Good Practices in Palliative Care

A Psychosocial Perspective

David Oliviere, Rosalind Hargreaves

• Verlag: Routledge
• Jahr: 2017
• ISBN:
  9781351932592
• Auflage: 1
• Thema: Medicine
• Thema: Public Health, Administration & Care

A team of two practitioners in psychosocial palliative care and an academic have drawn together the work of twenty-eight highly experienced practitioners. Good Practices in Palliative Care: a psychosocial perspective provides detailed descriptions of innovatory practices and how they were developed, together with clear practice principles. This unique contribution to palliative care literature is suitable for a wide range of health and social care professionals at student and experienced levels and is written in a user-friendly style.

1 The patient and carer perspective

'There is only one obvious lesson to learn about other people's grief
- to believe what they say about it'

(Polly Toynbee)

We begin by considering the issues raised by those receiving palliative care services. These must be the inspiration to which good practice is a response. The patients' comments and ideas were recorded during hospice day-care sessions and from carers whose relative experienced services from primary and secondary health care teams. All were asked to share their experience of both the most and the least helpful aspects of the service they had received from the point at which they realised that a cure for their illness was not possible. The data collected is presented in the form of case studies, recorded in the interviewees' own words, and the practice issues are then discussed in relation to any relevant research findings.

Interview with Helen, a carer

Dad was 84 years old when he was diagnosed as having cancer of the upper stomach. This was in March and he died in the June, three months later. He was having difficulty eating but he had a long history of indigestion and so the family didn't immediately get concerned. Looking back, I think that he might have been undiagnosed for some time. He was constitutionally a strong man who had continued to work as a solicitor into his eighties; he had been treated for glaucoma and in the seventies had had a brain haemorrhage which had been misdiagnosed as a psychological disorder. His period in a psychiatric hospital, being thereafter in his medical records, did I believe, affect the way in which some health professionals responded to him. My mother, also in her eighties, lived with my father in a Welsh rural community. The nearest general hospital was 30 miles away as a result of which there were very highly developed primary health care teams (PHCT) in the area. There were three adult children all with fairly 'high-powered' jobs and none of us living close by. I lived about 250 miles from my parents.

It soon became clear that Dad was seriously ill arid he was admitted to the general hospital. The doctor told my mother what the diagnosis was and she telephoned us (the children); we then told my father. We were never really sure if he had ever been told directly. He was given a life expectancy of six months to a year. I was there when a hospital social worker came to see Dad and was distressed to find her very patronising of my mother as the 'primary carer' and also inefficient in following through on what she had agreed to do. I have no reason to suppose that this person was in any way typical of the hospital social work team: I think we were just unlucky in having hit upon an incompetent worker. The experience affected us in that we decided to do everything through my parents' general practitioner (GP).

Our experience of the hospital was pretty negative: no doctors spoke of Dad's condition, only of how soon he could go home. It was clear that, having given one intervention to try to help him eat, they could do nothing further for him and that they needed the bed. No one asked how my mother was going to cope with his care at home. One had a sense that the labels of 'old, cancer and history of psychiatric hospital' were affecting the attitudes of the hospital staff. The GP organised a transfer to the local cottage hospital which was only 10 miles away from home and was less 'high-tec', more 'about basic caring'. The GP visited regularly and was pro-active in contacting the adult children. He had known (and I think, liked) my parents for many years and wanted what was best for them. Whilst we were finding out about our nearest hospice and nursing homes, it was the GP who reminded us: 'That isn't what he wants. He'd be as well staying in the cottage hospital as going to a hospice. He wants to come home.' I realised that the doctor had never discussed alternatives with Dad because he had never wanted anything else except to come home. What we didn't realise at the time was that this particular PHCT was committed to the patient's right to die at home and had policies and services in place to implement domicilliary palliative care; the entire multi-professional team was involved in that commitment, as were any locums appointed.

Dad was now thought to have only a month to live. He wanted to come home and the GP was supporting him in this. He, the doctor, was therefore assessing us, the children, as potential resources to help Dad achieve his wish. Looking back on it, he was very skilled, holding quietly and firmly to his purpose whilst keeping us focused on how we - a partnership between the PHCT and the family - could provide the care Dad would need in order to die at home. I noticed that unlike the hospital, the GP did not identify Mam as the primary carer, though he was careful to include her in all the discussions and planning, checking out what she could and could not do for Dad herself. The problems for us, the adult children, in leaving our own children and work responsibilities to travel to Wales and look after Dad were enormous, but still the GP pushed us to think about how important our decision would be, not just for our parents but for ourselves as we reflected on events later. Eventually we agreed on a plan in which each of the three of us would stay for a week at a time and be the primary carer. I was first on the rota and when my brother brought him home from the cottage hospital, I experienced a sense of panic at the thought of coping with his intimate care needs. The district nurses arrived with him, however, and their 'no-nonsense, down-to-earth' approach, often parodied, was exactly right in helping me overcome this anxiety. Almost before I knew it, I had learned how to empty his urine bag and fit the new one and become proficient at dealing with tubes of one kind or another. Mum had said that she felt perfectly able to care for him for the first couple of days: she, like the rest of us, had had her 'care lessons' and felt confident. As I arrived home the same day, however, the GP telephoned to say that Dad was deteriorating fast and I should return. My two brothers had been contacted and they were also on their way back to our parents' home.

As it turned out, this was the last week of Dad's life and we were all there, one in a nearby B&B, one on the sofa and I slept on the twin bed in Dad's room. I mentioned to the GP that I was afraid that Dad might die whilst I was asleep and he immediately organised for a volunteer sitter to stay in the room so that I could get some sleep. I was amazed that I could actually go to sleep with a complete stranger a few feet away, reading a book, but these volunteers had been so well-prepared for this work: they were unobtrusive, sensitive and tactful and it seemed perfectly natural to have them there. They were only needed for a week but they were prepared to be there indefinitely. We continued to care for Dad during that week, aided 'with a light touch' by the district nurses. We also made sure that Mum got periods of time alone with him so that they could talk. The death when it came was calm and peaceful and all four of us were there. We were all glad that things had been arranged to allow Dad to die at home: it had been profoundly important to him and afterwards, we knew that it had been right for us too.

Interview with Joy, a carer

It was 15 months between the diagnosis of an incurable cancer and Peter's death in hospital. He had been admitted 13 times, five of which were for chemotherapy. It started with very swollen ankles and the GP said at once it could be a symptom of kidney disorder and sent him straight to the hospital out-patients department. He was admitted for tests and at the end of three days, Peter phoned to say that 'the kidney team' had approached him with 'very long faces' and he knew that they were going to tell him something awful'. The specialist had explained the problem in 'tremendous technical detail'; the disease was named as 'multiple myeloma' and Peter said that no one used the term cancer, but he was sure that it was. Shortly after I got to the hospital with one of our daughters, a house doctor came over and said 'I've just come to go over it again in case you didn't understand it.' But then, in the next breath, she said to Peter 'You've got an illness called multiple myeloma which is an incurable cancer.' I thought it was good that she recognised that you can't immediately take in news of a serious illness and had come to go through it again, but that stark, single sentence, I don't know, even looking back on it now, if I would say that was the right thing to do. It was a terrible shock. It would have been wrong to keep us in the dark, of course, but I'm still very unsure about what is the 'best' way to break it to the family. When I returned with my other daughter, the haematologist had already spent an hour with Peter, drawing diagrams to answer his questions and grasping his wrist as he said, 'This illness isn't curable, but it's treatable.' That gave us hope that he would at least have some time. It was suggested that because he had kept himself fit and was relatively young, an intensive course of chemotherapy, though it would make him feel very poorly at the time, could give him three or four years of life. Nearly a year later, Peter reflected back on his decision and wondered how he might have fared without the treatment. He hadn't been feeling particularly ill until the treatment started. You wonder about those things and even now, I feel the need to ask the consultant what difference it would have made. The chemotherapy sessions were the worst part of the whole period - for us watching the effect on him and for him, experiencing it. I don't know how much of my negative feelings were coloured by anxiety about his discomfort but we (the family), reacted badly to what we experienced as phoney kindness. The nurse who was fitting the bag of ingredients for his treatment and who was standing some four or five feet away from Peter said 'Was it an awful shock for you? I suppose it must have been.' It was the very first time he had had this treatment and it was traumatic, especially for our daughter. I'm sure the nurse could feel our hostility but we didn't want pseudo-counselling from her: we wanted to feel that she was a competent, accurate nurse who would put the right things in that concoction. There's no reason to suppose that she wasn't, but this style of talking to us really jarred. Then she said to me, 'Do you want to be called Joy? Most of our patients liked to be called by their first name.' I said, 'No thank you.' I was feeling very angry and thinking: why does he have this terrible illness and need to have these horrible things done to him and all these people can do is be artificially charming. We later came to recognise the capability of this nurse but at that time, she got it wrong for us. It all felt insincere and so different from the straightforward kindness of the staff on his original ward.

Over the whole period, Peter was in five different wards and we really felt the difference in the 'culture' between them. One of the 'best' had a very stable, experienced team of nurses and we had confidence that they knew what they were doing and they always took our worries seriously. The ward we felt least confidence in had several nurses who seemed more interested in joking with the less seriously ill male patients than responding quickly to the needs of the very ill. I know that these are impressions based on just a few weeks at a time but they are important to the whole experience of care for the family. Very few of the wards seemed to have enough nurses to cope adequately with helping very weak patients to eat or wash or clean their teeth. I went every day that Peter was in hospital and often did those kinds of things for him. I could accept that a hospital was under-funded and short-staffed and that from time to time, a professional might say something in a clumsy way; we all do that. But I couldn't bear it when they appeared not to care how much someone was suffering, whether it was by laughing and joking when a patient needed something urgently or by saying what they thought were the right words and not having any idea what patients and families were really feeling.

Peter had five sessions of chemotherapy and reacted badly to three of them, with pneumonia twice and shingles after the fifth, so they didn't give him the sixth one. There was a brief period in the early summer when he was at home and spent long periods in the garden; it was idyllic, really. The GP, who had always come immediately we called and often when he was just passing was always kind and attentive and everyone in that practice was the same. Having people like that in the background, even when Peter was so often in the hospital, gave us confidence. There were only two occasions when I felt at odds with the GP: one was when he tried to talk to me on the way out of the house after a visit and I insisted that we return to Peter's room and discuss it with him. The other was to do with what seemed like his assumption that Peter would go to the local hospice at the end. When he first raised it, I wasn't anywhere near ready to think about that and in any case, I didn't want Peter to go into the hospice; I had visited a friend there and been upset when a nurse had told me that 'they', meaning the staff, thought that it was 'good for patients to see what happens when someone dies', and they appeared not to offer the kind of privacy that I knew I would want for saying good-bye. It was just the one remark but that together with what struck me as choreographed kindness from the moment one entered the foyer, really made me prefer that Peter should die either at home or in the ward where I knew they genuinely cared about him. Looking back, I don't know how I would have coped with him dying at home but in any case it didn't seem to be something which the primary health care team was geared up to. They made sure that we had the district nurses, who were excellent and got us any equipment that would ease Peter's discomfort but everyone seemed to assume that he would die in the hospice. I don't know if Peter refused it because he knew I didn't want it. When I look back on it now, I think that the GP was trying to face me with something I wasn't yet ready to consider. He obviously thought that the end could come sooner rather than later and he saw the hospice as the best place, so he pushed the idea. As time passed, with more hospital admissions, both the consultants were giving us an hour a week to answer questions and explain their thinking about how to keep him going. He was first admitted to a ward where we had never been before but which was very humane and civilised and we had some wonderful quiet moments together, although he was so ill. After a few days however, he was abruptly moved, to my horror, to a ward where I felt that no one had any respect for the patients. Peter was treated very casually as if he were a healthy man in for a minor operation, rather than a very ill man needing a small operation as part of his treatment.

Three things saved my sanity on this ward: the wonderfully warmhearted 'tea lady', the nice 'newspaper lady' and a visit from the University chaplain who sat with us quietly and then prayed over Peter silently for what seemed like a long time.

To our relief, Peter was then transferred to the [kidney] ward where we knew that they were kind and efficient, and as it turned out, that's where he died. He was in a corner by a window and somehow, we managed to make a private space for ourselves.

On what turned out to be the day he died, I said to a nurse I knew quite well, 'If he's going to die tonight, I will stay.' She comforted me and said, 'Although we know he's very ill, he's not ready to go yet.' I left at 10 p.m. and at 12.15 a.m. was awakened by the phone: it was a senior nurse I knew quite well and she told me that Peter had died. I was alone in the house and started shaking violently. I was very hurt and angry and kept repeating that I'd looked after him for 15 months and had wanted to be with him when he died. She listened patiently, asking who she could get to come and be with me; eventually I was able to respond and our new Rector arrived. I phoned the ward and asked the nurse to make sure that Peter was not moved as we were on our way and wanted to sit with him. The nurse said that the bed was curtained off, there was a soft light on next to the bed and there were enough chairs for us. I was really grateful to know that they had been so thoughtful.

When we went in to see him, he looked absolutely magnificent - like a healthy young man. It reminded me of when I first met him and how he must have looked at Cambridge. He looked triumphant. We sat with him for about two hours. At one point, we went to the nurses' office and drank tea; the nurse told us as much as she could. I said, 'We'll go at ten to four' and we did. We were broken-hearted that he had died and I was bitterly hurt that I hadn't been with him, but when we arrived to see him and to say goodbye, they got everything right and I'll always remember that with gratitude. Something else which was a tremendous help to me was that there was counselling available for patients and relatives and this was of inestimable benefit to me in coping with Peter's illness and his death.

Interview with Elaine

I don't think there can really be a 'good' way to learn that you have an illness from which you may not recover but I do think that there are some ways of breaking bad news which should be avoided. After having had X-rays, the radiologist said, 'Everything's fine but I'd like you to come back for another one, to make sure.' What he could have said quite truthfully was 'There may be something there; the hip looks OK but I'd like to have a look at a different area.' When the urologist saw the subsequent X-rays of the kidneys, he just said, 'That's got to come out.' I was being told that I would have to lose a kidney before I'd been told what was wrong with me. I just glazed over switched off. The next day I went to see my GP; I told him what had happened at the hospital. He had a sort of smile on his face and said, in what felt like a very patronising way, that everything was going to be all right. He seemed to be puzzled that I should have gone to see him and he was obviously uncomfortable in the situation. I changed my GP immediately and got a woman doctor who somehow found the time for me to talk. It's so important to be listened to, especially at the point where you've just been given that kind of news, even if you keep saying the same thing over and over again. It's necessary, so that you can begin to believe it. If she didn't know the answer to a question, she would say so and her honesty gave me confidence.

I found, though, that even with so much support from my GP, when I came round from the operation, I realised that I hadn't believed it would really happen and I went into shock because I hadn't accepted it. I remember insisting on looking at the X-rays, as if that would mean anything to me or change anything. The nurses were extraordinarily understanding of these bouts of irrationality. I couldn't fault the standard of nursing: it was just very professionally done with genuine kindness.

Three months later, they found more tumours, this time on the second kidney and on the adrenal gland. I had originally found the consultant very abrupt and rather stand-offish but I came to value him for his determination to get the very best treatment possible for me. There were five malignant tumours on the kidney, though I was told that they weren't 'the worst kind'. They were removed at a specialist hospital and then the kidney was monitored. I had heard that the drug Interferon was being used semi-experimentally at that hospital and my local consultant supported my request to try it. A year after the treatment, there was still no sign of any further tumours.

Looking back, the general manner of my consultant did initially increase my anxiety but once I was established as his patient, I felt that he was really committed to my care; he even called at my home one Sunday morning on his way somewhere, just to see how I was doing. What he did became much more important than his manner of talking to me.

Probably the greatest difficulty I've had, though, is my family s inability to accept that this illness is as serious as it is and once out of hospital, there was only my GP who could listen to my hopes and fears. It was actually a nurse from the hospital who first told me about the hospice day centre (her husband had cancer and had found it really helpful) and I have found it a tremendous support - being with people who accepted the realities of the situation. In fact, the most invaluable thing about the hospice is that you can say anything and people will know what you mean; you don't have to explain yourself or justify yourself. Another thing is that the staff are there to give you anything they can and nothing is too much trouble. It takes a while to understand and accept that but when life goes on at home as if you weren't ill, it really helps to be indulged in that way. The alternative therapies are part of that: they are things which give your body comfort, important when your body is otherwise not much of a source of pleasure! I've had aromatherapy and reflexology regularly and I have my hair done quite often. There are very few 'minuses' about the hospice day care. I was once patronised by a volunteer who said she enjoyed 'helping poor people' like me and I thought 'It's as if she can't understand that it could happen to her as well.' We have organised entertainment from time to time with local people - concerts and so on; it's not to everyone's taste but it's not compulsory to go, either, so you couldn't really call it a 'minus'. I think that being patronised, whether it's a reassuring 'pat on the head' from a doc...