There is good and relatively not-so-good end of life practice; the latter especially when it comes to the homes for the elderly, where the needs and wishes of residents can be known and discussed with the relatives at ease but which unfortunately does not always happen, especially due to current circumstances. Nevertheless, as a GP I have of necessity reflected on these situations quite considerably and indeed have had patients of my own. The lack of clear guidelines makes things difficult for all, even if there is agreement between the doctor, the patient and the relatives. Be that as it may, two short cases will illustrate what I mean.
In the first case three health professionals from a home came to see me. One was a nurse, the others health care workers. All caring women, they came to speak to me about what they felt was a bad decision of a resident who had returned from hospital. This case happened some time ago (in deference to confidentiality). They told me the patient suffered from dementia and that when she was discharged they were given orders to allow her to die and to stop feeding any fluids. They were dismayed. Many medical decisions may not make sense to the lay person and in this case the history was very relevant. They told me that they sent her to hospital because she had a urinary tract infection. According to them she was not dying. They also clarified that they were given instructions that she was allowed to take some water but only for her medication, which was still necessary to avoid symptoms.
I asked who the consultant was and they said they did not know but that they had the mobile phone of another consultant geriatrician who was the doctor they called at the home. After inquiry they said that actually this doctor also agreed with the consultant. I called him there and then and, knowing him made things easier. He was a good physician and what we would say in Maltese as tar-ruh. He explained that this patient was terminally ill; that she had been admitted before, every time for infections which always turned out to be sepsis (an infection which spread through the blood stream through the body). Each time the organs had been damaged to an extent and in this occasion her important organs, such as the kidneys, liver, etc., started to fail. Giving her food was not an option as the intestines could not manage them at this stage. The important point is that with continued medical care her life would have been extended only to be admitted again with another sepsis within a week or two causing distress to a dying patient.
Clearly it was end-stage dementia. He told me that the consultant discussed this with the relatives (whom these nurses described as nice people and were also surprised with their decision) and they agreed that prolonging their mother’s life in this way would be disproportionate treatment and cause her more suffering and transfers to hospital. The patient was 95 years old (not that this makes a difference to the decision). He explained that her body could not handle food and water. She was on an antiparkinsonian drug to control symptoms only, which is why they allowed sips of water for the medication.
Clearly this was the right decision and one would wish things always happened this way. I explained to the nurses. They were of course distressed because the old lady was to them a “very sweet lady”. This indeed is the difficulty for health workers and nurses who spend more time with patients and become even attached at time. They mourn sincerely when someone dies. If there was any mistake here it was perhaps the lack of understanding due to lack of communication and explanation. I am sure that the geriatric doctor would have explained; but this is usually done to the accompanying nurse and we know how messages can be changed down the line. There is no system of communication other than a discharge letter and the explanation of the doctor. Certainly, what would help is an explanatory letter and proper handing over from hospital nurses. But as far as patients and suffering goes, we ought not to prolong life at all costs. This is not euthanasia and is accepted by all religions and secular society.
The second case involved an elderly man in his late 80s who was sent to hospital three times during the Covid crises, every time because of a cough. The cough always turned out to be due to his heart failure. Every time he was discharged his doctors would decrease the diuretics (pills which help you pass urine) and, with no follow-up in the home in which he was, he would inevitably have his lungs filling up with fluid again in two weeks. I got to know his story through his relatives. Every time he was discharged, he would have to stay in an intermediate home in Msida for two weeks quarantine. During all this time he had no means of communicating with his family. He was also admitted with very low blood sugar levels and after that last admission he expressed repeatedly that he did not want to go to hospital anymore and wished to be left alone.
Nevertheless, he was admitted again, this time for several weeks due to his kidney and heart failure. At one point, in hospital, he refused treatment and for his bloods to be taken. It turned out he was dehydrated and when given something to drink he cooperated. He continues to insist however that he does not wish to be admitted anymore and seems to have accepted his fate. He is of very sound mind and quite talkative.
What is absent here is not an Advance Directive (which is a legal document and which may even be difficult to change), but a more modern approach which involves the patient, relatives and the carers. This is simply Advanced Care Planning. You plan ahead and repeatedly visit the decisions of the patient. They are given time to discuss with relatives. They know the consequences. They can be kept comfortable if they persistently refuse admission to hospital, extraordinary, disproportionate and other treatment which, for them, simply prolongs the inevitable. Again, this is not euthanasia but bad communication and lack of protocols to follow plans which seem to be too burdensome to be introduced, leaving many of our elderly at the mercy of what is supposed to be medical care. Care, however, does not aim to cure all the time. Palliative care is there also for the elderly.
We need good training and protocols and for health care professionals to understand what is killing and what allowing to die is – which is morally allowed. People live longer because of our excellent medical care. We ought not to spoil all this at the end of life because of over-treatment and not seeing what the patient actually wishes. Keeping people comfortable is often good enough. This may indeed mean that certain medications have to be given but if our homes for the elderly are to succeed, we need to improve the system with good channels of communication and planning ahead with patients, relatives, GPs, the home carers and nurses and the hospital. Nurses cannot depend only on a discharge letter. Hospital nurses need to understand what is going on to be able to communicate well with their colleagues at these community homes. Otherwise a blaming-the-doctor culture, something which I often perceive in lectures among health professionals, will prevail. In reality all need to do their part, from administration to create the protocol and training, through doctors, nurses and other carers.
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Pierre Mallia is Professor of Family Medicine and Patients’ Rights and teaches at the University of Malta. He chairs the Bioethics Research Programme of the Faculty of Medicine and Surgery. He also chairs the Bioethics Consultative Committee. This article is his personal opinion and does not represent the opinion of any committee or Board he serves on.