and what could be their causes?
Vaginal cream: what happened?
Vaginal cream causes a storm
Staff in an all-night pharmacy were shocked last night when a man stormed in shouting that his manhood had been insulted by a product he had been sold there. Customers stood back as the forty year-old raced to the counter brandishing a tube of cream and making the air blue with foul language.
Trainee pharmacist Ilse Bergman, 23, described the scene to our reporter: 'It was very frightening. He made straight for me at the cash till, waving his arms about and called me a number of names I shalln't repeat. The customers all moved away and many of them left the pharmacy.'
The night manager took over from Ilse and tried to calm the man down. Eventually, after a lot more shouting, the man threw the cream at the manager and said: 'Can't you **** well see that I'm a man? You **** people just taking the ****. I won't have it! **** you all.' Then he went out, knocking over a display of slimming products on the way.
The offending product, an antifungal cream, stated on the label that it was for 'vaginal use'. It appears that this was what had caused the storm.
'We do get some strange and worrying people in here sometimes,' Ilse commented. 'When you're training, you don't really expect to have to deal with such people. It was a big shock for me.'
A man was later arrested for threatening behaviour and bailed pending further enquiries.
So, how did this worrying event arise?
Why had a man been sold cream, for his own treatment, with a vaginal use indication?
The answer is very simple, and it indicates both helpful service by the pharmacist who sold it, as well as a failure to understand the potential sensitivity of the transaction, and a failure of communication.
The man wanted medication for treatment of a fungal infection of his foot. The appropriate cream (ekonazol 1%) was available in small and large tubes, each of them with a specific indication, as required by regulation: the larger one had the main indication 'mycotic vulvovaginitis', since the product in larger volume was most often used for that. Judging that the patient's described symptoms required a larger volume of cream than supplied in the smaller tube, the pharmacist had sensibly offered the larger tube, containing exactly the same cream, as a convenience and sensible economy. Whether or not she had clearly explained what she was doing, and whether or not the customer was listening, are both uncertain. However, what was all too clear was that the customer did not get the message, and was deeply upset when he got home and read the label.
- Never assume that things which are obvious and unimportant to you are also obvious and unimportant to patients (in this instance, you may know that the cream is the same and that 'indication' is a formal category excluding many others; the patient will almost certainly not).
- Be aware of the extreme sensitivity of some people to things which might appear to reflect on their sexuality in any way.
- Be aware that there are some people who will not be willing to carry home anything which could possibly be seen by a partner or family member as compromising; 'Why have you got a tube of vaginal cream, dear?' could be a real problem in some households.
- Always ensure that you communicate clearly and check that your message has been fully received and understood.
- Where necessary (as it probably was in this story) show the patient the evidence: point out the contents or formulation as printed on the label or the package insert; show where the range of secondary indications are listed.
B The nature and importance of communication
A Revision and discussion
- Why is it so important that we should examine our degree of liking for a patient before we launch into a professional relationship with them? What are some of the pitfalls if we fail to make this assessment at the very beginning?
In our private life, the people we take seriously and spend time with are those we like. That feeling of liking may be almost instantaneous at the point of first meeting and can be anything from mild to very strong. These initial feelings have a very powerful influence on whether or not we decide to pursue or develop a relationship of any kind, and on the degree of practical and emotional investment we choose to make in it immediately and in the longer term.
Many variables will affect whether initial liking leads to a continuing relationship, but even in the case of a single, one-off meeting (at a party, for example) we offer our attention and goodwill to those we feel comfortable with, and avoid those who seem to have little in common with us. Initial impressions may change in either direction over even very short periods of time, as we find that people we were initially attracted to turn out to be boring or disagreeable, or those we disliked at first reveal some attraction. Nevertheless, we are always more tolerant and forgiving of those who first attracted us, until the point that the attraction fades.
These initial responses are rarely conscious and almost never rational - they arise from our inner being and reflect our idiosyncratic psychological history and instincts. While the process may seem obvious as we discuss it here, we are rarely aware of it as it happens. Even when we subject it to scrutiny we may often have little idea of how it works or why it produces the feelings it does. We are often baffled in our attempts to explain coherently why we like or dislike someone.
These very influential and non-rational responses occur every time we meet anyone, anywhere, including, of course, when we meet patients and colleagues for the first time.
A positive or negative first impression, stimulated maybe within one or two seconds of meeting someone, will influence, even determine, the nature of the subsequent relationship and communication in ways which we cannot control. In professional relationships, we have a duty to be alert to first impressions, to examine them and to moderate or control their power. This applies especially when we meet someone who represents some kind of stereotype to which we react strongly.
In Chapter 9 of the book, there is a list of the many human variables to which we may react strongly in one way or another. If we subject our first impressions to analysis, we may come up with some answers ('I dislike the military mind'; 'I have great problems with over-protective mothers'; 'I react badly to effeminate men' - and so on), but there may also be elements in our responses which remain mysterious. The exact inner motivation is less important than recognising its influence and moderating its effects.
The pitfalls of failing to recognise the impact of first impressions are to give less than the best service to those to whom we react with any measure of negativity, and to pay excessive attention to those to whom we react positively. In both cases, we are permitting our psychological needs to determine the quality of our professional service and so distorting it in ways which are not matched to the patient's needs. Excessive attention may be attractive to a patient, but it distorts their perception of appropriate, good service, and may take their expectations well beyond what is reasonable (or possible) for an HCP or healthcare in general to deliver. It may also lead to an HCP allocating time inequably.
None of this is to suggest that an HCP should not like some patients more than others- that is human nature, inevitable and entirely acceptable. But the professional obligation is to keep the spectrum of attention and goodwill fairly narrow, so that everyone receives service appropriate to their needs, avoiding the stronger effects of aversion or dislike as much as those of liking and attraction.
- Why is simple transmission of a message, without follow-up activities, so unsatisfactory? What are some of the assumptions of those (bureaucrats, teachers, HCPs) who believe that their communication task is complete when then they have simply transmitted a message? Why is abandoning the top-down, expert-driven model of communications such a profound challenge?
Without follow-up activities, you can never be sure that a transmitted message has even arrived at its intended destination, let alone whether it has had any effect. This obviously applies to messages which are sent through the postal system or by email: both can be incorrectly addressed or get lost on the way. But it also applies to notices (has anyone seen it?) and even to face-to-face communications (is anyone listening?)
The assumption of many people, in all walks of life, is that once a message has been sent, the communications task is complete. This is particularly true of those in positions of authority, when there is often an underlying authoritarian or paternalistic assumption that it is as much, if not more, the duty of recipients to make sure they receive messages (or instructions or commands) and respond to them, as it is the duty of the sender to facilitate and secure the process. It is an absurd assumption, but it is not uncommon. (Blame for not reading and responding to the small print in some large documents is a clear example, and familiar to many of us.)
The fundamental failure is to grasp the fact that effective communication is an interactive process. It requires energy, imagination, activity and commitment. It does not happen spontaneously as a result of bureaucratic, paper-pushing processes, nor as the result of merely transmitting information, however energetically or comprehensively.
The top-down model of communication, especially when based on explicit authority or expertise, does not sit well with modern values and habits of democratised society and communications. With the explosion of peer-to-peer communications on the internet, for example, people are learning to trust themselves and their peers in the discovery of solutions and the acquisition of knowledge. While experts are still valued, they are much less likely these days to be trusted unquestioningly, and there is an expectation that answers should be found through discussion and consensus rather than by imposition or fiat.
In many cultures there is still strong deference to authority and expertise, but even in these places (China is an example cited in the book), there is a growing recognition that challenge and debate, and the development of critical minds are essential aspects of dynamic societies and the sources of innovation and progress.
Those who, in the past, have been deferred to, whose authority has been unquestioned, are often reluctant to relinquish what they see as their superior status and positions of power, which sometimes include a degree of mystification of purposes and decision-making. They are not comfortable with their views and decisions being questioned. However, in the modern world, authentic authority and respect are increasingly reserved for those who both know what they are talking about, and whose disposition is one of democratic commitment to negotiation and partnership. It's an enormous challenge for those accustomed to a command and control model of society and organisational life.
That model is one which has been pervasive in medicine for a very long time: the autocratic consultant or administrator or the production-line doctor, nurse or pharmacist for whom patients and colleagues are objects or status-inferiors rather than partners.
Abandoning conventional practice means overcoming lack of knowledge, lack of imagination, and probably, laziness. It means a degree of humility in the face of the needs and demands of one's audience, recognising their rights to respect and involvement. Communication involves the gritty and complex business of involvement in human relationships, and that is a challenge beyond the vision and ability of many of those for whom effective communication is actually a core element of their responsibilities.
- What is the difference between process and content in communication? Why does process have such a powerful influence on the effectiveness of communications? In planning a communication what are some of the process variables that must be considered before a message is sent?
Content is the literal meaning of the message as intended by the sender ('Come and see me at 10 a.m.'), while process refers to the many variables which affect how the content is communicated and perceived. These may have much more impact on the recipient than the content itself and include:
- Recipient's state of mind
- Perception of the content
These may affect the recipient - maybe stimulating resentment, fear, curiosity, irritation and so on, and cloud the meaning and intention of the message.
In face-to-face encounters, the emotional state of the participants and tone of voice may be so influential that the content of the message is lost. The content may actually be irrelevant to the purpose of the communication which may have emotional rather than simply rational purpose. The angry question, for example, 'How could you possibly have given the patient a double dose?' is unlikely to be seeking information about how the events occurred, but, rather, conveying anger and blame. Someone who has just experienced bad news may be in such a state of emotional turmoil that they cannot receive and process a communication at all.
In a meeting it is often the process which has a major impact on how successful the discussions and decisions are: if people are feeling stimulated and committed, they will be likely to have a productive meeting; if people are bored or angry or alienated, the meeting may well be a waste of time. It is not the content of the agenda which necessarily determines how people feel, but much more how they feel during the meeting and their response to the way the meeting is being conducted. In a meeting, the management of process is a critical aspect of success.
In a relationship with a patient, an HCP may do all the right things in terms of diagnosis, treatment, dispensing, counseling and providing risk information but may still alienate and upset the patient by using an inappropriate tone of voice, rushing through the consultation, showing evidence of prejudice or not taking their anxieties seriously. These elements of the process may have a lasting and damaging impact on the relationship and on the patient's collaboration and health.
As we interact with anyone, or plan any communication, we need to anticipate how the process will influence perception of the message and response to it. We should recognise, for example, that giving a patient bad news by letter, dragging someone out of a busy work environment to get them to fill in a form, using a patronising tone of voice in a patient leaflet, or making important decisions without consulting those they affect will all have negative effects, however important the issues or however well they are planned and formulated. In these cases, the process will undermine or destroy the purpose of communicating content.
Empathy with the intended audience is the key: how will they be feeling when they receive my communication? How much do they understand the issues behind my message? Is there a risk of a negative response of some kind? Will they be too busy and tired to deal with the message just now? Will they understand the language I am using? These, and dozens of other important questions, will help us make sure that the message has its best chance of being received and understood as we hoped it would. In face-to-face encounters, these questions need to be answered by careful observation of the recipient and by making direct enquiries.
After delivering our communication, we then need to review its effects, seek feedback about the content and the process, adjust the communication and then learn how such communication can be improved in the future.
- What are some of the similarities and differences in communications between good professional relationships and good personal relationships? Where are the boundaries of good professional relationships and what are some of the purposes and activities they should usually exclude?
The fundamental difference between personal and professional relationships, is that professional relationships exist for specific, identified purposes. There is an implicit contract between the parties about those purposes which are essentially to serve the interests of the patient's health and welfare. The professional provides their knowledge and skill, mediated through their personality, for the benefit of the patient, while limiting their selfish interest in personal, emotional or social rewards. While there may be informal, social aspects to such a relationship, they are secondary to the primary therapeutic intent, and exist within quite strict boundaries of relevance and propriety.
Social relationships, in general, do not have such boundaries, though there may be limitations imposed by social conventions, religion, morality and the law (age of consent, for example). Social relationships are free to develop in any direction which has the consent of both or all parties.
This topic is discussed towards the end of Chapter 5 in the book. The conclusion there about the qualities of good professional and social relationships was that there was little difference between them in terms of their intrinsic qualities and what the capable HCP offered to patients: warmth, acceptance, respect, safety, openness, trust, and so on, and that the best patient relationships had many of the qualities of good, personal relationships. Excellent relationships with patients can be established without the parties becoming friends - they may be friendly, trusting and open, but the relationship is not heading towards anything beyond the therapeutic purposes. The HCP is not seeking the broader or longer-term rewards which personal social relationships offer.
Sometimes a degree of detachment is required in patient relationships when, for example, an HCP cannot avoid causing pain, or when a patient is difficult or objectionable, or when the patient's emotional suffering is great: an HCP must protect themselves from the disabling effects of normal human responses and rein in some natural reactions in order to focus on the work and get the job done. That does not mean being less attentive or compassionate, but it does mean maintaining a degree of emotional distance which would be less likely in a social or personal relationship.
- What are some of the ways in which people try to gain the approval of others or to compensate in relationships for deficiencies in their lives? What are some of the problems caused by anyone whose drive to seek approval is greater than their interest in finding the truth and solving problems? What particular problems are associated with HCPs or patients bring driven by the need for the approval of others?
Human beings are infinitely ingenious in seeking the approval of others, and this motivation has a very powerful effect on the behaviour of people of any age. Few of us can survive happily without the recognition, attention and approval of others. Babies seek attention by crying, young children seek attention through physical contact (snuggling up to others, for example), by doing things which attract approval, and, of course, by being naughty. This last is one of the most effective ways of ensuring adults stop whatever they are doing and pay immediate attention (a technique which many children, adolescents - and adults - exploit to the full). In the early years the urge for attention is expressed openly and frankly, and the motivation and need are obvious. In later years, when the social value and expectation of independence, of 'standing on your own two feet', has been inculcated, expression of the need may be more calculated or devious.
Achieving adult independence involves learning to approve of yourself and achieving an internal sense of confidence that who you are and what you are doing have value. While such confidence is learnt through the approval and validation of others, in the end, the need for external validation reduces as a more secure sense of self develops.
Some people never reach such levels of independence and may, in one way or another, spend their lives driven by the need to do things and be the kind of person approved of by others. For example, the children of very demanding parents, who may feel that they have never achieved what was expected of them, or that they have a lifetime's debt to pay for their nurture and education, may never make decisions that reflect their own true needs and hopes, because they are always trying to please their parents and gain their approval. This process can continue even after parents are dead. The need to please may also be transferred to others in positions of superior status - bosses, teachers, older people, for example.
The point of all this is that those who are more concerned about pleasing others than they are about living their lives according to their own wishes, may never be able to express their real needs - emotional or physical, including their health problems - in ways which are authentic and transparent. This might apply, for example, to someone who is in an abusive relationship, who is committed to pleasing the abuser, at the expense of their own comfort and happiness. It might apply to a patient, whose wish to please their HCP led them to lie about taking their medication, about lifestyle issues (sex, drinking or smoking, for example), about levels of pain or satisfaction with therapy. Such motivation might distort the process of giving informed consent.
It can apply to professionals, too: a student HCP may follow the instructions of a superior, or adopt their values or behaviour in order to please, without fully understanding what they were doing, failing to assess its meaning or actually disapproving of it. People may express agreement to avoid disapproval, but remain uncommitted to following through with action.
There are ethical and practical implications in all this. First, if someone is doing what I suggest in order to please me, and not to meet their own needs or goals, then I am complicit in the neglect of their independence, and perhaps in the unethical manipulation of them, even with their apparent consent. I have some obligation at least to question such submissiveness, maybe challenge it. The practical dimension is simply that if someone agrees to something when their heart is really not in it, then they may do it badly or not do it at all.
For some, 'I'll take your advice' will be an expression of mature engagement; for some it will be a denial of responsibility.
- Summarise the main arguments for the proposition: Effective communication is at the heart of the best healthcare
This is an invitation to reread and revise Chapter 7.
- Identify half a dozen communication activities in healthcare and specify how response and feedback mechanisms can be built into them.
Amongst many things, you might think about:
- Leaflets and posters
- Forms and labels
- Reception arrangements
- Pharmacy practice
- Support in chronic illness
- Treating ethnic minorities or foreigners
In each case, you need to identify your audience or audiences and plan your enquiries to take account of all the variables. In researching user opinion (including colleagues'), you can consider these, and other mechanisms:
- On the spot feedback questions
- Arranged individual interviews
- Small groups
- Letters or emails
- Local media (radio, print, TV)
If people are to take your enquiries seriously, there must be a commitment to letting them know what happens after they have given their opinions. The outcomes need to be fed back to participants, along with information about what change the exercise is going to produce.
- Identify categories of patients who might benefit from participation in support groups. What are the needs of patients which cannot always or ever be met by HCPs alone?
There is probably no end to the categories of patients who could benefit from support groups of some kind, although there will be individuals for whom such methods are not suitable or comfortable. The need for support of this kind is probably most clearly indicated for patients who have long-term needs or challenges (social, psychological or medical) which require management beyond the reach of healthcare resources. Examples include: chronic disease or pain; lifetime medication; long-term care of the sick (families and partners); HIV, diabetes, MS; mental illness; addiction; obesity; smoking, and so on.
Independent groups have started up to meet these kinds of needs in many parts of the world, but where there is no local provision, and there is a nucleus of patients who might benefit, then HCPs might well consider facilitating the start-up of groups. The rationale is that (a) patients often find such groups enormously supportive and empowering, and (b) the transfer to patients of some degree of individual and mutual responsibility for their welfare reduces demands on healthcare resources and promises improved outcomes.
- Examine all the patient communication activities and materials in your immediate environment and assess how far you think they meet the basic standards of effective communications. How far are the needs of patients really catered for in the activities and materials you've identified?
In reviewing these issues, you might find some of the issues in Q1 above helpful, though the scope of this question is wider than those issues alone.
- Examine the official and organisational communications which you experience from day to day and assess how far you think they meet the basic standards of effective communications. How far are your needs catered for? How far is process recognised as a vital element? What exactly are the virtues and deficiencies of relationships and communications in your situation?
Here, amongst other things, you might like to consider the quality of relationships:
- With bosses and managers
- With senior colleagues
- With peers in your own and other specialisms
- Within your own team and with other teams or departments
- With professionals outside your immediate situation (community physicians or pharmacists, para-medics, for example)
- With junior staff, students, technicians
- With non-medical support staff - receptionists, clerks, cleaners, security staff
- With suppliers and contractors
Organisational culture and relationships express themselves in many different ways, some of which have a profound impact on morale:
- Notices and formal communications on paper and by email
- Personal communications (style, tone, privacy)
- Planning, budgets, re-organisations
- Systems, forms, paperwork, reporting data
- Attitudes to criticism, suggestions, ideas for change (openness, suppression, hostility)
- Treatment of various groups (fairness, patience, justice)
- Provision of physical resources, supplies and equipment; rest areas
- Shift and working hours management (flexibility, responsiveness to individual needs)
- Sanctions, controls, discipline
- Quality standards and their management
- Safety and crisis management
- The whole corporate ethos
- What are the areas of patient ignorance or misunderstanding in healthcare issues that you most often encounter and that have a negative impact on communications and therapy? What measures can be taken in your immediate environment to provide remedy? What needs to be done at a higher level to increase patient knowledge and understanding?
These issues are covered extensively throughout the book, especially in Patient Safety (Ch. 17) and Risk Communication (Ch. 19).What kinds of patient dissatisfaction are you aware of in your situation? What are some of the causes? What kinds of practical measures and improved communications might help to reduce patient dissatisfaction?
You may be able to sit down, review the last few days and come up with a list of obvious problems. You could discuss the question with your colleagues and make a list. You could ask some patients what they like and don't like about your service. Once you've honestly identified the problems, try and analyse the causes (whether or not they are remediable), and then examine ways in which improvements or solutions can be found for some of the issues.
Aims and ideals in healthcare
A. Revision and discussion
- Examine the Vision for Healthcare (Chapter 7), and subject each element to hostile analysis. Use both arguments you think of yourself and those that might be deployed by those with a different perspective. Keep to the level of principle (not pragmatic considerations such as finance, political will, and so on) and determine how strong and sustainable the proposed vision is against the opposition of those whose priorities are different.
Here is one set of arguments that might be raised against the vision set out in the book:
A vision for healthcare
- The purpose of healthcare is to improve the health, happiness and quality of life of all individuals and societies across the world through the diagnosis, management and prevention of disease
- This is altogether too grand, unrealistic and wide-ranging. The purpose of medical science is to diagnose, treat and prevent illness and disability. Issues of happiness and quality of life are matters for governments and social agencies and are beyond the remit of medicine. Medicine's responsibilities begin and end with the functioning of the body, including those dysfunctions which manifest themselves in social or psychological disability. A contribution to general social welfare is made by improving citizens' health, but adopting Hugman's utopian vision, even supposing it were plausible, would lead to nothing but frustration and failure.
- The priority given to healthcare in any society and the priorities and methods within healthcare must be driven by the express will of the people in general and by the wishes of patients and patient groups
- In democratic societies, the will of the people is expressed in the election of governments, and it is they who should determine the priorities and methods for healthcare, in discussion with experts and members of the medical profession. Patients and the general public can have nothing but their own specific interests and priorities in mind, and do not have the knowledge and experience to make a mature contribution to health policy.
- Healthcare priorities must relate directly to the disease patterns and social needs in every community
- Healthcare must certainly address the disease patterns in any given society, but whether 'social needs' should be part of the determination is a different question. If 'social needs' includes such issues as the desire for home-based services (GP visits, delivery of babies, or palliative care, for example), or for services for purely cosmetic or psychological needs, such demands may be well beyond what it is reasonable for a system to provide. 'Social needs' are the concern of other experts and agencies.
- Access to healthcare should be universally available on the basis of need, and not be dependent on wealth, status, age or any other variable
- This is simply utopian in a world of limited budgets. If education can be bought by those who can afford it, why not medical services too? A basic safety net should be provided for the poor, but the aim should be for every patient to make some financial contribution to their healthcare.
- Healthcare services should be provided swiftly and effectively to meet the medical needs of individuals and of society
- Yes, of course, but the definition of those needs should be made by governments and the professions. Generally, they are not issues on which the general public can make a plausible contribution.
- Society should take responsibility for ensuring that citizens, especially children and young people, are educated in medical matters, especially in all aspects of safety
- There is a grave risk in providing the general population with partial information about complex issues. Some basic rules and guidelines would not go amiss, but beyond those, medical matters are best left to a profession which is trusted. The average citizen can never understand the whole picture about any condition, and teachers are not well qualified to deal with medical matters at all.
- Decisions about therapy must be made in negotiation and partnership with patients who fully understand the risks and benefits of any option and of alternatives, and on their genuine, informed consent
- This is another assertion based on a totally unrealistic assumption about patients' abilities to have an understanding of disease equal to an HCP's. No patient can ever 'fully' understand everything about complex medical matters, and professional judgement has to be trusted. Even starting down the path of 'partnership' is wildly extravagant in terms of time, and few HCPs have the luxury of excess time for such indulgence. Of course, it's ideal if patients can agree to proposed treatment, but on most occasions, they simply have to trust the HCP and do as they are advised. Therapy can't be a matter of negotiation and debate.
- The full benefits of healthcare will be realised only when patients are seen as whole persons (that is, not disease states to be treated) and are willing and well-informed partners in the entire process
- This is simply a kind of romantic dream which has no relation to the tough realities of practice in most places. Medicine is about physical health, including an element of mental health, and the priorities are the diagnosis, treatment and prevention of disease. HCPs are not intended or trained to be social therapists, spiritual advisers, counsellors. Those roles are strictly for others.
- As far as possible, healthcare should strive to reduce dependence on itself, and encourage societies to take greater responsibility for management of their own health
- Driven as they are by fads and fashions, myths and misapprehensions, it's unlikely that most societies will ever be able to take any responsibility for rational management of health. The responsibility lies squarely in the hands of science and with HCPs in all roles, whose expertise is the only reliable guide to health policy and practice.
- Compassion, concern and respect are as essential to good healthcare as good medical practice
- This is another dubious assertion. While we certainly do not want insensitive, disinterested or disrespectful service, what a patient really wants is a competent professional who can solve the medical problem. We don't ask that other professionals should love us at the same time as doing a capable job: why should HCPs be any different?
The book as a whole is an assertion of the arguments behind the vision, and we won't rehearse all of that material here. The core refutation of the utilitarian arguments sketched above is this:
Disease is not simply an isolated occurrence within a physical entity, it is an event which affects a person in many dimensions of their physical, emotional and spiritual life. The body is not simply an object, it is the person. A disease of the body inevitably engages the person. Mind and body are indivisible. Health is a state in which both are in harmony and without distress. Harmony is facilitated, and distress is reduced by the human qualities of attention, compassion and respect. Physical health is sustained by psychological wellbeing. Patients who feel cared for generally recover more quickly than those who are dealt with more briskly, and even if they don't, they are more satisfied and more reconciled to their situation.
Though there are pragmatic arguments, ultimately, it's a matter of faith and values: this is the kind of world in which I want to live, and this is the path I believe will help bring it about.
- What do you see as the major communications challenges to achieve the vision with various audiences? What messages need to be sent to whom and by what methods to try and bring about change? (Concentrate on those nearest to you - managers and administrators, colleagues, patients, the local community, but consider others as well if you wish to extend your horizons.)
I suspect that, in their hearts, most people share the vision - they certainly do when it comes to treatment for themselves and their loved ones! The major obstacles seem to be: politics; economics; profit and ability-to-pay; and failure to take seriously the rights of all people to good healthcare, however distant or invisible they may be (failures of vision, justice and altruism).
One of the major communications challenges is to get beyond the response, 'That's all very well in an ideal world, but...' The most significant audience to convince, of course, is politicians, who have to be shown that a serious commitment to the reform of healthcare will make them popular and increase their chances of re-election. Campaigning at that level is really beyond this author's remit (and expertise), but it is clearly the way to generate the most radical change.
Nevertheless, in line with the suggestions in the book, much can be done at a local level, even when the environment is unsympathetic or hostile. I suppose the primary challenge is to protect patients as far as possible from the impact of a hostile environment, by ensuring that they feel their needs and concerns are taken seriously, and that they are treated with respect and compassion. Even that won't be enough if they are unable to get the treatment they need or fall through whatever safety nets there might be. Then, the challenge is to find ways of making the necessary resources available through relentless pressure on those who control the purse-strings and supplies.
If we genuinely subscribe to the partnership model of healthcare, then it is not just HCPs who should be agitating for improvements, but patients too: it is their rights which are being infringed when they cannot get the care they need, and it is their voice which needs to be heard. If policy-makers and managers are not aware of public opinion, and not subject to its pressure, they may do nothing.
If it is the local system, methods of organization, or management style which is standing in the way of effective healthcare delivery, then the problem needs to be tackled locally. Highly intelligent, dedicated staff are often subject to the whims and limitations of bad management, arbitrary decisions, and bureaucratic pressure and they have only themselves to blame if they do not take active steps to change things. Few managers can resist the collective voice of a well organized group of professional employees. When there is common cause in a hospital or organization, the staff have an absolute right to be heard and to expect, at least, committed negotiation. If we, or our patients, are resigned to less than the best, we can't make progress even at the micro level.
- What are some of the ethical failures in relationships and communications you see in healthcare and in the world around you. Identify some of the techniques and motivation behind ethically dubious behaviour and communications.
The clearest examples of unethical behaviour and communications in public life are those politicians and businesspeople who, challenged with some dubious practice, simply lie - with a conviction which, when their dishonesty later becomes known, is quite astonishing. Other dramatic examples are those people who, entrusted with some public or business project, manipulate it for their own benefit, maybe siphoning off funds for their own family, or taking advantage of their status to gain benefits and influence to which they have no right. These kinds of abuses are common, the world over.
Failures in honesty and transparency, at every level, are probably the most common examples of unethical behaviour - from the partner having an illicit affair, to the surgeon who covers up or denies the incompetence of a colleague, to the nurse who diminishes her patients by authoritarian assertion, to the pharmacist who orders drugs from dubious, cheap suppliers, to the rules of an organization which are set for the convenience of the organization and not for the patients - and so on.
Such behaviour results from the perpetrators not having a reliable ethical code, or being vulnerable to pressure and persuasion. They may be cynical enough to care only about their own interests, believe that they know better than everyone else, or that the rights of others are not important - all signs of moral turpitude and social irresponsibility. As long as they are not stopped in their tracks, and as long as they continue to enjoy whatever selfish benefits their practices deliver, they are unlikely to change their ways. We, ourselves, are guilty of unethical behaviour if we ignore, condone or support such behaviour, even if there is no direct benefit to us. This is an area in which we need not only skilled communications, but courage as well.
- What are the situations (if any) in which an HCP has the right to assert authority against the wishes of the patient? Include situations where there is legitimate (maybe legal) authority as well as those based on personal and professional authority. What are the ethical and communications challenges in such situations?
This is a very complex area and we can do little but scratch the surface. The starting point is acknowledgement of the fact that no HCP can actually force a patient to do anything at all, except when their behaviour (an assault on a member of staff, for example) or refusal to consent (to a life-saving intervention for a child, for example), puts them within the orbit of the law. The basic relationship with a patient must be consensual (mutual agreement), but when a patient dissents in matters which affect only their own health and welfare, their decision - after whatever efforts and persuasion may be tried - has to be accepted. Patients may not always know what is best for them but they are often clear about what they want or what they are prepared to accept.
HCPs may use moderate methods of persuasion (a second opinion, for example) or even coercion ('If you can't accept my judgement on this, I really can't treat you at all'), as well as the usual activities of empathetic attention, explanation, discussion, provision of evidence and so on. But you cannot force anyone to stop smoking, use a condom, adhere to medication routines, accept risks or treatment they don't agree with and remain within the boundaries of ethical behaviour.
- In what situations would you regard patients as being overly-dependent or unhealthily dependent on healthcare? How would you react to such patients and what would be the nature and content of your communications?
The most obvious signs of over-dependence on healthcare are frequency of contact and triviality of symptoms. There may be needs for attention and approval (which may be absent in domestic and social life), loneliness or other deficiencies which are compensated for by the care and attention provided by HCPs. Some people will be seeking a warm and pleasant place to spend time; some will find hospitalization a welcome relief from pressure, poverty or responsibility. Others will be the worried well and those suffering from hypochondria who are constantly anxious about their health or that of their children.
Dependent patients will often be showing signs of mild or more serious psychological problems, some of which could be the result of, or the cause of disease or injury of some kind. HCPs need to have some understanding of what is motivating the behaviour in order to try and deal with it and moderate or control it. Empathy is the primary skill, along with questioning, listening and reality-testing. The setting of boundaries is a real challenge, especially in avoiding the risk of patients feeling neglected or rejected.
When the needs causing patients to be dependent on healthcare are personal, psychological, social and not medical (or only partially medical), then HCPs need to try to find resources outside of healthcare which will have some chance of meeting them. Support groups are the most obvious method. These may be set up specifically to address a current need, or may be existing resources and networks in the community. While setting up a group will require time and resources, it may consume less time than dealing with a succession of demanding individuals some of whose needs HCPs simply cannot meet.
In the book there is a discussion of the extent to which whole communities are becoming over-dependent on healthcare. There is also the much more complex problem of the ability to weigh evidence and assess the credibility of claims, especially in the media. Enormous anxiety is caused by all kinds of wild claims and speculations about medical and other hazards, many of which have little or no basis in fact. This suggests that communications which are limited to individual patients won't bring about any long-term change, and that more ambitious social education is needed. This is a challenge for schools as well as public health education.
There is no simple answer, but if we always have in mind the goal of increasing the independence and self-sufficiency of patients, then, as we think of strategies for dealing with demanding individuals, we may find some solutions beyond the consultation itself.
- What kind of communication would you have with a patient who had no interest in being a partner in therapy, but simply wanted you to identify a problem and solve it?
'Partnership' relationships with patients is an ideal which we need always to have in mind. It is an ambitious goal which will never be achieved wholly, and progress towards it will always to faltering and slow. That applies to individual patients as well as to society as a whole.
The ideal implies behaviour that we should avoid as well as that which we should pursue. We should never behave in ways which diminish or damage patients' capacity to take responsibility for their own actions. We should never make them inappropriately dependent on us or impose decisions or therapy which they do not understand or to which they do not actively consent.
The more complex the disease, injury or therapy, the more important the partnership model is. In such circumstances, the time necessary for negotiating the nature of the relationship may be an essential element in the best therapy. But even with the simplest disease or therapy, no patient should leave a consultation without an understanding of the cause of their problem, the purpose and effects of therapy, and, especially, how such a problem can be prevented or dealt with in the future.
- What would you say to a patient (a) whose diagnosis you had got wrong; (b) to whom the wrong drug had been dispensed by you; (c) whose operation had been repeatedly postponed; (d) who had been reassured that all was well before a life-threatening disease was later diagnosed; (e) whose symptoms were so vague as to be untreatable. What are the ways in which these patients could be dealt with unethically and unprofessionally?
There are hundreds of possibilities. The most appropriate response will depend on the situation, the patient, the seriousness and impact of a mistake, and other variables, but any ethical response must represent the truth in one way or another. Here are some starters:
(a) I'm very sorry: it's clear now that it's not what I thought
(b) I'm very sorry: that was a mistake that should not have happened
(c) I'm very sorry: we're making your life hell with these postponements
(d) I'm really sorry: I was overconfident about the first test results and they turned out to be wrong
(e) I understand that you are not feeling well, but I'm sorry that I cannot find anything physically wrong with you. We need to try something else.
The dishonest, unethical response to any of these situations would be to try evade or disguise the truth, blame someone else (even the patient), or attribute failure to some external influence or pressure. Some of the mistakes here which require apology and recovery might have been less serious had the original situation been treated with more care - a less hasty diagnosis; a more cautious response to test results; a more realistic approach to scheduling operations, for example.
- Knowing that a risk-averse patient's life can be preserved only by high-risk therapy, how do you present the arguments for treatment ethically? What choices can you give the patient that respect their autonomy?
A few thoughts about this complex and challenging situation:
1.We need to know what it is the patient wants in the future, what they fear, what trade-offs they are willing to make, what support and time they need to consider their options and decide what they want to do
2. For this to happen, the patient needs to have a clear idea of what the options are - treatment (a), treatment (b), no treatment, postponing treatment, along with the best information available about the risks, harms and benefits of any course of action.
3. For a risk-averse patient, the only solution is the negotiation of the course of action which seems to the patient least alarming or risky, but which is compatible with the result they want to achieve. Good risk information and communication are essential, but maybe the most important thing is giving the patient time to resolve their own issues and to discuss them with their nearest and dearest.
- How should an understanding of effective, ethical communication affect relationships within a healthcare organisation or team? What principles that have been described in the book so far apply equally to professional and to patient relationships?
'Respect for persons' is probably the key concept: staff, like patients, should be seen as partners in the enterprise of healthcare, everyone having their important contribution to make, deserving of attention and support. Many organizational relationships are based on fear, with managers or senior personnel oppressing staff in all manner of crude and subtle ways. In healthy organizations communications are open; consultation is the norm; staff feel noticed, valued and appreciated; there is a real sense of collaborative, collective effort towards a shared objective.
Healthcare delivery is a daunting project, and there is no possible justification for procedures, relationships or pointless conflicts which distract attention from the task and waste time, energy and goodwill. Managers need to exercise empathy in relation to their staff, as much as HCPs should do so for their patients; managers need to listen and to understand that the collective intelligence of their people will deliver better solutions than any other method; that the liberated energy of a team of confident, valued, committed staff will move mountains.
D Behind the Scenes
A. Revision and discussion
- Think about an occasion when your perception or the perception of someone else was narrowed in such a way that understanding of the situation was prevented or compromised - maybe an argument or discussion with your partner or child; with a colleague or manager; with a patient or their family. What habits of feeling or thought caused perception of the real world to be deficient? Was the failure due to blindness to fact or evidence, to the perspectives of others, self-centeredness or something else?
Probably the most common basis of conflicts and arguments is between those who want different things and, at the same time, have no grasp at all of the feelings of the other person or of what is motivating them. Being filled with anger at the action or mistake of another person, for example, leaves little or no room for understanding or analysing how the situation occurred, whether the action was deliberately provocative or unintentionally irritating or inconvenient. If your mind is filled with a particular perception, belief or judgement there is little room for accommodation of evidence or views or wishes which are in opposition.
When we feel we are right, or when we are overcome by strong feelings of one sort or another, we become blinded to alternative explanations of our experience. This applies to patients as much as to HCPs, of course, and to all human relationships. The manager who thinks of nothing but cost-management may be completely blind to the impact of cost-cutting and to the experience of those affected by it: perception of the world is narrowed to a single dimension which is not shared by others, the validity of which they may question.
Pressure of time is a major threat to accurate perception and good judgement: rather than making a serious assessment of a situation, superficial evidence is taken as reliable and dubious decisions are based on it. The first impression of someone as a time-wasting scrounger may prevent taking their trouble seriously and treating them effectively. A careless, unfounded assumption of knowledge and expertise in a junior member of staff may narrow perception of the actual extent of their expertise and lead to error or accident.
The child who wants cash to go and play games at an internet shop may have no grasp at all of the reasons for an adult's refusal (other than the evident intention to frustrate their wishes), and may accept the decision or have a tantrum of self-absorbed fury. The child's perception is narrowed precisely to their own wishes, and not at all to wider adult concerns. Children (and all of us) have to learn that there are situations in which, for one reason or another, we cannot have what we want, and that, whether or not we regard the reasons as sufficient, we have to accept the fact. Such maturity of acceptance may not reduce disappointment, but it does reduce the likelihood of conflict arising.
As we suggest in the book, our background and history deeply influence our behaviour and motivation, often in ways we do not recognise at all. When we are reacting to others, we have to be acutely self-aware, watching constantly for ways in which our inner life may be distorting our perception of the external world, constantly checking to see that the evidence we are collecting and the judgements we are making are truly based on what is out there, and not on what we think or feel might be out there.
One of the most obvious examples, given in the book, is the way we may react to a patient (or colleague) about whom we have sexual feelings, however deeply buried: is our attraction to the physical person playing games with our perception of them as patient or colleague? Equally dangerous are the buried feelings we might have about people for whom we have feelings of dislike or disgust - people who are at risk of getting much less than the quality of attention and service they deserve.
While the idiosyncratic effects of our feelings and motivation may have free reign in our private lives (though maybe with damaging consequences from time to time), in our professional lives, they have no place, because they threaten the accuracy of our perception of patients and colleagues, and therefore the quality, integrity and effectiveness of what we do.
- What are the major influences in patients' lives which affect their relationships with HCPs? What are the elements which you see most frequently? What are some of the insights and communications in this area which are essential to managing relationships with patients sensitively and successfully?
Probably the major influences in most patients' experience of healthcare relationships are their expectations. Expectations will be determined by a wide range of factors, many entirely outside the direct influence of healthcare itself.
Here are some of those factors:
- A patient's previous experience of healthcare
- Their family's and friends' previous experiences
- The reputation of the HCP or clinic or hospital
- A patient's beliefs about health, disease, medicine
- A patient's individual psychology, confidence, optimism, independence
All these will have a profound influence on what a patient expects: whether they arrive with broadly positive or negative feelings; whether they are hopeful, anxious or fearful. An early grasp of where a patient stands in this set of feelings will ensure that management of them takes accurate account, consolidating positive feelings and addressing and reducing negative ones. This applies as much to the response of the receptionist as it does to HCPs and other personnel.
As well as coming with a set of expectations - which have a tendency to be self-fulfilling patients will also react very quickly to the quality of the environment and relationships offered - welcoming, attentive and concerned or cool, distant and alienating.
The extent to which an HCP perceives and responds to the deeper levels of a patient's feelings is probably the most significant determinant of how a relationship develops. Patients who come with a deep sense of dread about disease or pain may need a lot of time simply to unburden themselves of their overwhelming preoccupation before they can usefully discuss their symptoms. Breadwinners may fear loss of earnings more than anything else, and tend, paradoxically, to be careless of their health. The rich and self-confident may feel that all they have to do is spend money to solve their problems. Patients who demand drugs (or injections) may be difficult to convince that other remedies are required for their disease.
The fundamental insight is this: 'To help this patient, I must know who they are and what they are thinking and feeling in this situation.' While we can never hope to know everything, we must feel confident that we do have a grasp of the basic realities of the patient's life, and are not simply taking the line of least resistance and skimming the surface.
E Foundation knowledge and skills
A. Revision and discussion
- Why are checking understanding and seeking feedback so crucial to good communications? Why are these processes so often neglected?
The answers to these questions can be quite brief. First, if we do not check on the receipt and impact of any message we send, we can never be sure that it has arrived at all or, if it has, whether it had the effect we intended. If a child is doing something dangerous, we say, 'Don't do that,' and then we check to make sure the instruction is being followed - we don't wander off and just hope for the best.
But hoping for the best is just what happens in many situations, where a message is sent out without any attentive follow-up at all. In a face-to-face encounter, we need to ask if what we are saying is understood and to test understanding, ('Please repeat what I said'; 'Show me how you'll use this device'). In the case of emails, letters, leaflets, posters and everything else sent from a distance, we need to find out if the message arrived, if it was understood, and what effect, if any, it had on the mind and behaviour of the recipient.
If we don't follow this process, the risk is that our message will have no effect and the time and effort used in sending it will be completely wasted.
In public health campaigns, the kind of information needed is very obvious: if we are hoping to influence rates of HIV infection, for example, we need to know what current rates are and then measure them again during and after our communications campaign: what effect did the campaign have? For commercial companies, the feedback needed is very obvious too: what do the sales figures look like? What are levels of customer satisfaction? Is there evidence of people responding positively to our communications?
Second, the process of checking understanding and seeking feedback is very often neglected because of the assumption and belief that sending a message is communicating. Readers of the book know that this is a false and naďve assumption. It's interesting to speculate about the origins of this error: it may be that communications of the kind that concern us have, historically, always taken place within hierarchical systems and been delivered downwards from the top, from positions of greater to lesser power. Those in authority assume that what they have to say does not need explanation and justification, and that status inferiors have a duty to attend to, accept and make sense of what they are told. This corruption has infected education ('Think my way') and is evident everywhere in bureaucracies of all kinds.
The problems of checking out your communications are that (a) it's a complex, time-consuming and demanding activity to do well, and (b) it risks your being exposed to question and challenge.
Many of the problems and dangers in healthcare arise from poor communications: first, in the absence of information or guidance, or in the provision of poor quality messages; second, in the failure to check that patients fully and truly understand their therapy and medication and are motivated to follow guidance that they really understand.
- Why is the concept of territory so important in healthcare? What are the ways in which territorial behaviour can be a great stumbling block to collaboration and good service?
We are all comfortable on territory that is familiar to us; our levels of anxiety rise when we find ourselves on territory which is unfamiliar, especially if the territory if formal or official in some way. Unfamiliar territory may quickly reassure and welcome us (like the lobby of a comfortable hotel, for example), or may alienate us and intensify our anxiety (the lobby of a dilapidated hotel, or courts, banks - and hospitals, for example).
So territory is important in the respect that its quality will affect the feelings and confidence of our patients and visitors. They are entering 'our' territory, but it must appear that it is open, friendly territory into which people are welcome, and in which there is no effort to remind them of their temporary, inferior, visiting status to somewhere they have only minor and limited rights to enjoy.
In the book, we discuss the importance of the very specific territory of the patient's bed and the surrounding area and how seriously it needs to be recognised and respected.
In organisational terms, territoriality - the sense of possessive and exclusive occupation of space - can be a pretty serious obstacle to good service when it inhibits the free flow of people, information and patients. Clearly, there are some areas in hospitals which need to be exclusive and secure, but such measures are justified only on the basis of safety, privacy and security, not on the empire-building ambitions of the personnel. Demeaning rules and restrictions are not unknown in large institutions, and when they serve only the self-aggrandisement of departments or individuals they should clearly be opposed.
HCPs are used to working in the most basic, sometimes hostile environments, and often manage to rise above the limitations. However, wherever it is possible, HCPs themselves should feel that their working territory is supportive and humane for them, and that there are places where they are safe, can relax and let off steam. HCPs who work in an aesthetically sterile environment are likely to be less humane than those in more attractive settings; and those hot-desking on the tail of a succession of others, less attentive than those who have some kind of attachment to their room or place of work (however tentative).
The territory allocated to porters, or receptionists or to nurses' stations requires careful thought and planning: as well as serving necessary utilitarian functions, does it also give the people some sense of reassurance and belonging?
We need also to remember the power of first impressions. As with the people we meet, we almost instantly make judgements about territory: does this place reassure or disturb me? Is entry through this door encouraging or off-putting? Is my purpose in coming here supported or undermined by what I see?
F The Complexity of humanity
A.Revision and discussion
- What are some of ways in which human beings can be wounded and abused psychologically, at home, at school, at work, in society at large? What are the different ways in which people respond to or cope with abusive relationships and what effects do they have on their lives in general? What are some of the characteristics of bullying at work? How should knowledge of these sad realities influence our perceptions of other people and our communications with them?
Probably the most serious damage is done to people who are made to feel that they are worthless in one way or another: unlovable; incapable; stupid; ridiculous; incompetent; useless - all those descriptions which can destroy any sense of positive identity or self-worth, of confidence and hope. Common also is treatment which establishes not just a passively empty or negative self-image, but creates an actively negative one: naughty; wicked; hurtful; disruptive; dangerous. The former tends to create depression and despair, caution in relationships, fear of rejection; the latter an identity which may find its fulfilment in active, negative behaviour. Tell a child often enough that they are hurtful and wicked, and that characterisation may become embedded in their personality so they come to know no other way of behaving. (Once someone is labelled 'mentally ill' or 'criminal' the same self-reinforcing process can also take over.) Both these kinds of treatment happen in the workplace and school as well as in the home.
Human ingenuity creates a multitude of ways in which others can be hurt and damaged. Rejection in all its forms - by a friend or lover, by an employer, even by a community - can further damage those who are vulnerable, while those with more robust identities may be able to brush it off, even at some personal cost.
Abuse may take physical forms. Victims may react in a host of different ways from retreat into self-protecting withdrawal from human contact at one extreme, to violent rebellion and retribution at the other.
Much human behaviour is driven by avoidance of some of these damaging experiences, especially rejection and ridicule, and by the search for approval and acceptance. Even the most confident may need the approval of others, but for the vulnerable and insecure it is essential for life. Much negative behaviour may be driven by the need for attention - because any kind of attention, even disapproval or rejection, can be preferable to being invisible or ignored. If a child is never given loving attention, the only way to be noticed may be by being naughty and disruptive: that way at least you feel you exist. Such processes are not confined only to childhood.
Readers will want to elaborate this theme for themselves far beyond what is written here because it is so central to our understanding of other people. What we see superficially in the behaviour of others does not always represent the truth of their feelings or what they want to achieve: we may, for example, be seen as just another in a line of damaging authority or parental figures an individual has endured during their life, and be treated in ways which have been discovered to be safe - obsequious conformity at one extreme, for example; resentful rebellion at the other. It may take time, patience and skill to get close to the real feelings and wishes of such an individual, and so be able to help them.
Reacting only to the apparent communications and behaviour of others is always a sign of amateurishness in human relationships; even in our most intimate and secure relationships there will be times when sensitive interpretation of what is happening will help us avoid misunderstandings and problems. The best communicators reach beyond surfaces instinctively and spontaneously, and most of those will have acquired and developed their skills through patient study and practice. A few have the 'gift', but most of us need to work hard at it!
- Chapter 12 offers the proposition that many mental disturbances belong at one end of a continuum which includes so-called normal or undisturbed behaviour and feelings - that mental illness is an extreme form of experiences that everyone has in some measure, even though its expression may be dramatically different. Consider and test this proposition against your own experience of human psychology and your reading.
As I sit down to write this piece, I have just returned from visiting a good friend of mine who has bipolar disease, who is now in a psychiatric hospital suffering from a serious manic period. His brain is stuffed to bursting with feelings, thoughts and memories, many of them negative and painful, and he is quite unable to emerge from the pressure and torture of his mind to communicate normally with others, to listen, or engage in any kind of sustained exchange. He talks rapidly and constantly about the memories and events that are obsessing him, going over and over the same details, representing his preoccupations in a style that is assertive and argumentative - and, from a normal perspective, utterly irritating and alienating. He has (temporarily, we hope) lost his ability to relate with others and to hold in any kind of balance the tough things that have happened to him: he has crossed a boundary.
In this case, what we see is a chaotic, uncontrolled version of the same person who, at other times has managed to stay in control. The usual mechanisms of internal management have broken down, and he's a helpless victim of his turbulent thoughts and feelings.
In this instance, I think it is clear that what is now an illness for my friend, is actually an extreme version of what many of us experience from time to time: a glimpse of the possibility of everything becoming just too much to bear and of our losing control. In times of extreme pressure, disappointment, grief, whatever, our control mechanisms can feel under threat, we sense a black hole into which we could fall. Depression, also, may become an illness when a similar boundary between control and chaos is crossed.
I cannot explain the detailed mental processes or the physiology which account for some people having these kinds of illnesses, but I think the psychology is sometimes more understandable than we may realise. And for some of these illnesses, the preliminary stages may be evident. I know, for example, that for several months before my friend really went off the rails, there were signs that his mechanisms of control were under threat and weakening. Unfortunately, part of the syndrome can be a lack of self-awareness of deterioration, so it can be very difficult to help. For some, however, the decline into illness can be very rapid indeed, with little or no warning.
The expression of mental illness can also be bizarre in the extreme - hearing voices, paranoia, absolute withdrawal from human contact, obsessive behaviour, self-harm, violence against others too - behaviour seemingly far beyond the realm of the normal and certainly beyond the reach of normal communication and relationships. Here, the continuum from normal behaviour may appear to be absent, or actually broken, but there are almost certainly deeply-buried links which may or may not become evident. Research does suggest that there is a genetic component in predisposition to mental illness, but that interaction with the environment is equally a determining factor. Pharmacogenetics is beginning to reveal how drug therapy may be tailored specifically to the individual patient.
While reliable explanations of the aetiology of psychosis do not yet exist, the behaviour of psychotics does reflect the range of ordinary human behaviour with which we are all familiar - but in an extreme and often frightening form, maybe without conscience or remorse. Whether people can be entirely tyrannical and wicked (for example) without being clinically sick, is an interesting question - which would take us far beyond the boundaries of this book, I regret to say.
Mental illness can sometimes be an extreme, explicable reaction to intolerable circumstances (R.D. Laing said a rational response to insane circumstances). There are also times when its onset results from processes which are, as yet, mysterious to us. While some of the mentally ill are dangerous, and require containment, the great majority are ordinary people who have crossed a critical boundary - a fate to which we are all probably vulnerable, and which we all should work hard to avoid as far as is possible. Crossing that boundary will often mean that treatment of some kind is needed; whether it is psychotherapeutic or pharmaceutical, or a combination of both, is a matter only specialists can decide. What we can all do is approach mental illness with a measure of rational appreciation, treat the mentally ill with respect and compassion and make sure they get the kind of help they need.
- What are some of the influences and pressures in the world at large which might lead people to be hyper-sensitive about risks to health and turn healthy people into the worried well, into hypochondriacs or health pessimists? What kinds of changes and communications might help reduce these effects, both at social and individual levels?
There are three principal sources of anxiety about health: facts, myths and risk-aversion. There is a confounding interaction between them which can be difficult to disentangle.
First, there are genuine health hazards and risks in the world which have a sound basis in scientific fact, but often have a low probability: injury from vaccination, bird flu, contaminated products, adverse drug reactions are among the commonest. These are what Peter Sandman calls 'low-probability/high outrage' events - the negative feelings associated with them are hugely disproportionate to their likelihood. (These contrast starkly with high-probability/low outrage events such as illness and death from smoking, alcohol abuse, obesity, about which there is generally far less apparent concern.)
There are also social hazards and risks which are genuine, but with low likelihood of occurrence: terrorist attacks, being a victim of crime, being in a plane crash, child abduction, for example. These have their high probability/low outrage partners, such as injuries and death from road accidents and accidents at work and in the home.
So, there are hazards and risks, but perception of them and their probability is irrational. The facts of low-probability events which cause high outrage are lost in the dread which is felt at the drama of the (unlikely) events, and they segue into delusions about great and immediate danger.
This process raises levels of personal and social anxiety and contributes further to the problems which follow.
At the slightest hint of a risk, especially one which affects children, (the MMR vaccination scare and the use of mobile phones and computer radio networks in schools are examples), there is often immediate and substantial outrage even in the absence of evidence or in the face of contrary evidence. This is particularly true of risks which are seen to be generated by others - politicians, manufacturers, scientists, local authorities and so on - about whom there is often an instinctive attitude of suspicion.
Risk-aversion is one of the results of the complex processes through which people process their understanding of the hazards and risks of life: until there's evidence that something's safe, it's not acceptable. An extreme example is the reaction to the risk of children injuring themselves while playing in public parks: there's been so much controversy about the responsibility for injury, that many local authorities have closed their play-parks and parents have prevented their children from having a normal kind of childhood - with its inevitable minor and major risks. A fantasy of zero risk has been created, as if life could be 100% safe if there was sufficient legislation and control.
In this climate, those who are slightly anxious or vulnerable psychologically for one reason or another, can easily believe that life is a hazardous and risky business and is to be treated with great caution. Everything which hints at there being some risk in the environment increases their level of anxiety, to the extent that where there's no hazard or risk at all, something unpleasant is imagined.
This kind of anxiety can be related exclusively to health or other matters. When health is the focus, and there's a fear of illness and of the risks of everyday life, any of the slightest variations in the body's or mind's normal functioning can be interpreted as the symptom of minor or major illness; news of an outbreak of some unpleasant disease or media coverage of any kind of medical story can prompt belief that illness of that kind is about to strike - and so on. Humans are infinitely ingenious at finding was of distressing themselves!
Hypochondria and allied disturbances may also have their sources in other aspects of personality and society, and may just be the arbitrary expression of insecurities and anxieties which have little to do with health. Being sick may satisfy emotional needs for attention or dependence, or provide an escape from difficult circumstances, or be an expression of other kinds of psychological vulnerability.
The remedies for this dangerous modern disposition would require a book to elucidate. There are social and individual components which require quite different kinds of measures. Here are some of the issues for consideration:
At the social level:
- Education about risk and probability
- Including rational assessment of risk and the acceptance of some level of risk in all aspects of life
- Education in the use and testing of evidence (it's important to note the phenomenon of the popular need for evidence to disprove the existence of a risk (almost impossible to provide), rather than examination of the extent to which evidence does or does not support the assertion. In the popular mind, 'There is no evidence to support this' does not counteract the demand for evidence to demonstrate that there is no risk.
- The moderation of outrage to be proportionate to the seriousness of harm and the likelihood of occurrence (e.g. politicians not playing up, for their own purposes, the dread relating to very improbable events)
At the individual (patient) level:
- Understanding of the causes for irrational health beliefs and behaviour; dealing with them as far as possible
- Helping patients assess the state of their own health more accurately, providing both evidence (blood pressure, blood sugar and so on), and common sense symptom diagnosis (common, non-threatening causes of headaches, for example; dietary causes of variations in bowel movements; non-serious aches and pains)
G Working together
A.Revision and discussion
- When an HCP's resources, or those of a health facility are limited, what help and support can be found beyond the usual boundaries, in the locality, for example, or by using volunteers or patient organisations? What creative and practical ways can you find to spread the burden of care and support of patients beyond limited, professional resources?
This is a large and ambitious question. We know that social, economic and educational issues influence health in radical ways (the death rates following cardiac surgery are higher in poor socio-economic communities, independent of risk factors such as smoking and obesity, for example), and so there are major factors beyond the direct influence of any HCP. But there is also much that can be done:
Healthcare, so often a relatively isolated, distinct activity largely separate from the day-to-day life of communities, needs to be much more deeply integrated and involved within societies, so that knowledge and responsibility are shared to a much greater extent. The concept of healthcare as a centralised, specialist resource, located in (maybe remote) buildings full of experts is actually hostile to public health - because it eliminates a sense of local, personal responsibility, and largely ignores the huge resources of communities.
An example may help. Some of these issues are being addressed in a small, rural hospital in northern Thailand, where finance and personnel are inadequate to meet the needs of a considerable, dispersed population. First, volunteers have been trained in elementary physiotherapy to work in the villages, thus reducing both the frequency of major expeditions for patients and their families and the pressure on limited resources at the hospital. Instead of a centripetal pattern of activity with the hospital at the heart, the model is of a constellation of activity taking place across the community, in quite loose association with the hospital.
Resources (principally buildings) have been provided for HIV+ patients and patients with disabilities to organise their own support groups within the hospital grounds and in some villages. These are active and lively groups which provide not only support in medication management and rehabilitation, but also raise money, organise concerts and sports activities. Patients have access to HCPs, but their need for professional attention is far less than it would be without the groups.
Cataract is a major problem among the elderly in the area. Once a year, a three-day session is organised in which two or three hundred cataract operations are performed by a visiting team of specialists. While this is obviously hospital-centered, it is an imaginative and effective way of very efficiently meeting the needs of large numbers of people. It is also a major social occasion, with families of patients camping out in the hospital grounds while their relatives are treated.
The Asian model of family involvement in healthcare is, in many ways much better than that in the West. In Thai hospitals, the families of inpatients often bed down in the wards or in the corridors, and take responsibility for washing and feeding the patient, and for providing care and support through difficult times. The boundaries of formal healthcare are more permeable than elsewhere.
All over the world, there are patient groups with a history of effectively supporting patients with complex or chronic problems and, as suggested in the book, these groups may sometimes bring much greater knowledge and experience of some conditions than HCPs who may encounter them only relatively rarely. Knowledge of existing groups is an important resource for HCPs and their patients.
On a daily basis, HCPs are confronting the damaging effects of lifestyle choices, which are essentially public health problems particularly those relating to smoking, obesity, lack of exercise, unsafe sex and alcohol and drug-abuse. These alone account for very high levels of morbidity and mortality. While large shifts in public behaviour can probably only come about from persistent, long-term, national campaigns (seat belts and drink-driving are good examples in some countries), it is possible to make local efforts which rise above the wastefulness and social futility of dealing with problems on an individual, case-by-case basis.
There are enterprising community pharmacists who have made it their business to provide services and run groups for all kinds of conditions and problems. Pharmacies are ideal locations for such activity - distributed among communities, often in their social or commercial hearts where people conduct their ordinary everyday business, close to home.
We know, for example, that the survival rate for heart attacks is dependent largely on the effectiveness of response in the first minutes after an event: rapid, effective CPR saves lives. How many people in the community know how to give effective CPR? Wouldn't this be a great skill to spread in communities, especially those remote from emergency care (and those for whom water is a hazard)? Wouldn't education in elementary First Aid techniques reduce the number of visits to emergency rooms for minor troubles?
Though we know the hazards of amateur interventions in medical matters, we also know there are societies where local people have expertise in delivering babies and treating common ailments effectively, and that, as communities, they have not entirely abrogated responsibility for their healthcare.
As healthcare in many parts of the world becomes more glamorous and hi-tech, we are moving further and further from a model of social responsibility for healthcare and passing it more and more to the community of untouchable experts.
Look for patterns of disease or problems in your patients, and see if there are ways in which some aspects of their care could be managed differently, removing professional healthcare from the very centre and passing responsibility back to people.
H Tough Topics
A. Revision and discussion
- What do you see as the major challenges in the effective communication of risk to patients? What elements in the data and information available, and in the patient's knowledge and psychology make it a particularly difficult task?
Here are some of the major issues:
- Patients may not understand that there is some element of risk in all medical interventions
- Patients may be unfamiliar and uncomfortable with uncertainty, and expect greater certainty than is possible in science and medicine
- 'A pill for every ill' and allied myths and misconceptions may make patients underestimate the complexity of diagnosis and disease
- Few people have a rational perception of risk - disproportionately fearing rare and unlikely events, while being blind to common, everyday dangers
- There is generally a very poor grasp of the differences between association, correlation and causality and a tendency to ignore evidence in the face of feeling (positive or negative)
- Few people are familiar and confident with statistical expressions of risk or have a grasp of the concept of randomness
- While the risks of many medications, surgical interventions and other procedures are documented and well known, they may not be known at all or be less than clear in the unique circumstances of therapy for an individual patient
- Accurate assessment of risk requires comprehensive knowledge of all contextual factors and variables, including patient history, habits and idiosyncrasies, which is often difficult if not impossible to achieve in clinical practice
- In some respects, the question, 'How likely is this to happen to me?' is both difficult to answer in ways which will satisfy a patient and hazardous because someone is the 1 in 10,000 and rare events do happen
- The best situation for a patient to process risk information and come to a decision about their own therapy is in a trusting relationship with an HCP, who patiently explains all the options and alternatives and provides time for discussion and reflection. It's very important that the process allows the patient's feelings to emerge, for them to be recognized and negotiated, and placed within the context of probability. Facts, however, can be a poor counterbalance to strong feelings and the gap needs to be narrowed before a good decision can be made.
- Patients will be much more willing to take risks in the context of a trusted, supportive relationship, where there is a sense of partnership taking any course of action.
- What are some of the illogicalities and inconsistencies in understanding risk among many populations? Why is it, amongst other things, that some serious risks are paid little attention while minor ones are exaggerated? What impact does the source or cause of the risk have on perception?
Some of the issues are dealt with under Q4 above. Much of this is dealt with in the book (Chapter 19), but important aspects to remember are:
- Familiar, common risks (accidents in the home and on the roads, for example) become almost invisible while rare and dramatic risks tend to occupy a disproportionate amount of attention, even when the evidence is thin or causality unproven. (The silicone breast implant crisis in the US, affecting the welfare of millions of women, was caused solely by anecdote and assertion, without a shred of plausible evidence. Like the UK scare about autism and MMR vaccine, it was later shown to be utterly groundless.)
- Many people will take big risks (even of death) when they are in control and making the decisions (extreme sports are the most obvious example), but react very strongly to even small and remote risks to which they or their children are or might be subjected by the actions or decisions of others (nuclear waste, school security, child abduction). These reactions are driven by fear, which overwhelms any rational assessment of likelihood or seriousness. They are intensified and exaggerated when the perpetrators (who may be local authorities or individuals, for example), are distrusted, despised or demonised.
- What are the some of the positive and negative effects that sex and sexual orientation can have on individual psychology and health? What are the particular aspects that impinge on healthcare relationships and therapy?
- Sex and sexuality are powerful influences in the lives of most people. In spite of the public obsession in Western societies with sexual issues and images, there is much private uncertainty and pain. Probably relatively few people are entirely comfortable or fulfilled in their sexual identity and activities, but many do get by without serious problems.
- Feeling comfortable with one's sexual identity and having a reasonably satisfactory sexual life seems to be important for most people, and, when all goes well, is a source of confidence and optimism - and of mental and physical health. Amongst many other things, it frees people to take greater pleasure in life and relationships
- Those who have unsatisfactory sex lives for one reason or another, or are poorly reconciled to their sexual identity, needs or orientation, may suffer from all kinds of emotional and mental pain and maybe disturbances in behaviour too. Depression is an obvious symptom of such problems, but they may also express themselves in more blatant physical symptoms as a displacement from the real cause. HCPs will see many patients whose sex lives are unsatisfactory for one reason or another, and, sometimes, those problems will be an integral and important aspect of their needs.
- Patients may be very reticent to talk about their sexuality at all. HCPs need to be very patient, accepting and non-judgemental in their enquiries, bringing into the open issues which are maybe embarrassing or painful.
- What are your attitudes to gays and lesbians? If you feel any measure of anxiety, disapproval or rejection, what is the source of those feelings? What are the techniques of dealing with negative feelings about patients of any kind in a professional relationship?
- The first two questions are ones that only you can answer!
- Disguising critical or negative feelings which might be damaging to a therapeutic relationship is not easy, but it is an essential skill for effective practice. The first task is managing non-verbal reactions, trying to ensure there's no 'leakage' of feeling in your facial expression and tone of voice, particularly. Dealing with someone you feel uneasy with, or disapprove of requires a good act (like an actor or actress), ensuring that you concentrate on your role as concerned professional, keeping your distracting personal feelings well hidden. Empathy is useful and important, because it will help you get beyond the superficial obstacles of your feelings and take you closer to the reality of the individual. While this might increase your sense of shock or distress, your attention is focused outwards, with the patient as the subject of your study rather than your feelings about them.
If you have strong initial feelings of unease or hostility, this protective act is even more important, as is suspending any kind of firm conclusion until you have passed the stage of first impression and have rather more evidence on which to base a judgement. Even so, making judgements isn't really material to doing the job, except when they relate to problems the patient is presenting.
There will be occasions when expressing some measure of personal feeling is helpful. For example, when a patient's problems are associated with loneliness or unemployment, and they are unwashed it may be appropriate to raise the issue of personal hygiene. In response to someone who is rude or aggressive, it may be essential to tackle that by explicit discussion.
The danger is being led by one's own idiosyncratic, inner feelings which are not relevant to the patient's experience and needs nor to therapy. Disapproval of the moral quality of a patient's life has no place in everyday healthcare communication, and caution in expressing any kind of view is needed even in response to an invitation to do so.