Introduction
In some ways what induced me to address this issue is an experience that directly stimulated my thoughts on the matter of End-of-life Care. Over the past few years I have been medical program director of the Palliative Care unit at Toronto’s Baycrest Geriatric Health Care System. In that role, I have learned a great deal from the patients, the health care professionals, staff and the family members, all of whom express various perspectives on the very complex issues and challenges that exist when proper and humane care is provided to those whose trajectory of life can be seen as approaching its end.
My Early Professional Exposure to End-of-life Care
Like many physicians, my exposure to end-of-life care was at best modest during my medical training and residency. In my case it was quite eclectic and spanned a number of countries with different medical cultures and health care systems. The core of the training process was within the acute care system, divided into sub-specialty rotations. Although people died during all of the rotations (even though in some specialties it was less common than others) the focus on death was at best “muted” and often couched within a veil of avoidance at best and “failure” at worst.
Because, despite being of American birth, I fortunately did my medical undergraduate and early post-graduate training in Scotland. I was therefore spared the “high technology” approach to American medicine which, when combined with a primarily corporate financial structure, resulted in what seemed to me to be a rather bizarre mixture of the “best” and “worst” of medicine. In 1967 I started my internship in Aberdeen Scotland, after completing my medical school education in Dundee, then part of the University of St. Andrews. No formal “end-of-life” or “palliative care” existed in Scotland at the time. However, it was the year that Cecily Saunders, considered by many to be the modern pioneer of palliative care, inaugurated St. Christopher’s Hospice in South London.
Even without the formal development of what might be called a philosophy and the processes of palliative care, what I learned on the wards of Dundee and Aberdeen in many ways were prototypical practices that embodied many of the characteristics that became part of the “end-of-life” “palliative care” and what is often called an holistic approach to care. As physicians, we almost always remember and draw on special experiences that become imprinted on our psyche and become the basis of future approaches and actions. For me one such experience occurred while on the “respiratory” unit at the Aberdeen City Hospital.
A Case that Greatly Affected my Medical Perspective on Dying
It was during that rotation where the majority of the patients suffered from either “end or late stage” chronic lung disease or had lung cancer and had been hospitalized if appropriate care could not be achieved at home. Because of where the City (as we called the hospital) was situated, it drew its patient population from Aberdeen itself but also from the surrounding rural communities, most of which were involved in agriculture and livestock especially sheep and cattle farms.
One such sheep farmer was a patient at the “City” with late stage lung cancer, receiving medications to control his breathing problems and pain related to metastatic bone disease. I got to know him quite well as the unit’s intern and during the first two weeks of his stay. As his symptoms became worse, he was moved closer to the central nursing station in what was in those days a typical open, so-called Nightingale ward, containing about 25-30 beds.
Nightingale wards contain about 24 to 34 beds usually arranged along the sides of the ward
I had met his wife a few times. One day the sister (head nurse) called me into her office to speak to her and the patient’s wife. A request had been made by his wife to let him go home for the weekend. “He is pining for his dog, a sheep-herding border collie,” she said. He and his dog had been bonded for ten years and patient and the dog clearly missed each other. Her husband told her that he wanted to go home to say “goodbye” to his trusted friend. We told the wife that we would look into the possibility and when the wife left I asked sister, “can we provide him with enough ’Brompton’s’ for the week-end?” (the term used for the commonly administered pain mixture, named after the Royal Brompton Hospital in London, England). I had learned what an effective symptom management medication this was during my few months attending on this unit. The sister indicated with an “aye” that we could. She suggested that the wife bring her husband back on Monday morning so that she would not have to drive after sunset on Sunday. She and her husband were happy to hear the news and on Saturday morning his son and mother arrived and they all left for the farm.
Aberdeen City Hospital, Urquhart Road, built as a fever hospital in 1874, now used for elderly patients.
When his son brought his father back early Monday morning he told me and the nurses that the visit was magical and he was very grateful that we were able to help his father achieve his goal of having his last time with his beloved dog. He said that the medication we sent was fine and was used sparingly. Days later the patient died. A few weeks later the sister called me and said a small parcel had arrived for me—a somewhat unusual occurrence. She handed me a small brown paper bound packet tied with string. Inside were a pair of blue and yellow Argyle hand knitted socks with a note thanking me for ``all I had done. `` I was moved to tears which I shared with the sister. I had those socks in my possession for years, despite moving between countries, and every time I wore them I thought of that man and his need to be reunited with his dog before he died. At the time I did not think of it that way, but it was truly the embodiment of the values of palliative care.
The Wonders of Literature and the Process of Dying
I recently finished a book entitled, ``The End-of-your-Life Book Club`` by Will Schwalbe. I was drawn to the book because the comment I read was “This is the inspiring true story of a son and his mother, who started a ’book club’ that brings them together as her life comes to a close.`` As a lover of books and someone whose professional life includes palliative care, it sounded like a perfect combination. Schwalbe`s book is a fine testimony to his mother but also to the power of books to uplift the human spirit. The strong bond that it created between mother and son is palpable and even in the face of impending death, the magic of the written word provided emotional sustenance. It confirmed for me critical elements in the care and thoughtfulness that must be applied to the elements of developing sensitive palliative care programs. They should be based on a premise that the person with whatever disease they have is alive until they die and the focus should be on their life. That does not mean one ignores the important aspects of clinical care and symptom management but all that should be within the context of maximizing the life forces of the individual with the help of those involved in providing love, affection and devotion---most often families but sometimes no less important, friends- especially life-long friends.
Conclusion
From what I have witnessed in our own palliative care unit, which echoes experiences at other such facilities, the use of creative forces can be powerful and beneficial. All of the creative endeavours, whether literature, music, art, horticulture or theatre, can have a therapeutically beneficial effect on patients, their families and the care providers that can contribute much to the process of self-realization during this last period of life. It is challenge to those that design and implement programs in palliative care units to explore what ways there are to bring this creative spirit to those under their care during this most meaningful period of life. The legacy left for family members who participate in such undertakings can be profound.
References
CBC radio: The Current with Anna Maria Tremonte: The End of Your Life Book Club: Will Schwalbe: Monday, October 15, 2012, http://www.cbc.ca/thecurrent/episode/2012/10/15/the-end-of-your-life-book-club-will-schwalbe/
Brompton Cocktail. Medpedia. http://wiki.medpedia.com/Brompton_Cocktail
Cecily Saunders International: Better Care at the End of Life. http://www.cicelysaundersfoundation.org/about-us/dame-cicely-biography
'We should not dismiss the value of Nightingale wards'. Nursing Times.net: May 28, 2011
http://www.nursingtimes.net/nursing-practice/clinical-zones/management/we-should-not-dismiss-the-value-of-nightingale-wards/5030393.article#
Romanoff BD, Thompson BE. Meaning construction in palliative care: the use of narrative, ritual, and the expressive arts. Hosp Palliat Care. 2006;;23:309-16, http://www.ncbi.nlm.nih.gov/pubmed/17060295
Cheryl L. McLean. Stories in Palliative Care, A Place for Creative Discovery and Self Expression, in: Creative Arts in Interdisciplinary Practice CAIP research Series. HTTP://CREATIVEARTPRACTICE.BLOGSPOT.COM/2010/06/IT-IS-WELL-KNOWN-THAT-CREATIVE-ARTS-CAN.HTML