Magazine article Humane Health Care International

Dialogue: On Dying with Cystic Fibrosis

Magazine article Humane Health Care International

Dialogue: On Dying with Cystic Fibrosis

Article excerpt

My initial response to the call for submissions to the final edition of Humane Medicine (Humane Health Care International) was sadness and regret at the loss of such an important publication. Over the years Humane Medicine has brought to light subjects that are not always easy for health-care providers to acknowledge or talk about, such as the patient's subjective experience of their illness and the nature of, and response to, suffering, death and dying, pain, and human dignity. Humane Medicine has pushed at the edges of our comfortable Western scientific mindset and has raised issues that, when faced, can only enhance practice. It is in this same style of enquiry that Humane Medicine is approaching its own death.

After 30 years in health care, first as a nurse, and then as a chaplain, I am acutely aware that health-care providers share society's discomfort with death. Many of us want to avoid any thought or discussion of it, thus depriving ourselves of the opportunity to truly live the final stage of our journey on earth. I am glad to see that Humane Medicine is not depriving itself of the joy or pain that comes with this journey.

It is in this spirit that I offer the following dialogue which describes an alternate model or approach to death. It is a way that seeks to respect and honour the person and their disease process. It seeks to honour the life lived, and the living of it, until death. This conversation took place between myself and Dr. Elizabeth Tullis, Medical Director of the Adult Cystic Fibrosis Program in Toronto. while Dr. Tullis is talking specifically about patients with cystic fibrosis, I believe the principles inherent in her approach are applicable to patients with other chronic illnesses. The key is her willingness to approach and discuss the topic of their death with patients before they are actually dying.

Simmonds: The Cystic Fibrosis Program is the only place where I know that a conversation about dying is initiated with patients when they are still well enough to talk about it and to ask their own questions. At the end of their life, the whole issue of CPR (cardio-pulmonary resuscitation) and the ICU (intensive care unit) is never talked about. Your philosophy in dealing with patients around their death is unique; could you talk about it?

Tullis: My philosophy is based on the premise that I know cystic fibrosis is a chronic illness. I know I am not going to cure them of cystic fibrosis. I know that there will be eventual deterioration and death, usually in respiratory failure. My job is to support life and to maintain quality of life as long as possible. When I recognize that they are dying and there is nothing that I can do that will make a difference, then I must make the process of dying as comfortable as possible on a physical and emotional level. That's why I discuss the process of dying ahead of time--the practical issues, financial issues, emotional issues, the whole gamut.

Simmonds: How did you come to recognize the importance of this step, and how did you learn how to do it?

Tullis: I did a clinical fellowship in Australia, where I spent a great deal of time with patients, sitting at their bedsides and talking to them. A subject frequently raised was, "What happens when you get end-stage cystic fibrosis." Everyone wanted to talk about it and they wanted to know the practical details concerning how they would die; what it would feel like; would they have pain? how long it would take, and how long would you know beforehand? They wanted to know in order to have a measure of control. Then, all the other issues came up about needing letters for people, planning their funeral, and how to tidy up all their financial and emotional affairs. They seemed to find comfort in knowing that they were at the stage where they should think about these issues and would be able to accomplish these tasks before they died.

Simmonds: How do you raise the subject with patients now? …

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