Palliative Care Questions and
Answers
This section attempts to address a few general
questions on Palliative care and should be thought of as a starting point in
looking for help. It should in now way substitute for frank an open discussion
with your health care professional team.
The idea of Palliative Care
may be new to many people. The aim of traditional medical practice has been to
cure illness. However, in the last twenty years or so, the concepts of pain and
symptom management, and psycho-social support for persons living with a
terminal illness, as well as for their families and caregivers, have become
more prominent.
The goal of Palliative Care
is the achievement of the best quality of life for patients and their families.
A "family" is whoever the person
says his or her family is. It may include relatives, partners and friends.
Led initially by the
hospice movement in England, and largely due to the work of Dame Cicely
Saunders at St. Christopher's Hospice, palliative care or hospice care has
become a worldwide phenomenon. In Canada, a number of centres have developed
excellent palliative care programs which have been recognised around the world.
An important objective of
palliative care is relief of pain and other symptoms. Palliative care is
planned to meet not only physical needs but also the psychological, social,
cultural, emotional and spiritual needs of each person and family.
Palliative care may be the
main focus of care when a cure for the illness is no longer possible.
Palliative care services help people who are ill to live out their remaining
time in comfort and dignity.
Palliative care services
are helpful not only when a person is approaching death, but also at earlier
stages in the illness. Palliative care may be combined with treatments aimed at
reducing or curing the illness, such as chemotherapy.
Families also benefit from
support when their loved one is dying and after his or her death.
Palliative care is planned
and delivered through the collaborative efforts of an interdisciplinary team
including the individual, family, caregivers and service providers. It should
be available to the individual and his/her family at any time during the
illness trajectory and bereavement. Where possible, palliative care should be
available in the setting of personal choice: home, hospice or hospital.
While many service
providers may be able to deliver some of the therapies that provide comfort and
support, the services of a specialised palliative care program may be required
as the degree of distress, discomfort and dysfunction increases.
Is there a difference
between palliative care and hospice care?
In Canada, we tend to use
both terms to refer to the same thing this specific approach to care. However
some people use hospice care to
describe care that is offered in the community rather than in hospitals.
Caregiver Support
Family members may be
concerned about whether they will be able to look after their ill family
member, especially when the person is being cared for at home.
Palliative care services
that help the family cope include:
- advice and assistance from
health care providers such as nurses and doctors who are skilled in
providing palliative care.
- instruction on how to care for
the person. For example, how to give medication, how to prevent skin
problems, how to recognise when the person is close to death and what to
do at that time.
- home support services that provide
assistance with household tasks such as meal preparation, shopping and
transportation.
- relief of the caregiver.
Sometimes a volunteer stays with the person so the family caregiver can go
out. In other situations, the person who is ill may go to a day program or
enter a hospital or long-term care facility for a short period of time.
In the Montreal area, most hospitals have at least some elements of a
palliative care service. Community clinics (CLSCs)
are currently, being organised to provide palliative care at home.
For more information, speak with your physician.
The World Health
Organisation defines Palliative Care as:
"the
active total care of patients whose disease is not responsive to curative
treatment. Control of pain, of other symptoms, and of psychological, social and
spiritual problems is paramount. The goal of palliative care is achievement of
the best possible quality of life for patients and their families. Many aspects
of palliative care are also applicable earlier in the course of the illness, in
conjunction with anticancer treatment.
Palliative care:
- - affirms life and regards dying as a normal process
- - neither hastens nor postpones death
- - provides relief from pain and other distressing symptoms
- - integrates the psychological and spiritual aspects of patient care
- - offers a support system to help patients live as actively as possible until
death
- - offers a support system to help the family cope during the patient's illness
and in their own bereavement
Radiotherapy, chemotherapy and surgery have a place in palliative care,
provided that the symptomatic benefits of treatment clearly outweigh the
disadvantages. Investigative procedures are kept to a minimum."
For their complete
discussion on Palliative Care you can access their Internet site:
World Health Organisation
(WHO) Press Release on Palliative Care
Canadian
Palliative Care Association (CPCA),
43 Bruy_re
Street,
Ottawa, Ontario,
Canada
K1N 5C8
Tel: (613) 241-3663 or 1-800-668-2785
Fax: (613) 562-4226
E-mail: llysne@scohs.on.ca
Internet site: http://www.cpca.net
Association qu_b_ciose de sions palliatifs /
Quebec Assoc. of Palliative Care (QAPC)
2075 rue de Champlain,
Montr_al, Qu_bec,
H2L 2T1
Tel: (514) 527-2194
Fax: (514) 527-1943
Internet site: http://www.aqsp.org/
There are also many places listed in the
"Resources
in Montreal" section and in the
"Related
Sites on the Internet" section of our web site.
Though many libraries and
bookstores have titles on palliative care, one of the best sources in Montreal
is the EMedical Library at the Royal Victoria Hospital
room H4.01. As part of he McGill Comprehensive Cancer Centre they make a
wide and useful range of resources available to the public, principally:
- videos,
- brochures,
- publications,
- treatment guidelines,
- information referrals,
- contacts,
- international computer link
with access to cancer information databases.
For more information ,
please call Elizabeth Lamont.
Tel: 842-1231 extension 35293.
SOME BOOKS YOU MIGHT
FIND HELPFUL
There is a wealth of books written about death and dying, some offering
practical advice and guidance, others offering spiritual and emotional support.
Some books are better than others.
We offer here a partial
list, recommended by men and women who have lived and worked with people who
are dying. It is, at least, a place to start.
IN ENGLISH
Caring for Loved
Ones at Home
Harry van Bommel
For information on the English and French versions please click on Caring for Loved Ones at
Home Booklet
What Dying
People Want: Practical Wisdom for the End of Life
David Kuhl
What to do in the Event of Death
The English version of the Quebec government pamphlet What to do
in the Event of Death can now be downloaded from the Web.
or you can navigate the Quebec government site www.gouv.qc.ca
The French version - Que
faire lors d'un décès can also be downloaded or by visiting www.gouv.qc.ca
A Family Guide to Death and Dying
Jim Towns
Tyndale House, Illinois, 1987
Necessary Losses
Judith Viorst
Simon and Schuster: New York
Death: The Final Stage of Growth
Elizabeth Kubler-Ross
Prentice Hall, Englewood Cliffs, N.J., 1975
Choices
Harry Van Bommell
NC Press Ltd., Toronto, 1986
Twelve Weeks in Spring
June Callwood
Lester and Orpen Dennys, Toronto, 1986
When Your Friend Gets Cancer: How You Can Help
Amy Harwell
Harold Shaw Publishers, Illinois, 1987
I Don't Know What to Say: How to Help and Support Someone Who is
Dying
Robert Buckman
Key Porter Books, Toronto, 1988
How We Die: Reflections on Life's Final Chapter
Sherwin B. Nuland
Vintage Books, New York, 1995
Learning to Say Goodbye: when a Parent Dies
Eda J. Le Shan
MacMillan, New York, 1976
The Hospice Movement: A Better Way of Caring for the Dying
Sandol Stoddard
Vintage Books, Random House, N.Y., 1992
Transitions
William Bridges
Addison-Wesley, 1980
A Gift of Hope: How We Survive our Tragedies
Robert Veninga
Ballantine, 1986
How Can I help?
Ram Dass & Paul
Gorman
Knopf, 1985
The Ending of Time
J. Krishnamurti
Dr. David Bohm
Harper SF, 1985
Families and How to Survive Them
Life and How to Survive It
Both books by:
John Cleese and Robin Skynner, M.D.
Oxford University Press; 1935
Healing and the Mind
(Also recommended on video and available through many libraries)
Bill Moyers
Doubleday, 1993
The Healing Family: The Simonton Approach for Families Facing
Illness
Stephanie Matthews
Simonton & Robert L. Shook
Bantam, 1989
Mainstay: For the Well Spouse of the Chronically Ill
Maggie Strong
Little, 1988
A Grief Observed
C. S. Lewis
Bantam, 1983
How to Go on Living when Someone You Love Dies
Theresa Rando
Lexington Books, Lexington, Mass, 1988
* For Adults and Children
Tire Fall of Freddie the Leaf A Story of Life for All Ages
Leo Buscaglia
Slack Inc., 1982
* For Children
The Giving Tree
Shel
Silverstein
Harper-Collins, 1964
Talking About Death: A Dialogue Between Parent and Child (K-Grade 4)
Earl A. Groliman
Beacon Press, Boston, 1976
EN FRAN_AIS
Que faire lors d'un décès
Une versions PDF de ce
guide est aussi disponible en utilisant Acrobat Reader
Mourir
Accompagn_
Ren_e Sebag-Lanoe
Descl_e de Brouwer, Paris, 1986
Psychologie du Mourir et du Deuil
Jean-Luc H_tu
_ditions de M_ridien, Montr_al, 1989
Quand C'est une Question de Temps
Louison B_rub_
_ditions de Mortagne, Boucherville, 1987
Vivre Son Mourir
Isabelle Delisle
Lapierre
_ditions de Mortagne, Boucherville, 1982
La Perte d'un _tre Cher: Le travail du Deuil
Roger R_gnier
_ditions Qu_becor, Montr_al, 1991
Parents en Dell
Harriot Sarnen
Skiff
_ditions Robert Laffont, Paris, 1984
* pour enfants
Adieu Valentin
Maorit Kaldor
& Welche Oyent
L'_cole des Loisirs, Paris, 1990
L'horloge s'est Arr_t_e
Jasmine Dub_
_ditions Pierre Tisseyre, Collection Coccinelle, Montr_al, 1990
Comme Avant
Pili Mandelbaum
Pastel, Paris, 1990
Boule de R_ve
Lise Thouin
Montr_al, 1993
