Backgrounder: Advance care planning

Prepared for EvidenceNetwork.ca by Nanci Corrigan

Daughter holding her mother hand in hospital

What is advance care planning?

Advance care planning is a process of reflection and communication about personal care preferences in the event that an individual becomes incapable of consenting to or refusing treatment or other care. The most important aspects of advance care planning are choosing one or more Substitute Decision Makers — someone who will speak on the individuals’ behalf and make decisions for them if they are not able to do so themselves.

Advance care planning means this individual has to have a discussion with family and friends, especially the Substitute Decision Maker — the person who will speak for them when they cannot speak for themselves. It could also include writing down their wishes, and may even involve talking with healthcare providers and financial and legal professionals.

Relevant research

  • A March 2012 Ipsos-Reid national poll found that 86% of Canadians have not heard of advance care planning. Less than 50% have had a conversation with a family member or friend about healthcare treatments if they were ill and unable to communicate.
  • Recent results from the multi-year ACCEPT study (Advance Care Planning Evaluation in Hospitalized Elderly Patients) revealed that the correct patients’ preferences for end of life care was written in their medical records only 30% of the time.
  • The ACCEPT study also found that although nearly 48% of patients had completed an advance care plan and 73% had named a Substitute Decision Maker, only 30% had told their physician about it.
  • 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.
  • A 2008 study discovered that the lack of advance care planning resulted in worse patient 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.
  • A 2010 Canadian study of hospitalized elderly patients found that offering more support for end of life discussions and advance care planning will have an immense positive impact on improving end of life care in Canada.

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.

It’s also important to name and talk to your Substitute Decision Maker — the person who will speak for you if you cannot speak for yourself — about your wishes for care. If you have a written plan, your Substitute Decision Maker should have a copy.

When is an advance care plan used?

Your 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 Substitute Decision Maker can use it to guide your care and express wishes on your behalf.

Can an advance care plan be changed?

Our lives — and the people around us — change over time. You’ll want to review your advance care plan regularly and revise it to be sure it reflects your wishes. Your Substitute Decision Maker will be consulted and your plan used only 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 is very important to have a conversation with those who will make decisions about your care — so they know 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.

Experts available for interview

Harvey Chochinov, PhD
University of Manitoba
Palliative Care, Coping and End of Life Care
204-975-7728 | harvey.chochinov@cancercare.mb.ca

Verena Menec, PhD
University of Manitoba
Healthy Aging, End of Life Care
204-272-3184 or 204-474-9176 | verena.menec@med.umanitoba.ca

Sharon Baxter
Executive Director

Canadian Hospice Palliative Care Association
613-241-3663, ext. 227| SBaxter@bruyere.org

Dr. Daren Heyland MD, MSc.
Scientific Director

Clinical Evaluation Research Unit
Kingston General Hospital
613-549-6666, ext 4847| dkh2@queensu.ca

Louise Hanvey
Project Manager

Advance Care Planning in Canada Project
613-421-6471| LHanvey@bruyere.org

Our commentaries on advance care planning

Our videos on advance care planning

Further reading

  • Research related to end of life care, end of life decision-making and advance care planning: www.thecarenet.ca
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