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Rapid Responses: Rapid Responses published:
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A good death - a plea to include patients and families
- Amanda J McGough (12 March 2007)
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Researching the “good death” in Cuba
- Alfredo A. Espinosa-Roca, Eduardo Fernández-Casteleiro, Marianela Fonseca-Fernández, Alfredo D Espinosa-Brito (13 March 2007)
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“Put cards on the table!”
- Lionel H Pazart, Régis Aubry, Jacques Massol (17 March 2007)
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A Good Death
- Sharon J Williams, Marilyn Kendall, Fiona Harris, Kirsty Boyd, Aziz Sheikh, Scott A Murray, Duncan Brown, Ian Mallinson, Nora Kearney, and Allison Worth (17 March 2007)
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Re: “Put cards on the table!”
- Barbara E Wall (30 March 2007)
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Respect for autonomy is key to recruiting the vulnerable in research
- Heather L. Elphick (17 April 2007)
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Amanda J McGough, Nurse North Yorkshire
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At last - a recognition that people do die and that they still need care and involvement.This research is welcomed as it raises what is often a difficult and distressing subject (for patients and families, not just clinical staff). From personal experience, some patients and families would be happy to participate in end of life research; it's just that many staff are too reluctant to raise the issue. End of message plea - patients don't always die of cancer. In memory of Nancy Rowden. Competing interests: None declared |
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Alfredo A. Espinosa-Roca, MD, palliative care programme Municipal Health Division of Cienfuegos, Ave 56 No 2917 altos, Cienfuegos 55100, Cuba, Eduardo Fernández-Casteleiro, Marianela Fonseca-Fernández, Alfredo D Espinosa-Brito
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Dear Editor: We agree with Kendall et al (1) that there are many challenges and ways forward in researching the "good death", and we welcome their very interesting article. For the last years of the past decade our group have implemented a comprehensive programme of palliative care in primary care in Cienfuegos, Cuba, as we reported previously. (2) We conducted some qualitative studies to support and to evaluate this programme, with several tasks involving in-depth interviews with researchers, health professionals, and focus groups with patients and relatives. In our investigations we found several barriers described by Kendall and commented by Workman. (3) For example, in the Cienfuegos programme not only people affected by cancer were included, so we faced difficulties for the definition of “end of life”, because it is not uncommon that some of those patients without cancer could still need “curative actions” in specific situations. On the other hand, as has been shown in other studies related to the use of health services, it is very improbable to exclude patients socially in selecting our patients for research, in a National Health System which is public and free as in Cuba, and because the equitable organization of our society. (4) But, as Kendall emphasised, a bias in the recruitment of patients for interviews due to other causes, is almost impossible to avoid in this type of research, because of the status of the patients, ethical or practical issues,(5) including that many of them usually don’t know their own diagnoses in our context, according to cultural traditions among Cubans. However, to do nothing is also an attitude (nihilistic), and as both articles of the recent issue of the BMJ remarked, we also think that it is better than nothing to have results about death and dying acts and end of life research in our hands for further decisions, knowing the different barriers that exist in this field and the limitations of each specific study. Alfredo A Espinosa-Roca, MD, palliative care programme, Municipal Health Division of Cienfuegos, Ave 56 No 2917 altos, Cienfuegos 55100, Cuba, espinosa@perla.inf.cu, Eduardo Fernández-Casteleiro, MD, palliative care programme, Marianela Fonseca-Fernández, MSc, psychologist, palliative care programme, Alfredo D Espinosa-Brito, MD, PhD, professor, Teaching Hospital "Dr Gustavo Aldereguia Lima," Cienfuegos, Ave 5 de Septiembre and Calle 51A, Cienfuegos 55100 References. 1. Kendall M, Harris F, Boyd K, Sheikh A, Murray SA, Brown D, et al. Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study. BMJ 2007 doi: 10.1136/bmj.39097.582639.55. 2. Espinosa-Roca AA, Espinosa-Brito AD, Fernández-Casteleiro E, Sabatés- Llerandi T. Where patients with cancer die in Cuba. BMJ 2006;332:668. 3. Workman S. Researching a good death. Editorial. BMJ 2007;334:485-6. 4. Ordunez PO, Bernal JL, Espinosa-Brito AD, Silva LC, Cooper RS. Ethnicity, education and blood pressure in Cuba. Am J Epidemiol 2005; 162: 49-56. 5. Fonseca-Ferández M. Regulatory subsystems of personality in terminal ill patients. Thesis for Master of Science degree, Cienfuegos, 2003. Competing interests: None declared |
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Lionel H Pazart, Hospital Practitioner University Hospital of Besancon, France, Régis Aubry, Jacques Massol
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Kendall & al. present the difficulties of the research in people nearing end of life. They analyse methodological issues of this type of research, and particularly on people who cannot give their consent. In order to illustrate the development of innovative research methods, we would like to present an ongoing clinical study, designed to assess the criteria of treatment decision making for Alzheimer people at the end of life and presenting an acute life threating complication. The study is an observational study among one hundred health centers (university hospital, general hospital, local hospital, home for elderly) in the east of France, based on the use of the method of “card sorting”. “Card Sorting” is a technique particularly used today for defining web site structures (for example the intranet of the ministry for the justice of Quebec)(1). We have adapted this technique for exploring how care givers select and order criteria of treatment decision making (initiation or not, continuation or not), so that we can measure the frequency and the relative importance of each criteria. Names of criteria to be categorized are printed on individual cards. The list of card labelling (n=34) was established on the basis of a litterature review, a brain storming from a palliative care team, and an open-labeled questionnaire administered to three geriatrics team. We added two “joker” cards for unforseen criteria For each patient included in the study, all participants concerned by the patient (medical practitioner, nurses, other health professionnals, but also sometimes the family, the cook, the cleaning lady…) received a card deck, then they are asked to group criteria by order of importance in the decision making about the treatment. Cards are large enough to accommodate the names in a font that participants can read easily when spread out anonymously on a desk or table. A clinical research assistant took a picture in order to record all the results and to relate them further with the function of each participant. The results of the study are expected by the end of this year. Till now, the method is very well accepted by participants. The use of a multidisciplinary “group” format also has considerable benefits. Often, the participants discuss together for the first time about the patient’s situation and bring to the session quite different opinions. Through the discussion on the different criteria put on the table, it becomes possible to change the decision. “Card sorting” sessions are an important opportunity to involve the actual care givers in the decision process. This makes them feel confident to express their point of view, and emphasises that the decision will be shared by all people concerned by . The study was founded by the National Clinical Research Program (PHRC) (1) Gaffney, Gerry. “What is Card Sorting?” Information & Design (2000) Competing interests: None declared |
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Sharon J Williams, condo activist, life learner, artist L4Y 3T6, Marilyn Kendall, Fiona Harris, Kirsty Boyd, Aziz Sheikh, Scott A Murray, Duncan Brown, Ian Mallinson, Nora Kearney, and Allison Worth
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A good death means dying with dignity and as much comfort as possible. Thanks to his excellent doctors and a very tightly written Living Will with full knowledge of the implications of his decisions, my father had a good death. His Living Will was done according to the method laid out by the Ethics Committee of the University of British Columbia, Canada. My father was suffering from terminal congestive heart failure. As a nurse, I have seen many patients with the same condition suffer very bad deaths, drowning in their own fluids while family members were forced to stand by helplessly watching this needless suffering. As nurses, we frequently had to get the doctors to sedate the relatives because their distress over the suffering of their loved one was so severe. My father wanted to die at home, but I knew there was no way to give him the good death he wanted outside of a hospital. We cared for him at home until he was begging to die. He was suffering continuously. I notified his cardiologist who managed to get him a bed in the palliative care unit at the hospital. He only lived for another 30 hourse in the hospital. When we went to see him on the day after admission, it was clear that he had no further will to live, refusing food and fluids and again begging to be let go. On checking the orders on his chart, I found his doctor had correctly prescribed a sufficient dose of morphine and didn't leave until I was certain the nurses understood it was to be given without my father having to beg. Even at this point, my mother was so distressed, I had to take her home. About 9 hours later, we were awakened by a nurse reporting that his breathing had changed and we should come right away. 15 minutes later, another call came saying he had passed away peacefully. The aftermath of a good death is that the family still grieves, but is less distressed. When they look back on their loved one's last hours, they can do so in peace, knowing that the death was painless, a release from further suffering. There is a place for ethics committees and reviews, but not at the expense of needless prolongation of suffering of the patient who knows there is nothing left for them in life and there is no cure or adequate treatment for their condition. There is a vast difference between how we treat our pets who are in extremis as opposed to how we treat people who are dying. It is time to take a close look at what can be done when a terminally ill patient requests closure to their lives. There is nothing to be gained for the patient or family by prolonging the patient's suffering. We have palliative care for terminally ill cancer and AIDS patients. Under Canada's Charter of Rights, a case could be made that failing to assist a terminal patient in their request to be allowed to die comfortably violates their constitutional right to be protected against cruel or unusual treatment. In my father's case, failure to give him sufficient morphine to allow him to pass peacefully during sleep would have been an example of cruel treatment. When our family looks back on Dad's death, we are satisfied that he was allowed to die in his sleep, assisted by morphine. We see no breach of ethics or morality in acting in the patient's best interests when they are dying. Even though my mother is approaching 90 years of age, she is asking for the same kind of tightly worded Living Will as my father had. She, too, wants a good death when the time comes. As a side-note, my father's sister, a 7 year survivor of ovarian cancer, also had a good death in a hospice. She planned this herself to minimize the distress of her death on her family. Sharon J Williams RN Competing interests: None declared |
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Barbara E Wall, speech therapist Handens hospital, Haninge, Sweden
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Thank you for bringing up the Card sorting technique. Would it be possible for you to provide an example, since it was not entirely clear what information a card would provide or what role the picture (was it of the patient?) played with respect to the cards? This approach sounds as though it would be helpful in many other care situations where a number of people need and give information and opinions. Competing interests: None |
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Heather L. Elphick, Specialist registrar geriatrics and general medicine Royal Hallamshire Hospital, Sheffield,S10 2JF
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Editor, I read with interest Kendall et al’s paper on the challenges and ways forward in researching the “good death” and their paper contained some interesting insights into the experiences of researchers.1 Unfortunately the information from research subjects themselves was extremely limited, with only seven patients involved in the study. These patients were highly selected, comprising four patients recruited by hospice staff and three patients noted as being ‘specifically interested in research’ recruited from a cancer network database. Given these credentials it is hardly surprising that the user focus groups confirmed the researchers’ views that many people with advanced illness still want to participate in research. Whether research involving the vulnerable is ethical, particularly when there is no prospect of benefit to the research subjects themselves is a vexing question for research ethics committees. Adequate scrutiny of research proposals by ethics committees is fundamental, especially so when vulnerable people are involved. Consideration is made of the research question, the scientific quality of the proposal, the impact on the research subject and the wider implications of the research. Ethics committees may be concerned about possible harms to the vulnerable, especially where potential benefits appear negligible. However, providing the process of consent is robust, valid consent reflects autonomy. Overzealous gatekeeping by ethics committees represents unjustified paternalism towards individuals who, although vulnerable, maintain a right to respect for autonomy. Crucially, members of vulnerable groups are individuals, and where there is capacity to make decisions about involvement in research such individuals should be given the opportunity to do so. Whether many or few participate is, to some extent, irrelevant. Heather Elphick, specialist registrar geriatrics and general medicine,
Royal Hallamshire Hospital, Sheffield S10 2JF.
1 Kendall M, Harris F, Boyd K, Sheikh A, Murray SA, Brown D, Mallinson I, Kearney N, Worth A. Key challenges and ways forward in researching the “good death”: qualitative in-depth interview and focus group study. BMJ 2007; 334:521-4. Competing interests: None declared |
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