A lack of knowledge about preferences for care can result in confusion
and conflict between family members and health professionals at a
OTTAWA, April 7 /CNW/ - Over 25 associations across Canada have joined
together to champion April 12th as National Advance Care Planning Day, a day of awareness and action
for Canadians. The Advance Care Planning National Task Force, a group
representing professional organizations and non-governmental groups
from across Canada, has developed the "Speak Up: Start the conversation
about end-of-life care" campaign to remind Canadians to think about and
talk about their wishes for end-of-life-care.
"Most of us hope to die peacefully and able to communicate with others
until the very end, but death usually doesn't occur this way," says
Sharon Baxter, Executive Director of the Canadian Hospice Palliative
Care Association (CHPCA) and a member of the Task Group. "Advance care
planning helps others make decisions on your behalf when you cannot
speak for yourself."
Advance care planning is a process of reflection and communication about
personal care preferences in the event that you become incapable of
consenting to or refusing treatment or other care. Your plan may
include information about procedures such as CPR and mechanical
ventilation, as well as other personal information, such as spiritual
preferences or specific wishes for family members or friends. One of
the most important aspects of advance care planning is naming and
having a conversation with a Substitute Decision Maker - someone who
will speak on your behalf and make decisions for you - but only when
you are not able to do so yourself.
According to a 2004 poll conducted by Ipso-Reid on behalf of the
Canadian Hospice Palliative Care Association and GlaxoSmithKline, eight
in ten respondents agreed that people should start planning for end of
life when they are healthy, however 70% of them had not prepared a
plan, and 47% had not designated someone to speak for them if they are
unable to communicate.
A 2008 study found that the absence of Advance Care Planning, in all its
forms, was associated with worse patients' ratings of quality of life
in the terminal phase of the illness and worse ratings of satisfaction
by the family during the terminal illness or in the months that follow
Research also indicates that patients who have end of life conversations
with health professionals and family members are much more likely to be
satisfied with their care, require fewer aggressive medical
interventions at the end of life and are more likely to take advantage
of hospice resources or die at home.
The Speak Up campaign includes a website (www.advancecareplanning.ca) with tools to help people start these sometimes difficult
conversations, as well as advance care planning resources such as
workbooks, wallet cards and links to provincial / territorial
legislation and planning information.
"As health care technologies and life saving interventions continue to
improve and people live longer - many with complex medical conditions -
advance care planning becomes increasingly important," says Ms. Baxter.
"We need to communicate our feelings around the use of certain
procedures at the end of life, and what we believe gives our life
meaning. These are personal, individual choices that every Canadian
deserves at the end of life. Make sure your voice is heard."
For more information: www.advancecareplanning.ca
The Canadian Hospice Palliative Care Association (CHPCA) is a national,
bilingual charitable non-profit association with membership comprised
of individuals and hospice palliative care programs and services from
every province and territory. The CHPCA is a member of the National
Advance Care Planning Task Group, comprised of representatives from a
number of organizations and professions across Canada. The Task Group
has collaborated to develop Advance Care Planning in Canada: A National
Framework and Implementation and the Speak Up campaign.
Advance Care Planning Backgrounder
According to Statistics Canada, each year, more than 248,000 Canadians
die, and by 2020, that number will increase to over 330,000.
In a recent national survey, more than 80% of respondents are concerned
the quality of health care in Canada will decline as a result of
increased strain on the health care system as our population gets older1
In Canada, seniors 80+ represent the second fastest growing age group -
one in five of these seniors will die in hospital, even though a number
of them would prefer to die at home or in a palliative care setting.
In a 2004 poll conducted by Ipso-Reid on behalf of the Canadian Hospice
Palliative Care Association and GlaxoSmithKline, 70% of Canadians had
not prepared a living will or advance care plan, and 47% of Canadians
had not designated a Substitute Decision Maker to make healthcare
decisions for them if they are unable. Fewer than 44% of respondents
had discussed end-of-life care with a family member
Research indicates that patients who have end-of-life conversations with
their doctors and family members are much more likely to be satisfied
with their care, will require fewer aggressive interventions at the end
of life, place less of a strain on caregivers and are more likely to
take advantage of hospice resources or die at home. 2,3
A 2008 study found that the absence of Advance Care Planning, in all its forms, was associated with worse
patients' ratings of quality of life in the terminal phase of the
illness and worse ratings of satisfaction by the family during the
terminal illness or in the months that follow death.2
A 2010 Canadian study of hospitalized, elderly patients identified that
there is a huge unmet need, that providing more support for end-of-life
conversations and advance care planning will have a large positive
impact on improving end-of-life care in Canada.4
What is an advance care plan?
An advance care plan is a written document that describes your wishes at
the end of life, in the event that you cannot speak for yourself - but
it's also the conversation that you have with family, friends and
health professionals to talk about those wishes.
Your plan may include information about your values, goals and
preferences for procedures that you do or don't want to have (such as
CPR or mechanical ventilation as well as other information about your
care at the end of life (for example, religious rituals, being able to
see a family member, dying at home or in palliative care, etc.). It
should also name a Substitute Decision Maker - the person who will
speak for you if you cannot.
Who should make an advance care plan?
Every adult should make a plan. You can't predict how or when you will
die - so having a plan ensures that others know your wishes and that
your voice will be heard if you cannot speak for yourself.
When is an advance care plan used?
You plan is only used if you are unable to make your own health care decisions (e.g. you
are in a coma or your illness has impaired your ability to make
decisions). Your representative can use it to guide your care and to
express wishes on your behalf.
Can an advance care plan be changed?
Our lives - and the people around us - change over time. You will want
to review your advance care plan regularly and revise it to be sure it
reflects your wishes. Remember, it will only be used if you cannot
speak for yourself.
Is an advance care plan the same as a Living Will?
A living will is a form of advance care planning - but it's also
important to have a conversation with those who will make decisions
about your care - they may have questions about your wishes. You should
also review your advance care plan regularly to be sure that it still
reflects your feelings, beliefs and values about end of life care.
Each province and territory has specific legislation to support the
documentation of advance care plans.
Advance Care Planning in Canada: National Task Group
(Members as of March 1, 2011)
Sharon Baxter, Canadian Hospice Palliative Care Association
Shelley Birenbaum, Shelley R. Birenbaum Professional Corporation, Canadian health law
Maryse Bouvette, Bruyère Continuing Care;
Karen Chow, The GlaxoSmithKline Foundation
Nanci Corrigan, Channel 3 Communications
Bert Enns, Alberta Health Services
Darren Fisher, National Lung Health Framework
Romayne Gallagher, Canadian Society of Palliative Care Physicians / College of Family
Physicians of Canada
Louise Hanvey, Project Manager, Advance Care Planning in Canada, Canadian Hospice
Palliative Care Association,
Daren Heyland, Queen's University, Canadian Researchers at the End of Life Network
Melody Isinger, Quality End-of-Life Care Coalition of Canada
Larry Librach, University of Toronto, Division of Palliative Care, Department of
Family and Community Medicine
Irene Nicoll, Canadian Partnership Against Cancer
Laurie Anne O'Brien, Canadian Hospice Palliative Care Association Nurses Interest Group and
Regional Palliative Care, Eastern Health, Newfoundland and Labrador
Denise Page, Canadian Cancer Society,
Lonny Rosen, Gardiner Roberts LLP and Canadian Bar Association
Carolyn M. Tayler, Director, End-of-Life Care, Fraser Health Authority
1 Ipsos Reid. 10th Annual Report Card on National Health Care. www.cma.ca, last accessed Aug. 28, 2010
2 Wright, AA, et al. Associations between end-of-life discussion, health
care expenditures, JAMA, 2008, 300 (14) 1665-1673
3 Heyland, DK, Allan DE, Rocker G, Dodek P, Pichoa D, Gafni A. Discussing
prognosis with patients and their families near the end of life. Impact
on satisfaction with end of life care. Open Medicine 2009, 3(20: 71-80
4 Heyland DK, Cook DJ, Rocker GM, Dodek PM, Kutsogiannis DJ, Skrobik Y,
Jiang X, Day AG, Cohen SR. Defining priorities for improving
end-of-life care in Canada. Can Med Assoc J 2010;182(16):E747-E752.
SOURCE Canadian Hospice Palliative Care Association
For further information:
For more information or to set up an interview, please contact:
Canadian Hospice Palliative Care Association
Phone: 613-241-3663 ext. 229