Lessons from the end of a life

Ros Levenson

independent researcher and policy consultant, and visiting fellow, King�s Fund ros{at}roslevenson.demon.co.uk

Abstract

This article tells the story of the last month in the life of an 83 year old woman with dementia. It highlights good and bad practice and draws attention to issues about end of life care and about how risk avoidance and a rigid approach to clinical governance can impede humane care. It also calls for better multidisciplinary communication within teams.

This is the story of the last month of my mother�s life and the final chapter of her journey through dementia up to her death just after her 83^rd birthday. It is a story that included extreme kindness and sensitivity from some doctors, nurses, and other health professionals, alongside crass, ill judged defensiveness from others. There was, too, an aspiration for multidisciplinary teamwork that was not matched in reality.

After almost two years in a care home, which followed on from several years of gradually worsening dementia, my mother became rather unwell and very much less responsive than usual. She was taken to hospital, where this story begins. She was put in a medical assessment ward, where her condition was investigated, but no specific ailment was diagnosed. It was noted that she was apparently having trouble swallowing.

The speech and language therapists duly did their assessments, and unsurprisingly, since my mother was asleep virtually all the time, they declared her "nil by mouth." After a few days, one of the nurses told me that they had tried to put in a nasogastric tube, but had not been able to do so, and that they intended to try again later, and after that, my mother would need a PEG. I don�t recall any explanations of what a PEG (percutaneous gastrostomy tube) was, but I knew what it was from my work. I also knew that my mother would not want to have a PEG. She had made it clear that she hated being "messed around with," and in recent months she resisted, when she could, even having her nails cut or her hair washed or having her dressings changed.

The sad truth was that she had been desperately miserable for a long time, and since my father�s death some nine months earlier, she had declined even more steeply. For some time now she had taken no pleasure in anything, except maybe eating a little piece of chocolate. She could no longer take an interest in anyone or anything, and would often be silent throughout our frequent visits. If she expressed emotion, it was to say that she wanted to be dead, or to resist having things done to her. The CPN and psycho-geriatrician had been involved, but to no effect. My mother was also unable to move about, as a result of old orthopaedic problems for which no further treatment was possible, and she had awful leg ulcers which refused to heal, and which had required surgery quite recently. So I was quite alarmed at what appeared to be an assumption of an automatic progression towards tube feeding. I said that while I was happy for the nurses to try the nasogastric tube to see if this could get her through an acute period of being unable to swallow, I had doubts about the PEG as a longer term option, and needed to see the doctor for more discussion. I was told that the ward round in a few days would be my opportunity to do so, and nothing would happen before then anyway, as the operating list for PEG insertion was after the ward round had taken place. It was a little shocking to see that nasogastric feeding and then a PEG was simply assumed to be the right course by the nurses. Had I not raised concerns, I do not think there would have been any pause in that course of planned action.

My discussion with the consultant took place during a ward round, and my son came with me. I had prepared for the meeting by reading as much as I could, and, more importantly, by talking at great length with my immediate family, some friends, and those who knew my mother well. When the consultant came round, I asked if we could talk somewhere privately, rather than on the open ward. The consultant immediately agreed to this, although I do not think he was going to suggest it, and he led us and his team into an office where we could speak. On this occasion, and in my subsequent meetings, he was excellent. He listened carefully, did not hurry, and to my huge relief, he seemed distinctly unenthusiastic about putting in a PEG. He clearly gave great weight to what I told him about how my mother seemed to have had enough and was tired of her life as it was, and had expressed her views on not wanting to be "messed around with," both for herself, and also, years before, when she had spent long vigils at her mother�s bedside when her mother had lost most of her faculties after a stroke. We agreed that the over-riding priority was to keep her comfortable and maintain whatever dignity was possible. He made some decisions on medications, if and when they were needed, and decided to take out the IV drip and replace it with subcutaneous fluids, for her greater comfort. It was a sad time, but I felt that I was able to say what I was sure my mother would have said for herself.

And so things continued for several days, with my mother sleeping around the clock and showing no signs of distress. After a few more days, she surprised us by having periods of being awake, although she could not speak or communicate in any other way. I was anxious to know if she could, perhaps, now swallow again and I asked the doctors this. They did not know, but said that she should be reassessed by the speech and language therapist, although, as we were approaching a weekend, the nurses could try, rather than wait for that specialist assessment. I was pleased to hear this, and when, later, I asked if the nurses had tried to assess her swallowing, I was told that there were 28 patients and two nurses and they did not have time. I had to say that I had only one mother and she had no one to look out for her but me, and I insisted on an assessment being made, which it was. However, in spite of a greater apparent alertness, she could not make any attempt to swallow. This assessment was repeated at intervals by nurses and then again by the speech and language therapist after the weekend.

This is the point where it all began to feel unreal. My mother was not eating or drinking, and she spent most of the time asleep, and her wakeful periods were without any evident interaction with the world around her, except that occasionally she mustered strength to try to push a nurse away. My daily visits would be spent alternating periods of silence and holding her hand, stroking her hair, with attempts to have a one-way conversation. My mother�s conversational skills had been in decline for a while, and she had not been able to hold a conversation, as such, for some time. But now, her word-less noises�a bit like a baby�s babble�gave the illusion that if only she could speak, we could actually have a conversation. I knew this was not so, as her intellectual and conversational skills would not be magically restored, but it was hard to believe it. It began to feel as though this period would go on for ever, although I knew it could not. It was strange to visit each day and see virtually no change, even though she was not able to eat or drink, and I knew, therefore, that the end could not be far off.

Then one day, about 20 days after the admission to hospital, one of the nurses caught me on my way in (a rare occurrence, this, as I usually had to seek them out when I wanted to talk to them). The nurse asked me if I would reconsider and allow a PEG to be put in. I was utterly shocked. I had spent almost three weeks coming to accept the inevitable, but at least taking comfort from knowing that my mother would not have to endure any further invasive treatments. I asked why the nurse was asking me this. The nurse said, "It might give her a chance." "A chance of what?" I asked. The nurse looked uncomfortable, and said that the doctors had felt that as she was a bit more alert than they had expected, they thought she should have a chance. The nurse was unable to answer my questions on what had changed, and concurred that I needed to see the doctor to answer my questions. Through persistence and a considerable degree of obstinacy, I managed to find out where I could find the junior doctor that afternoon as the consultant was not on site. The young doctor saw me and said that they had discussed my mother that morning but it was not a PEG that was being suggested, but a further attempt at manual feeding, just to maximise her comfort, if she was alert enough to try. I was relieved at this, and rushed back to the ward to clarify this with the nurses, as I felt they had simply misunderstood.

This was to be the low point of how the system worked. I told the nurse I had been speaking to and another nurse what the doctor had said. It was soon clear that this was not just a simple misunderstanding. One of the nurses said that the speech and language therapist had said again that it was unsafe to feed my mother orally, so they could not try to do so. I said that I appreciated that, but the doctors were saying to try nevertheless. What, after all, was to lose? One nurse said, "That�s all very well, but who will protect my back if it goes wrong?" She began to lecture me that if she tried to feed my mother and she aspirated, there would be forms to fill in for clinical incidents, etc. There was no mention of my mother�s needs or best interests. I asked the other nurse if this was why they were suggesting a PEG�so that they did not have to take the risk of feeding her. The nurse did not deny it. I felt as though I was being asked to agree to a course of action for my mother that none of us really felt was right, so that nursing staff, who clearly felt exposed to potential blame, need not do what the consultant and I agreed was in my mother�s best interests. We left it that day with me speaking to the consultant�s secretary to arrange a further discussion with the consultant the next day.

The conversation with the consultant on the next morning was very helpful. I explained that I was confused about why there seemed to be a change of direction, and said I was concerned that staff defensiveness seemed to be uppermost rather than my mother�s needs. He agreed that that did indeed seem to be the case. We discussed the pros and cons of a PEG once more, and once more agreed that it was a bad idea for my mother, in view of her advanced dementia, physical frailty, and her wishes, as far as we knew them. He explained that he wanted my mother to be given some food to see if she could take it, even if it was just for a comfort, rather than significant nutrition. I said I wanted that too, very much, but the nurses were relying on the speech therapists� opinion that it was unsafe. I explained that I could not know what was safe or what was an acceptable risk, but what I knew was that there seemed to be little to lose. Above all, it was not acceptable for there to be a professional stand-off, and for the consultant to order one course of action and for other staff to go in a different direction. Our discussion was useful, calm, reflective, and, from my point of view, supportive. The consultant and I explicitly recognised that this was a difficult situation for all of us. The conversation resulted in his intervention, alongside the ward manager, to bring about a trial of feeding, and my mother successfully took a few spoons of food and a little drink, much to the surprise of the nurses. I was relieved, not because I thought this would lengthen her life, but because I felt there was a world of difference between artificial feeding through a stomach tube, and making every effort to encourage and enable natural feeding. I profoundly wanted them to try the latter, as much as I did not want her to have to endure the former.

But after two days, once again I went in and found the nil by mouth sign up. This time the ward manager was on duty. She was generally helpful and hands-on and knew her patients well. However, she knew nothing about this renewed notice but found out that a speech therapist had been round again, and declared my mother unable to eat: back to square one. I was in despair, since nothing had changed except a different speech therapist doing the rounds. Again I said that whatever the decision, it had to be a multidisciplinary decision, not a result of different professions taking unilateral action. The ward manager sorted it out once more, and again my mother was successfully fed for a few days.

Things took their course and after a few days my mother was clearly too weak to even try to eat. I knew that would happen. That was acceptable in a way that not trying to feed her was not. She went into a decline quite suddenly, and died 28 days after being admitted to hospital.

In all of this, consultant�s kindness, patience, and fundamental respect for my mother was wonderful. It made an almost unendurable experience possible for me, and I am sure that it was in keeping with what my mother wanted, and therefore helped her too. It was clear that he and his team found it a painful process, in their own way. They were willing to respect a treatment plan that withheld heroic measures, but I felt that it was not the usual course of events for them or for their patients.

It seemed that the nurses found it very difficult to care for a patient without doing what they considered was everything possible to lengthen life. They also found it hard to be in a situation where they feared personal blame. The junior nurses and the healthcare assistants who were much more involved in physical care seemed more able to recognise that there was more to care than medication, surgery, and invasive procedures. The ward manager saw that clearly too, but the middle grades seemed less aware of this.

For me, it was a terribly hard time. I cannot say that I found it a difficult decision to resist the PEG on my mother�s behalf, but it was a horrible decision to have to take. Not that it was my decision, technically, but it would be disingenuous to pretend that my views did not carry huge weight with the doctors since my mother could not give consent to treatments.

But the worst aspects of this sad chapter were a result of professional defensiveness, which at times, over-rode my mother�s needs, her known wishes, and a presumed ethos of multidisciplinary working to meet her needs. It was truly horrible to have to deal with the nurse who lamented that she would have to fill in incident forms if things went wrong. I felt sorry that she felt so unsupported that she had to make this my problem, but it was inappropriate and unacceptable behaviour, and it came my way when I felt least like dealing with it. It was also quite awful to feel that the nurses, at times, were trying to push the PEG option so that they did not have to become involved with the less invasive but (as they saw it) riskier (to them) option of attempting to give my mother some food. The speech and language therapists no doubt are the experts on assessing swallowing, but they seemed to be out of the loop when it came to team decisions, so that when team decisions were made, or when the consultant decided on a particular approach, it seemed to be susceptible to unilateral alteration by the speech and language therapists.

One last thing: many of the nurses and some of the doctors found it hard to stop short of maximum intervention to prolong life. But in the openness of a public ward where patients and visitors see and share so much of what is going on, the ordinary people in and around the beds seemed to see it differently. They saw how very frail my mother was, and appreciated how far along her journey she had already progressed. Several old and frail patients and their equally old relatives called me over to ask how mum was, and all said something like it was time for us to let her go peacefully. Several said how they definitely would not want to be fed by a stomach tube if they were in my mother�s situation. This was a humbling experience and it serves to remind us that professionals in health care need to remember that there is more to life than being kept alive, and dying need not become a medical event. My mother�s consultant appreciated that; I will be forever grateful to him for that.