End-of-Life Care for Seniors A Comprehensive Approach

By Dr Rory Fisher, MB, FRCP (ED) (C), Dr. Margaret Ross, Ph.D., Michael Maclean

Canada's rapidly aging population has sparked a substantial increase in the number of health care and social service professionals involved in seniors' health care.

While many of these professionals are specializing in geriatric and palliative care, the field of end-of-life care - which combines elements of both geriatric and palliative care to address seniors' end-of-life needs - remains relatively neglected, says Dr. Rory Fisher, Director of the University of Toronto's Interdepartmental Division of Geriatrics.

"Lack of information and guidance on end-of-life care is making the task of providing care for seniors who are facing life-threatening conditions, or who are at or near the end of their lives, all the more difficult for health care and social service professionals and for seniors and their families," says Dr. Fisher.

With a view to addressing this information gap, Dr. Fisher teamed up with Dr. Margaret Ross of the University of Ottawa Faculty of Health Sciences, School of Nursing and Dr. Michael MacLean, Dean of Social Work at the University of Regina and Director of the consulting company, Age Wise Inc. to produce an innovative new manual entitled A Guide to End-of-Life Care for Seniors.

The guide, funded by Health Canada, presents national guidelines and best practices for end-of-life care. It also provides information to health care and social service providers, seniors, family caregivers and the general public on issues related to living and dying well, maintaining comfort for seniors and how to care for the family caregiver.

"There's never been a guide to end-of-life care quite like this one," says Dr. MacLean, who served as A Guide to End-of-Life Care for Seniors project director. "There have been some end-of-life care guides for people with HIV and AIDS and there are lots of good palliative care guides for younger people with cancer," he adds, "but this is the first time anyone has come up with a real end-of-life care guide just for seniors."

Two years in the making, the guide is the product of close collaboration among a group of 18 lead expert authors, 40 Canadian and 16 international reviewers and a National Advisory Committee made up of seniors and experts in medicine, nursing, pharmacy, social work and palliative care.

"The amazing degree of cooperation among so many talented participants made the preparation of this guide one of the best professional experiences of my life," says Dr. Margaret Ross. "We've had nothing but positive feedback on the guide," she adds. "In fact, some of my colleagues here at the University of Ottawa are using it as a teaching text in their palliative care program."

Published in April, 2000, 18,000 English-language copies and 5,000 French-language copies of the guide have been distributed to health care and social service professionals across Canada.

In addition to offering professionals end-of-life care information, Dr. Fisher notes that the guide addresses ethical issues surrounding end-of-life care. "Our goal is to respond not just the physical needs of care recipients but their spiritual and cultural needs," emphasizes Dr. Fisher. "This whole-person approach is designed to ensure that we deliver competent, comprehensive and compassionate end-of-life care to Canadian seniors."

To view or print A Guide to End of Life Care for Seniors, visit the Web site of the University of Toronto's Interdepartmental Division of Geriatrics at www.rgp.toronto.on.ca/ iddg/index.htm.

A New Perspective on Living and Dying Well

For Dr. Rory Fisher of the University Toronto, one of the chief contributions of A Guide to End-of-Life Care for Seniors is the new perspective it brings to the management of dying elderly patients.

"In the health care profession we have traditionally not been very good at looking after dying patients," notes Dr. Fisher, Co-Chair of the National Advisory Committee responsible for the development of the guide. "This is because our focus has been confined to disease prevention and cure. When we can't keep people alive, we see it as a failure."

Dr. Fisher says A Guide to End-of-Life Care for Seniors responds to a need for an approach to end-of-life care that recognizes the inevitability of death in later life from a variety of diseases - including those of a chronic and progressive nature, such as Alzheimer's disease. "As our population ages, this approach is becoming increasingly important and should be a priority for everyone in our health system," emphasizes Dr. Fisher.

He explains that end-of-life care brings together advances in both palliative and geriatric care to help health and social service professionals focus on the broader issues of management of dying patients, whether they are in their homes, in long-term care facilities or in acute care hospitals.

"The benefit of this approach is that it focuses on autonomy and self-determination among seniors and their families," notes Dr. Fisher. "Our experience tells us that seniors have a heightened awareness that death is drawing near. At this stage, they are more concerned with quality rather than quantity of life. Physical autonomy and self-determination in decision-making are crucial to their ability to maintain their quality of life right to the end of their days."

Dr. Fisher says the guide, released in the Summer of 2000, has been enthusiastically received by health care professionals across the country. "We've had a tremendous response from professionals who have told us they find it quite valuable in their work." He adds that the guide, which has received a good deal of international attention, is currently being translated into Japanese.

"This guide is just one step toward improved end-of-life care for seniors," concludes Dr. Fisher. "There's still an awful lot to be done, but I think we're off to a very positive start."

Collaboration a Key to Providing Quality End-of-Life Care for Seniors

As someone who has experienced the health care system as both a long-term care patient and professional health care provider, Dr. Margaret Ross says she has learned a number of important lessons about effective service delivery and patient care - lessons which are reflected in A Guide to End-of-Life Care for Seniors.

"One of the most important things we've learned is the necessity of providing seniors and their caregivers with the information they need to make appropriate care decisions," says Dr. Ross, Co-Chair of the National Advisory Committee responsible for the development of A Guide to End-of-Life Care for Seniors.

"While information is crucial to a patient's autonomy and self-determination, we must also be aware that too much information can be overwhelming," adds Dr. Ross. "The key is to provide end-of-life-care information incrementally, at the times when it can be most useful."

From a patient's perspective, another lesson Dr. Ross has learned is the importance of gentleness in providing pain relief and symptom control and in easing patients' fear and anxiety.

"To approach patients with a greater degree of gentleness, health care professionals have to move beyond a 'clinical' perspective and learn to treat patients as people first," she emphasizes. "It's all about balance. We have to create a balance between our modern, technological approach to care and a more personal approach based on interpersonal skills, attitudes and values."

Dr. Ross acknowledges that, given the time and financial constraints faced by health care professionals, achieving this balance is difficult.

"It's not easy, but I know from personal experience that it can be done, even in the most complex care situations," she says. "During my own illness, I had a team of physicians who were caring, kind, gentle and very professional. The were flexible and worked well together, providing a model of care that should be emulated elsewhere."

Dr. Ross says an effective model for quality end-of-life care must involve positive collaboration among many health care and social service professionals, including palliative and geriatric care specialists, doctors, nurses, occupational and physiotherapists, social workers and pastoral care workers.

A final lesson that Dr. Ross is eager to share is the value of spirituality in the overall end-of-life care process. "Pastoral care services are essential to many patients' comfort and well-being and to the continuity of the care they receive," she emphasizes. "I believe we really need more pastoral care workers in our health care institutions."

End-of-Life Care - A Definition

End-of-life care is an active and compassionate approach to care for older people in the last stages of their lives. It offers treatment, comfort and support to those living with progressive or chronic life-threatening conditions. End-of-life care is sensitive to personal, cultural and spiritual beliefs and practices. It also encompasses support for families and friends up to and including the period of bereavement.

End-of-Life Care: Myth and Reality

Myth: Seniors die of old age
Reality: Aging itself does not cause symptoms, let alone death. Seniors die of many different illnesses, such as heart disease, cancer, respiratory diseases and strokes.
Myth: Seniors are completely prepared for death
Reality: A senior's indecision, ambivalence, or denial can prevent proper decision making in preparation for death. Health and social service providers and families can help older people choose the type of care they wish to receive if they become terminally ill.
Myth: There is nothing that can be done for seniors who are dying
Reality: There are many things that can be done. Seniors should be informed about their rights and assisted in making end-of-life decisions before a crisis emerges. Many seniors want the opportunity to decide and/or share decisions with their families or caregivers.

End-of-Life Care - Seniors' Concerns

When it comes to end-of-life care, seniors are more concerned with quality than quantity of life, say the expert authors of A Guide to End-of-Life Care for Seniors. Here is a brief overview of seniors' concerns as they approach the end of life.

Strategies for Ensuring Quality End-of-Life Care

Here are some strategies advocated by A Guide to End-of-life Care for Seniors: