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End of Life Dignity Care
Ernest H. Rosenbaum, MD
For patients who have gone through diagnosis and therapy and who are failing, hope often shifts from cure or remission to thoughts of end-of-life care, spending time with family and friends, and trying to hope for and accept a good death.
There has been a report from the Institute of Medicine 1 on what they describe as a good death, "Free from avoidable distress and suffering for patients, families and caregivers."
It is important to control distress and suffering symptoms, such as pain and psychological distress, with both medical and spiritual support, and maintaining goals as limited as possible for purposes of sense of well-being and meaning of life as patients transition toward end-of-life. Thus, physical symptoms need to be controlled as well as possible with optimal supportive care.
Chochinov has proposed dignity therapy with promising expectations. 2,3
When one loses dignity, one also may lose quality of life and have symptoms, such as anxiety, distress, and decreased psychological and physical functioning. In a Holland Study, 4 patients often chose euthanasia or assisted suicide when they lost their dignity.
Chochinov feels that at the end of life, people often are more susceptible to loss of dignity, as they are losing many of the factors that have maintained their personhood. Medical care should promote dignity, as well as control of symptomatology, especially to prevent suffering at the end of life.
End-of-life care requires special medical attention, as therapy and supportive care, although having played a vital role, are no longer the goal, and a different type of supportive care is now required to assure as good a death as possible. The type of health care provided through physicians, nurses, and the home-care team/hospital team makes a major difference in quality of life during end-of-life care.
Preventing suffering is the major goal, which can be achieved in the majority of cases through good pain control and supportive care. The first thing is to do an analysis of the current problem and prescribe solutions. The solutions are modified depending on success. Providing physical and psychological supportive care, including spiritual and existential care, are emphasized. Chochinov describes general activity as "General activity refers to the notion of something transcending the event of our death that will continue to resonate with importance or meaning in the world we leave behind, or for the people we leave behind." This is promoted by dignity therapy.
Dignity therapy "invites people in recorded conversations to talk about things they would most want known or remembered, or things that really speak to the essence of who they were. 5 These conversations, along with edited transcriptions that are bequeathed to loved ones, are meant to reaffirm their sense of personhood."
Dr. Chochinov feels that "despite your illness, symptoms, challenges and losses, that the essential component that defines you is still there. It's there and evidenced by the fact that you can speak about it."
Dignity therapy includes messages for family and life history for family members. The interview centers upon the interests and the messages for families and is very flexible. In his study from Australia n Canada, he reported that 91% of patients reported being satisfied or very satisfied with the experience and that 76% felt that it heightened their dignity.
Chochinov has noted that there is great vulnerability near the end of life, and great care must be taken to capture accurately the feelings and essence of that person. Sometimes, there are cognitive problems or recall problems; thus, accuracy may be somewhat limited, and caution is recommended as the interview continues.
1. Field, M. J., Cassel, C. K., eds. "Approaching Death: Improving Care at the End of Life." Washington, D. C.: National Academy Press; 1997
2. Chochinov, H. M., "Dying, Dignity, and New Horizons in Palliative End-of-Life Care," CAA Cancer Journal for Clinicians, 2006; 56: 84-103
3. Chochinov, H. M., "Dignity Conserving Care - A New Model for Palliative Care. Helping the Patient Feel Valued." JAMA, 2002; 287: 2253-2260
4. Onwuteaka-Philipsen, BD., van der Heide, A., Koper, D et al, "Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995 and 2001", The Lancet 2003; 362: 395-399
5. Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., McClement,S., Harlos, M. "Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life" Journal of Clinical Oncology, Vol 23, No 24 August 20, 2005: pp. 5520-5525
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