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.