Living - to the End

I’ve learned first-hand how it feels to receive a terminal diagnosis–twice. In neither case did it involve my own life, but rather the life of a close relative. In both cases, hospice palliative care played a significant role in their last days and beyond.

End-of-life issues are the subject of much debate worldwide as societies look into the immediate future of health care planning for the baby boomer demographic. Demands on already stretched medical systems will increase over the next few decades as more services are required to deal with chronic, age-related illnesses.

Death is Natural

Historically, death has been viewed–and treated–as a natural process of living. But more recent medical advances have provided the means to resuscitate and prolong life through advanced life-support systems. The goal of medicine is now to cure, or to sustain life, at all costs. Death and dying are seen as failures to cure.

As Elisabeth K Ross, author of the groundbreaking book On Death and Dying (first published in 1969), said, “We live in a very particular death-denying society. We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality.”

This attitude leads many to feel they have few choices when confronted by a terminal illness. These people may fear pain and suffering as well as becominga financial and emotional burden ontheir families.

How, then, does society respond to people whose illnesses are no longer amenable to the heroics of modern medicine? How do we provide for a dignified end of life?

While some advocate allowing selected forms of assisted suicide to address the issue of a dignified end, others see the services provided by the hospice palliative care movement as a better alternative: effective pain and symptom management for the patient, and emotional and social support for both the patient and family.

Hospice History

Although caring for terminally ill family members has been a tradition that goes back to antiquity, the birth of the modern hospice palliative care movement has a more recent beginning.

Modern medical practices over the last century, based on a singular goal–to cure–meant that terminally ill patients were languishing until death in hospital settings that were ill-equipped to meet their unique physical, emotional, and spiritual needs.

A British pioneer in caring for the dying, Dame Cicely Saunders responded to this need for compassionate care for the terminally ill by establishing the world’s first purpose-built hospice in 1967 and, in doing so, founded the modern hospice movement.

St. Christopher’s Hospice in London, England, was founded on the principle of combining expert pain and symptom relief with holistic care to meet the physical, social, psychological, and spiritual needs of its patients and those of their family and friends.

British Prime Minister Gordon Brown listed Dame Saunders as one of the eight great modern historical figures (among the seven others: Nelson Mandela and Martin Luther King) in his recent book, Courage: Eight Portraits (Bloomsbury Publishing, 2007).

Brown says of Dame Saunders, “She fought entrenched professional ignorance and indifference to the needs of the dying.” He chose her because, through hospice and palliative care, Cicely Saunders “succeeded in changing attitudes, generating important new knowledge, and transforming the care of the dying… across the world.

“In changing our view of death, she has changed our view of life itself.”

Hospice Resources

There are hospice organizations in communities, large and small, across Canada that are dedicated to bringing dignity and comfort to those who are coping with the challenges of terminal illness and approaching death.

The Canadian Hospice Palliative Care Association is the national voice for hospice palliative care. Their website (chpca.net) provides an online directory of hospice palliative care services across Canada, each with a listing of programs and services, contact information, the population served, and where they provide care.

Vancouver’s Canuck Place Children’s Hospice

Opened in 1995, Canuck Place is the first freestanding hospice for children in North America. Funded through donations from individuals, corporations, and various organizations including the National Hockey League’s Vancouver Canucks, the hospice provides a comprehensive list of specialized care for children and their families when a child has a life-threatening illness.

Some of the Services Offered Through Canuck Place:

• respite care provides 24-hour care of children at the hospice, on a temporary basis, to allow their families time for rest and renewal
• management of adverse physical and emotional symptoms ofthe child’s illness and/or side effects of treatments
• end-of-life care for both child and family
• grief support and bereavement care from the time of a child’s diagnosis, throughout their illness, and after their death

Other Children’s Hospices In Canada:

• Roger’s House, Ottawa (rogershouse.ca)
• Hospice Calgary (hospicecalgary.com)
• Darling Home for Kids, Toronto (darlinghomeforkids.ca)
• The Lighthouse/Le Phare, Montreal (phare-lighthouse.com/en/default.aspx)

End of Life Terminology

Palliative care is designed to provide comfort and dignity for individuals and families who are living with a life-threatening illness, usually at an advanced stage. Palliative care is carefully planned to meet not only physical needs (for example, relief of pain and other symptoms) but also the psychological, social, cultural, emotional, and spiritual needs of each person and family.

Hospice is often used to refer to services provided by agencies in the community. Hospice agencies coordinate teams of health care practitioners and volunteers to support patients in their homes, in long-term care facilities, in hospitals, or in special hospice centres.

Hospice palliative care is now how most health care practitioners and community agencies refer to the broad spectrum of care for terminally ill patients and their families and friends.