Developing GMC guidance on End of Life Care Consultative Conference Patient perspective Jonathon Hope 1

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1 Jonathon Hope 1 JH: Thank you. Good afternoon ladies and gentlemen, my name is Jonathon Hope and it is a great pleasure to stand before you today and share some perspectives on dying and above all dying well. I have had twenty five years of kidney failure and in that journey I have faced death, seen fellow patients die, observed the difference between a good and a bad death and cared for the dying. Firstly, when you have suffered and observed as much suffering amongst your fellow patients as I have and when you have been kept alive for so long by so many professionals, you cannot fail to respect the incredible courage of the patients and the remarkable dedication and commitment of those who look after them. However, despite what has often been exceptional care, there is always room for improvement and that especially holds true for the care of the dying. So what do I believe are the key elements of care that lead to a good death? First let s not deny death, dying is taboo. In twenty five years, although I

2 Jonathon Hope 2 have narrowly escaped death twice, been hospitalised for years, repeatedly fallen unconscious at home, I have never been approached to discuss an advanced care plan. Why? Because for most of us, discussing death represents the destruction of hope and a failure. As a member of hospital staff said recently, kidney patients are told no, no, no. We can keep you going and she said it s not right, it s denying what is really going to happen. I too believe it s wrong. When death is swept under the carpet it makes it difficult for us to prepare for a good death. Openly discussing and empowering our decisions in the face of death can actually give hope not take it away. Second, break the bad news well. Breaking bad news well is not a science. It is an art form. When it goes badly then as one fellow patient said, it is like walking into a brick wall. However, what does it feel like when it s done well. One young lady in her late teens, who could no longer dialyse, explained the doctor spent

3 Jonathon Hope 3 time with me talking about the difficulties I was having on dialysis with mum and dad present and spent time explaining what coming off the machine would be like. It was not a one off conversation; it was piece by piece, as and when I and my family could take it in; the doctor never hid that there were no longer any options. Gently and slowly he told me how it was. Third, ask what our final wishes are and keep asking. On the whole, getting your wishes heard can be very, very challenging. For me it has been a life long struggle to get my voice heard as a patient. In the consultation room, on the ward, in the operating theatre when I have been so weak, so tired, so desperate and so overwhelmed by pain I have had to fight to get my voice, my wishes heard. So for me it is inspirational that at the heart of this meeting today we re considering new guidelines that if implemented will give all patients and their families a voice in how they want to die. For another young lady, who after

4 Jonathon Hope 4 two failed transplants decided things would not get better and stopped dialysis, this too was also her biggest challenge. Pain relief when I want it, not when four hours have gone and then it is an after thought. I m not the bookie type, there is no point in getting me books or magazines or whatever, I want rock music, I want AC/DC. She explained it is important that people are asked what they want. People should not have to stamp their feet and ask what they want because I am sure that many won t have the strength to do that. I can lose myself in my rock music, it takes me away from where I am going and no one thinks of that. Fourth, provide appropriate information when needed. Information empowers and if chosen carefully, it can uplift and reduce fear and uncertainty even in the face of death and vitally it can help us prepare. There are the actual facts around diagnosis provided by clinicians but it is the patient stories that don t just give us the facts, they give us hope. Some ask

5 Jonathon Hope 5 whether it s possible or ethical to obtain feedback from the dying. In five years of intensive working with patients and carers to get their voice heard, I have never once doubted the courage or preparedness of many to share the most intimate stories, no matter how distressing, to help others who follow in their footprints. So let s share more patient journals or family stories of dying and dying well. A so called end of life experiences, of pre death phenomena, which comfort or prepare the dying person for death. Why? From personal experience I can tell you that a near death experience can be unimaginably uplifting and can totally remove any fear of death. Fifth, shared decision making. Losing cognition is perhaps the thing that we most fear about getting old, yet early diagnosis and the use of advanced care plans or directives can be a remarkable tool that help ensure that even if we lose our cognition our choices will be respected. Recently, a dying friend concerned about the burden

6 Jonathon Hope 6 his family would face if he lost cognition, asked me for support in drawing up an advanced directive even though he could only communicate with a nod or a shake of the head. Its organisation was simple and straight forward. A lawyer, myself and a clinician were present, as he explained that once his cognition was lost, he wanted no artificial nutrition; nor did he want any life sustaining treatment. As the implications of this sunk in we felt deeply that he alone knew what was right for him in this situation and despite being physically, emotionally and mentally exhausted from the effort, it seemed like a huge weight have been lifted from his shoulders. For the first time in weeks he seemed at peace. Sixth, offer emotional support. Many of us today feel unsupported or untrained or ill prepared for the role of caring for the dying. However, the following quote from a late teen patient who died once her treatment options had ran out illustrates well that what, sorry, that we do not need to be an

7 Jonathon Hope 7 expert to make a difference to the way that people die. The doctor shows that he cares. I think of him as my friend not as my doctor, he levels with me but not in a harsh way, he tells me the truth and all along I have felt I can trust him. This is no longer about a man in a white coat, this man is like a little angel guiding me through, telling me what it s going to be like, asking me what I feel, not only what I feel physically but what am I thinking, what is concerning me, she went on to say. It is like he has held my hand over the last month or so. It s important because the people who love you, they want to hold on to you for as long as possible. But he has been able to help me along my path rather than hinder me with love. He does it in a way that is not dispassionate. He does it in a way that is human, not in a clinical way. Seven, be open to touch. Despite the medicalisation of dying, touch can be an incredibly powerful way of showing empathy for someone about to die. Although for much of my life I have not

8 Jonathon Hope 8 wanted touch when I came round from a coma, unable to speak, unable to move, unable to eat, I desperately wanted to be touched or talked to. I felt so lonely, so very lonely and also incredibly vulnerable. Yet for days as I hovered in and out of consciousness, I felt like a bystander as staff came to attend the life support machines around me. In the words of another young lady in the final hours of her life - there is a nurse, an auxiliary, she holds my hand, she is married because I can see the rings on her fingers. That is important. Initially I had chosen for no one to be around but someone was around, she was around. She sits on the side of my bed and holds her hand out with two rings, she goes on, she tells me it is going to be all right. She isn t talking about it s going to be all right because I am going to live. She is talking about it s going to be all right to die and to let go. But she does not say it but I know. Eight, offer spiritual support to the dying and the bereaved.

9 Jonathon Hope 9 What is spiritual care and is it important? For me it s mostly about finding meaning in life and yes, sometimes that means finding meaning in the face of suffering. Is that possible? There are many of you present today who work in the area of spiritual care, know it is. For many of us it seems inconceivable but I know it is possible because it happened to me. I have come to realise that my experience of inconceivable suffering, endless days and nights of hospitalisation, dialysis and transplantation are in fact a gift, a gift to help others. We must also not forget the bereaved for meaning can also come to the bereaved. For example I have had four transplants, four. I am standing here today because four families amidst their profound anguish and suffering took the decision to donate loved one s organs. When a mother who has lost her son receives a letter from a donor recipient telling her how that transplant has changed a life, how it has given back

10 Jonathon Hope 10 freedom; that too can bring meaning. Lastly, discontinuing life prolonging treatment is sometimes needed. Nowadays more than twenty percent of dialysis patients choose to discontinue dialysis and let nature take her course. Is that right or wrong? A friend of mine went down that route. Why? She was tired, she had decided she had had enough, she had fought for so long, so hard against unrelenting pain and discomfort, the near total disempowerment that hospital dialysis brings. For twenty five years she had fought the unmanaged, unrecognised and rarely treated symptoms that daily threaten to destroy her quality of life. The doctors and nurses respected her decision to stop dialysis and made space for her to spend the last days of her life in the side room on the unit amongst the patients and staff she knew so well. She knew what to expect physically, emotionally and spiritually leading up to her final minutes. Her comfort and pain were managed well, her family and friends

11 Jonathon Hope 11 visited often. I saw her two hours before she died; she was comfortable, lucid and so much stronger than I was. She felt that her wishes had been respected, she had given life her best shot and she was at peace. So in conclusion what is dying well? Just as each of us live our lives as individuals in a way which seems right for us, dying well is simply dying in a way that seems right to us and in the end that means our individual wishes being respected. If we wish to die in the side room of a hospital, our family gathered around praying, excerpts from a sacred text being read with a minister by our side, as we recite our testimony of faith, so be it. If we wish to spend our final hours at home surrounded by our favourite books with gentle music in the background and perhaps our partner by our side, so be it. A good death has many aspects. It is about not denying death, it s about breaking bad news well. It s about asking one s final wishes, the provision of appropriate information, shared decision

12 Jonathon Hope 12 END. making, emotional support and touch and yes, where appropriate, discontinuing life prolonging treatment. But ultimately, a good death is simply about respect. Having the courage to trust the patients and their families to know what is right for them in their final hours.

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