Patient Education and Counseling 97 (2014) 297–298
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Reflective Practice
A time to die? Conversations with Jack§,§§ Phillipa J. Malpas * Department of Psychological Medicine, University of Auckland, Auckland, New Zealand
A R T I C L E I N F O
Article history: Received 2 March 2014 Received in revised form 15 July 2014 Accepted 29 July 2014 Keywords: Motor neurone disease Ethics Refusing food Advance directive Death Assisted death
I first heard from Jack in July 2009. He wrote to me after reading a letter of mine that was published in a local newspaper in which I had discussed some of the ethical challenges arising in the case of a woman who had a severe stroke 20 years previously and had stopped eating and drinking – the only legal choice she had to end her life in New Zealand. In the letter I was sympathetic to medical assistance to hasten death in certain situations. Jack wrote that he had been diagnosed with motor neurone disease (MND) some 4 years earlier but now was ‘deteriorating day by day’. His letter was pragmatic and to the point, ‘what I really wish to know are what are my rights? What are the alternatives? Can I draw up a living will? Do I have to go in such an unseemly and demeaning manner?’ And so began our correspondence. At the top of the letter was Joyce’s (Jack’s wife) and so I wrote back. I thanked him for his letter and asked for a few days to think about what he was asking. Not wanting to assume too much or too little I wrote ‘if I understand you correctly, perhaps you are asking
§ For more information on the Reflective Practice section please see: Hatem D, Rider EA. Sharing stories: narrative medicine in an evidence-based world. Patient Education and Counseling 2004;54:251–253. §§ The author has confirmed that the patient’s wife and son have read the manuscript and given their permission for it to be published in Patient Education and Counseling. * Correspondence to: Department of Psychological Medicine, Faculty of Medical and Health Sciences, University of Auckland, Private Bag 92019, Auckland, New Zealand. Tel.: +64 9 923 3775; fax: +64 9 373 7013. E-mail address: [email protected]
http://dx.doi.org/10.1016/j.pec.2014.07.029 0738-3991/ß 2014 Elsevier Ireland Ltd. All rights reserved.
‘‘if I don’t agree with what is proposed from a medical point of view, what are my alternatives?’’’. Yes, Jack responded several days later, ‘the scenario recorded by you in paragraph 3 of your email covers accurately my areas of concern’. I wrote back to Jack outlining his rights as a health care consumer, pointing out that he had the right to refuse any medical treatment that he didn’t want. I also sent him further information about MND, local hospice material, and publically available information about NZ organisations that support medical assistance to die. Over the course of the next two years, Jack would occasionally ring me at work and talk about how things were going for him. He called when he had to go into respite care for a period and then, a month later, when he had moved into 24 h residential care permanently. All the while he remained steadfast that when the disease had progressed to the point where his quality of life was unbearable for him, he would wish for ‘a swift end’. I often wondered about when that point would come for Jack and what might be the turning point. Would it be when he was no longer mobile, when he could no longer turn the pages of his book, when someone else had to help him with toileting, when he had to leave his beloved wife and family home and move into assisted care? It seemed none of these in isolation was the straw that broke the camel’s back, for they all came to pass and Jack continued to live. By now the letters had stopped and phone calls became our means of communicating. In June 2011 Jack called and asked about refusing food and fluids. Would suicide be recorded on his death certificate if he died
298
P.J. Malpas / Patient Education and Counseling 97 (2014) 297–298
from the effects of not eating and drinking? I told him I wasn’t certain but that I would find out for him. I contacted Jack back later to tell him that suicide wouldn’t be recorded on his death certificate if his decision to stop eating and drinking led to his death. In August 2011 Jack called me in tears. He was now in hospital. He had an oedema, spasms in his neck, bladder and stomach, a constant headache, felt nauseous, could not go to the toilet by himself, and felt he had lost all independence. He said he had woken up at 3 am that morning consumed by panic. ‘I’m tough but I’ve had enough’, he said. ‘I’m not a quitter’. It was at times like these that I felt useless, unable to even offer comfort. And so we just spoke for a while. Jack would always have a joke up his sleeve that he would pull out near the end of the conversation. We would laugh together and I would silently marvel that despite his grief and sadness he could still find things to laugh about. Late in November 2011 he rang me early in the morning. He had been thinking about stopping eating and had spoken to the ‘head doctor’ who was supportive of his decision. A family meeting with his sons and wife had been held and the decision had been discussed. Jack felt supported. He’d written an advance directive and had it witnessed and signed. Over the months since, he had revisited the content and signed that it was still valid and represented his wishes. In February 2012, Jack made the decision to stop eating. Several days earlier he had phoned. I knew immediately from the softness of his voice that things had changed. In the back of my mind was a question. I wondered whether it was appropriate to ask, but I asked it anyway. ‘Could I come and visit you Jack? I feel as though I have come to know you and yet I don’t know what you look like’. Jack said yes, and later that day Joyce phoned me at work and we agreed the day and time. And so I met Jack for the first time and we shared almost 2 h together. His wife Joyce stayed with us and we spoke together in his comfortable room while the rain poured down outside. She too had faced a recent cancer diagnosis and treatment regime and her sentiments around dying seemed to mirror Jack’s – ‘when I’ve reached the end and my suffering is unbearable, I want to be able to die on my terms’. On the walls of his room were photos of their sons and their families. People smiling and laughing with children and grandchildren and memories of places visited together on holiday trips away. At one point during my time with Jack and Joyce, a woman came in and asked Jack if he would like something to eat. Apparently they came in at every mealtime and asked the same question, despite the fact that Jack’s decision to refuse food had been communicated to all staff. Jack spoke about many things that day. He expressed anger that his decision to stop eating was the only one legally available to him. There were no medications to refuse and no medical
interventions to withhold or withdraw to hurry things up. And now life with MND disease had become unbearable. It wasn’t the hygiene care he needed from others; it wasn’t the lack of mobility or living in residential care. It wasn’t pain or nausea or discomfort or lack of independence. It was all of these things and more. For Jack it was that his life had come to an end and he was ready to accept death on his terms. And so we said goodbye. Over the next two weeks I thought of Jack often and wondered how things had gone for him and his family. What I didn’t expect was that Jack would call me several weeks later to tell me he was eating again. He spoke about courage, and staff who didn’t support his decision, the time it seemed to take to die, and his surprise that death had not come quicker despite the fact that he was not eating. At times his conversation seemed vague and confused. I think he just needed me to listen, and so I did. He asked me if I wanted to hear a joke: ‘Did you know that the man who invented the crossword puzzle died two weeks ago? No?, well he is now six down and three across’. He asked me what I thought of his decision to start eating again and I told him I felt he wasn’t ready to die just yet. Postscript: Jack died in May 2012 aged 80 years old. Author’s comments: My research focuses on decision-making at the end of life, specifically within the context of physician-assisted dying practices. As a medical ethicist, I am interested in understanding the reasons individuals have for supporting or opposing such practices, and the implications these may have for medical treatment and care at the end of life. When Jack first contacted me, I was drawn by his humour amidst a devastating diagnosis. He was always able to laugh at a joke, and I laughed at many he told me. In those early communications, Jack was keen to get information about what his options were given his prognosis. Gradually as I came to know Jack, the relationship changed from one of asking specific questions, to that of sharing the day to day challenges of living with motor neurone disease: the concerns he had for his wife, the reality of experiencing his deterioration and the significance of that loss, increasing dependence on others, and facing one’s own mortality. My role became one of listening and support when things became tough. We spoke less about assisted dying and more about the day to day challenges that frustrated him. Having the option of an assisted death or ones choice to stop food and fluids respected, was I believe, a way Jack could assert a degree of control over a disease that was slowly acquiring control of his body. His decision to write an advance directive and discuss it with staff perhaps illustrates that desire to remain autonomous. Yet as death approached, that need for control seemed to subside. Or perhaps it was simply that the desire to hasten death eased as Jack accepted its inevitability.
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Reflective Practice
A time to die? Conversations with Jack§,§§ Phillipa J. Malpas * Department of Psychological Medicine, University of Auckland, Auckland, New Zealand
A R T I C L E I N F O
Article history: Received 2 March 2014 Received in revised form 15 July 2014 Accepted 29 July 2014 Keywords: Motor neurone disease Ethics Refusing food Advance directive Death Assisted death
I first heard from Jack in July 2009. He wrote to me after reading a letter of mine that was published in a local newspaper in which I had discussed some of the ethical challenges arising in the case of a woman who had a severe stroke 20 years previously and had stopped eating and drinking – the only legal choice she had to end her life in New Zealand. In the letter I was sympathetic to medical assistance to hasten death in certain situations. Jack wrote that he had been diagnosed with motor neurone disease (MND) some 4 years earlier but now was ‘deteriorating day by day’. His letter was pragmatic and to the point, ‘what I really wish to know are what are my rights? What are the alternatives? Can I draw up a living will? Do I have to go in such an unseemly and demeaning manner?’ And so began our correspondence. At the top of the letter was Joyce’s (Jack’s wife) and so I wrote back. I thanked him for his letter and asked for a few days to think about what he was asking. Not wanting to assume too much or too little I wrote ‘if I understand you correctly, perhaps you are asking
§ For more information on the Reflective Practice section please see: Hatem D, Rider EA. Sharing stories: narrative medicine in an evidence-based world. Patient Education and Counseling 2004;54:251–253. §§ The author has confirmed that the patient’s wife and son have read the manuscript and given their permission for it to be published in Patient Education and Counseling. * Correspondence to: Department of Psychological Medicine, Faculty of Medical and Health Sciences, University of Auckland, Private Bag 92019, Auckland, New Zealand. Tel.: +64 9 923 3775; fax: +64 9 373 7013. E-mail address: [email protected]
http://dx.doi.org/10.1016/j.pec.2014.07.029 0738-3991/ß 2014 Elsevier Ireland Ltd. All rights reserved.
‘‘if I don’t agree with what is proposed from a medical point of view, what are my alternatives?’’’. Yes, Jack responded several days later, ‘the scenario recorded by you in paragraph 3 of your email covers accurately my areas of concern’. I wrote back to Jack outlining his rights as a health care consumer, pointing out that he had the right to refuse any medical treatment that he didn’t want. I also sent him further information about MND, local hospice material, and publically available information about NZ organisations that support medical assistance to die. Over the course of the next two years, Jack would occasionally ring me at work and talk about how things were going for him. He called when he had to go into respite care for a period and then, a month later, when he had moved into 24 h residential care permanently. All the while he remained steadfast that when the disease had progressed to the point where his quality of life was unbearable for him, he would wish for ‘a swift end’. I often wondered about when that point would come for Jack and what might be the turning point. Would it be when he was no longer mobile, when he could no longer turn the pages of his book, when someone else had to help him with toileting, when he had to leave his beloved wife and family home and move into assisted care? It seemed none of these in isolation was the straw that broke the camel’s back, for they all came to pass and Jack continued to live. By now the letters had stopped and phone calls became our means of communicating. In June 2011 Jack called and asked about refusing food and fluids. Would suicide be recorded on his death certificate if he died
298
P.J. Malpas / Patient Education and Counseling 97 (2014) 297–298
from the effects of not eating and drinking? I told him I wasn’t certain but that I would find out for him. I contacted Jack back later to tell him that suicide wouldn’t be recorded on his death certificate if his decision to stop eating and drinking led to his death. In August 2011 Jack called me in tears. He was now in hospital. He had an oedema, spasms in his neck, bladder and stomach, a constant headache, felt nauseous, could not go to the toilet by himself, and felt he had lost all independence. He said he had woken up at 3 am that morning consumed by panic. ‘I’m tough but I’ve had enough’, he said. ‘I’m not a quitter’. It was at times like these that I felt useless, unable to even offer comfort. And so we just spoke for a while. Jack would always have a joke up his sleeve that he would pull out near the end of the conversation. We would laugh together and I would silently marvel that despite his grief and sadness he could still find things to laugh about. Late in November 2011 he rang me early in the morning. He had been thinking about stopping eating and had spoken to the ‘head doctor’ who was supportive of his decision. A family meeting with his sons and wife had been held and the decision had been discussed. Jack felt supported. He’d written an advance directive and had it witnessed and signed. Over the months since, he had revisited the content and signed that it was still valid and represented his wishes. In February 2012, Jack made the decision to stop eating. Several days earlier he had phoned. I knew immediately from the softness of his voice that things had changed. In the back of my mind was a question. I wondered whether it was appropriate to ask, but I asked it anyway. ‘Could I come and visit you Jack? I feel as though I have come to know you and yet I don’t know what you look like’. Jack said yes, and later that day Joyce phoned me at work and we agreed the day and time. And so I met Jack for the first time and we shared almost 2 h together. His wife Joyce stayed with us and we spoke together in his comfortable room while the rain poured down outside. She too had faced a recent cancer diagnosis and treatment regime and her sentiments around dying seemed to mirror Jack’s – ‘when I’ve reached the end and my suffering is unbearable, I want to be able to die on my terms’. On the walls of his room were photos of their sons and their families. People smiling and laughing with children and grandchildren and memories of places visited together on holiday trips away. At one point during my time with Jack and Joyce, a woman came in and asked Jack if he would like something to eat. Apparently they came in at every mealtime and asked the same question, despite the fact that Jack’s decision to refuse food had been communicated to all staff. Jack spoke about many things that day. He expressed anger that his decision to stop eating was the only one legally available to him. There were no medications to refuse and no medical
interventions to withhold or withdraw to hurry things up. And now life with MND disease had become unbearable. It wasn’t the hygiene care he needed from others; it wasn’t the lack of mobility or living in residential care. It wasn’t pain or nausea or discomfort or lack of independence. It was all of these things and more. For Jack it was that his life had come to an end and he was ready to accept death on his terms. And so we said goodbye. Over the next two weeks I thought of Jack often and wondered how things had gone for him and his family. What I didn’t expect was that Jack would call me several weeks later to tell me he was eating again. He spoke about courage, and staff who didn’t support his decision, the time it seemed to take to die, and his surprise that death had not come quicker despite the fact that he was not eating. At times his conversation seemed vague and confused. I think he just needed me to listen, and so I did. He asked me if I wanted to hear a joke: ‘Did you know that the man who invented the crossword puzzle died two weeks ago? No?, well he is now six down and three across’. He asked me what I thought of his decision to start eating again and I told him I felt he wasn’t ready to die just yet. Postscript: Jack died in May 2012 aged 80 years old. Author’s comments: My research focuses on decision-making at the end of life, specifically within the context of physician-assisted dying practices. As a medical ethicist, I am interested in understanding the reasons individuals have for supporting or opposing such practices, and the implications these may have for medical treatment and care at the end of life. When Jack first contacted me, I was drawn by his humour amidst a devastating diagnosis. He was always able to laugh at a joke, and I laughed at many he told me. In those early communications, Jack was keen to get information about what his options were given his prognosis. Gradually as I came to know Jack, the relationship changed from one of asking specific questions, to that of sharing the day to day challenges of living with motor neurone disease: the concerns he had for his wife, the reality of experiencing his deterioration and the significance of that loss, increasing dependence on others, and facing one’s own mortality. My role became one of listening and support when things became tough. We spoke less about assisted dying and more about the day to day challenges that frustrated him. Having the option of an assisted death or ones choice to stop food and fluids respected, was I believe, a way Jack could assert a degree of control over a disease that was slowly acquiring control of his body. His decision to write an advance directive and discuss it with staff perhaps illustrates that desire to remain autonomous. Yet as death approached, that need for control seemed to subside. Or perhaps it was simply that the desire to hasten death eased as Jack accepted its inevitability.
