Questions and Answers about Palliative Care

Palliative Care Questions andAnswers

This section attempts to address a few generalquestions on Palliative care and should be thought of as a starting point inlooking for help. It should in now way substitute for frank an open discussionwith your health care professional team.

What is Palliative Care ?

The idea of Palliative Caremay be new to many people. The aim of traditional medical practice has been tocure illness. However, in the last twenty years or so, the concepts of pain andsymptom management, and psycho-social support for persons living with aterminal illness, as well as for their families and caregivers, have becomemore prominent.

The goal of Palliative Careis the achievement of the best quality of life for patients and their families.

A "family" is whoever the personsays his or her family is. It may include relatives, partners and friends.

Led initially by thehospice movement in England, and largely due to the work of Dame CicelySaunders at St. Christopher's Hospice, palliative care or hospice care hasbecome a worldwide phenomenon. In Canada, a number of centres have developedexcellent palliative care programs which have been recognised around the world.

An important objective ofpalliative care is relief of pain and other symptoms. Palliative care isplanned 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 themain 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 remainingtime in comfort and dignity.

Palliative care servicesare helpful not only when a person is approaching death, but also at earlierstages in the illness. Palliative care may be combined with treatments aimed atreducing or curing the illness, such as chemotherapy.

Families also benefit fromsupport when their loved one is dying and after his or her death.

Palliative care is plannedand delivered through the collaborative efforts of an interdisciplinary teamincluding the individual, family, caregivers and service providers. It shouldbe available to the individual and his/her family at any time during theillness trajectory and bereavement. Where possible, palliative care should beavailable in the setting of personal choice: home, hospice or hospital.

While many serviceproviders may be able to deliver some of the therapies that provide comfort andsupport, the services of a specialised palliative care program may be requiredas the degree of distress, discomfort and dysfunction increases.

Is there a differencebetween palliative care and hospice care?

In Canada, we tend to useboth terms to refer to the same thing this specific approach to care. Howeversome people use hospice care todescribe care that is offered in the community rather than in hospitals.

Caregiver Support

Family members may beconcerned about whether they will be able to look after their ill familymember, especially when the person is being cared for at home.

Palliative care servicesthat 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 apalliative care service. Community clinics (CLSCs)are currently, being organised to provide palliative care at home.

For more information, speak with your physician.

The World HealthOrganisation defines Palliative Care as:

"theactive total care of patients whose disease is not responsive to curativetreatment. Control of pain, of other symptoms, and of psychological, social andspiritual problems is paramount. The goal of palliative care is achievement ofthe best possible quality of life for patients and their families. Many aspectsof palliative care are also applicable earlier in the course of the illness, inconjunction 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 untildeath

- - offers a support system to help the family cope during the patient's illnessand in their own bereavement



Radiotherapy, chemotherapy and surgery have a place in palliative care,provided that the symptomatic benefits of treatment clearly outweigh thedisadvantages. Investigative procedures are kept to a minimum."



For their completediscussion on Palliative Care you can access their Internet site:

World Health Organisation(WHO) Press Release on Palliative Care

 

Whom can Icontact for general information ?



CanadianPalliative Care Association (CPCA),

43 Bruy_reStreet,

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

"Resourcesin Montreal" section and in the

"RelatedSites on the Internet" section of our web site.

Where can I find books on the subject ?

Though many libraries andbookstores have titles on palliative care, one of the best sources in Montrealis the EMedical Library at the Royal Victoria Hospital  room  H4.01. As part of he McGill Comprehensive Cancer Centre they make awide 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 MIGHTFIND HELPFUL



There is a wealth of books written about death and dying, some offeringpractical advice and guidance, others offering spiritual and emotional support.Some books are better than others.

We offer here a partiallist, recommended by men and women who have lived and worked with people whoare dying. It is, at least, a place to start.

IN ENGLISH

Caring for LovedOnes at Home

Harry van Bommel

For information on the English and French versions please click on Caring for Loved Ones atHome Booklet

What DyingPeople 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 doin 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 - Quefaire 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 isDying

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 & PaulGorman

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 manylibraries)

Bill Moyers

Doubleday, 1993



The Healing Family: The Simonton Approach for Families FacingIllness

Stephanie MatthewsSimonton & 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

ShelSilverstein

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 ceguide est aussi disponible en utilisant Acrobat Reader

MourirAccompagn_

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 DelisleLapierre

_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 SarnenSkiff

_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 ThouinMontr_al, 1993