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Advance Care Planning
Advance Directives, Representation Agreements,
and other 'end of life' affairs

On this page (click on the link below to jump to section)
Journeying Beyond 's EOL consulting services
(for more information on Advance Care Planning in general,
seeCINDEA 's Advance Care Planning page)
  The important of ACP - 'Voice = Choice'
What is Advance-Care Planning, and
what does Journeying Beyond offer?
  Advance Directive
Expressed Wishes/Personal-care Choices
Representation Agreement
Power of Attorney

Clarification of new terms: After winning the right to continue to use the term 'death midwife' in the lower Supreme court (CMBC vs MaryMoon), it was lost in the appeal (CMBC/AGBC vs MaryMoon).

Although we are continuing to explore ways to reclaim the term 'death midwife', we are legally bound (in BC) to use new terms for the time being.  The terms we are currently using are:

Practitioner of death midwifery: someone who is practicing the philosophy of midwifery applied to deathcare, through the pan-death continuum.

Pan-death guide: someone who offers death midwifery support in a continuum of pre-death (EOL/death doula role), immediately after death (home funeral guide role), and funeral/memorial ceremonies (celebrant role).

For the most part on this site, 'practitioner of death midwifery' and 'pan-death guide' will be used interchangeably.  We realize that this may be a little confusing.  However, we felt it was important to retain the connection to 'death midwifery' (philosophy), as well as have a term that describes 'what they do' (approach in practice) — as 'death midwife' did both.

Disclaimer: Practitioners of death midwifery/pan-death guides are not conventional (birth) midwives or health professionals, nor are they members of any of the Colleges of Midwives in Canada   


The important of ACP 'Voice = Choice'

Advance-care planning may be one of the most important preparations for your life that you ever make — certainly as important as a will or Power of Attorney (finances and legal issues) document, or even a retirement fund.   Its focus is maintaining your individual choice about how your life progresses — your own specific 'voice' — especially when you may not be able to speak for yourself.   At that difficult moment — when you receive a terminal diagnosis or find out that you have a progressive chronic illness, or recognize that you are in early-stage dementia, or suffer any of the range of unexpected medical conditions (stroke, coma, serious accident, etc.) the primary issue of your life will likely be your health and personal care.   [Note: an Advance Directive only comes into effect when you are not able to speak for yourself.   If you are capable of answering simple questions — even with a hand movement or blink of your eyes — you will retain the power to make immediate choices on your treatment.]

Until the 1970s, many accidents and chronic illnesses resulted in an immediate death or fairly short dying period.   That has radically changed in the last several decades.   Paramedics and hospitals provide immediate support to those in accidents or with heart attacks/etc.; and modern technology and practices have lengthened the time in which one might be nearing death.    Our culture has not yet caught up with the personal and practical implications: although most people recognize that they should do advance-care planning (even early in life, before any concern about their health), few actually do it — as the studies below show.

In 2004, the Canadian Hospice and Palliative Care Association and GlaxoSmithKline released the results of an Ipsos-Reid survey of 1055 Canadians (Ipsos-Reid, 2004). Part of this survey assessed attitudes and behaviours relating to ACP. With this sample size the results are considered to accurately reflect, within 3.1 percentage points, the entire adult Canadian population had it been polled.



U.S. National Health Statistics Report April 27, 2011
During 2007, patients under age 45 had a significantly lower likelihood of having advance care planning at interview than older patients (12.0% compared with 21.2% of those aged 45-64 and 33.6% aged 65 or over.
White home health care patients were about 2½ times as likely to have advance care planning as black home health care patients (32.0% compared with 12.5%)

Living wills (16.8%) and durable power of attorney (13.7%) were the two most common types of advance care planning instruments reported for home health care patients; about 8% (data not shown) of home health care patients had both a living will and a durable power of attorney.


Survey results revealed that:

  70% of Canadians had not prepared a living will (p. 55).
  The majority of Canadians (eight in ten) agreed that people should start planning for EOL when they are healthy (p.49) Home health care patients with advance care planning at interview, by age and race: United States, 2007
47% of Canadians have not designated a surrogate decision-maker (p. 55).
Fewer than 44% Canadians have discussed EOL care with a family member (p. 53).   12% under 45 years of age
21.2% 45-64
Although Canadians felt that EOL care was an important discussion to have with a physician, only 9% had done so (p. 53).   23.9% 65-74
  33.6% 75-84
  41.6% 85+
Source: B.C. Cancer's Cross Cultural Considerations in Promoting Advance Care Planning in Canada (2008) Source: CDC/NCHS National Home and Hospice Care survey 2007

Every health-care website — whether sponsored by the government, various associations focusing on specific illnesses/conditions, or health/personal care agencies — is now encouraging their readers to address their advance-care planning (ACP) NOW, before the on-set of a chronic illness or a sudden medical condition.

All of us would like to believe that we will be aware enough to make the necessary medical/personal care choices when needed, and that we only need to worry about that (if at all) towards the very end of our life.   Unfortunately, accidents and chronic illnesses can change our lives unpredictably, even in our early adult years.

We would also like to believe that our families will understand what our wishes would be, and be available to pro-actively advocate for them.   However, in the modern world, many family members live at great distances from one another, have different lifestyles and approaches to 'end of life' issues, and/or may be estranged.   You need to ensure that 'your voice' in decisions is truly 'your choice' — and not the fears or biases of others (whether family members, friends or medical staff).

  "My eighteen-year-old daughter and only child, Amy, was involved in a car accident in 2001… It was understandable why having an advance directive that would ensure her dignity and quality of life up to the end had become of utmost importance to Amy (which she did do)... I knew that Amy was counting on me to speak her mind for her.   I did what she asked… Honoring Amy's wishes by allowing her to die was…is…well…hard beyond description by the spoken or written word.    But as I struggle to endure my grief and loss, I have peace of mind in knowing that what I did for Amy was right."
(from article written by her mother, on the Compassion and Choices website, called Amy's Story also author of "PINKY-SWEAR: Honoring My Daughter's Right to Die")

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What is Advance-Care Planning & what does Journeying Beyond offer?

The more formal elements of ACP (advance-care planning) are an Advance Directive (now a legal document in itself in B.C.) and a Representation Agreement.   However, ACP also includes all choices for your pan-death experience (that is, pre-death, especially after terminal diagnosis or with a progressive chronic illness; and post-death, including post-death care, and funeral and/or memorial arrangements).   These less formal choices are often referred to as 'Expressed Wishes' or 'Personal-care Choices'.

An Advance Directive is a legal document stating your choices for medical treatment that speaks for you — 'your voice' — if/when you are not able to speak for yourself.   As of September 2011 in B.C., your choices in this document legally have to be followed by your substitute decision-maker/Representative and all medical staff.   Therefore, it is important to make your choices very clear, and available in a written document (although verbal wishes will be considered as well).    Your GP and specialists should also have a copy in advance, AND be willing to follow it — otherwise, you might consider finding new doctors before a Representation Agreement or Advance Directive would come into play.

[Note: paramedics are not required to follow the Advance Directive, unless they are made aware of it in time.  They will often check the fridge door to see if one has been posted there.   You can also use a medical alert bracelet for a 'No CPR' (DNR order) — although this is only one element of an Advance Directive.    Other means of notifying paramedics of a 'No CPR' order are a wallet card or tattoo (on your chest or wrist).]

It is imperative that you discuss your choices (preferably in a written Advance Directive) with all of your family members and close friends; and that your substitute decision-maker/ Representative, doctor, and any medical facility caring for you have a copy of the Advance Directive as well.

One person's approach to a clear 'No CPR'/DNR order

'No CPR' tattoed her left chest

'DNR' tattooed on her right wrist

Journeying Beyond 's 'EOL consulting services' uses a very comprehensive values-based Advance Directive that covers all major medical situations and possible interventions, the primarily options for treatment (or not, as you wish), and space to personalize your choices even further — as well as 11 appendixes supporting the clarification of your 'expressed wishes/personal care' options. [Note: A condensed version outlining the topics of the medical condition and personal-care options can be downloaded by clicking here.]

Journeying Beyond provides
  a copy of the full Advance Directive/Expressed Wishes template,
explanation of what the medical conditions and treatment options in the template refer to,
direct support to work through your choices, and
a final review of the document to ensure that there are no contradictions in choices —
as well as facilitating meetings with family and close friends to discuss the options and support you in your choices.

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Expressed Wishes/Personal-care Choices

Journeying Beyond also provides support to clarify your Expressed Wishes — both pre-death and post-death (please see Journeying Beyond''s Practitioner of Death Midwifery Services on the Death Midwifery page for further clarification of range of initial options).

Journeying Beyond (through E~merging Beyond services) can also provide mediation sessions — if family members or friends have serious concerns about your Advance Directive choices, there is dissention over who should be named as your legal Representative, or other tensions arising out of your choices.

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A Representation Agreement is a legal means by which you choose a specific person who will both advocate for your choices in your Advance Directive, and make medical or personal-care decisions in unforeseen circumstances (based on a consistency with the specific choices within your Advance Directive).   As of September 2011 in B.C., it is not necessary to consult with a lawyer to write a Representation Agreement (for either Standard/section 7 version which is for general health and personal care decisions, or a Enhanced/section 9 version which includes withholding or withdrawing life-support).   [Note: a considerable amount of information on Advance Directive and Representation Agreements poses them as mutually-exclusive, or at least conflicting, documents.   They are not although, now in B.C., an Advance Directive has priority over a Representative's decisions.   However, properly worded, they are collaborative documents: and Journeying Beyond recommends that you have both.]

Your Representative can be a specific family member (one who you trust to follow your choices) or a close friend.   In either case, you need to discuss your choices with them thoroughly, and make sure that they are willing to follow your directions (even if they may not be consistent with your Representative's own personal choices or values).   It is wise to have at least one alternative Representative (who can take over if your primary Representative is not available), and possibly even a second alternate (which might be your faith community, or any other group/organization that you are closely involved with).   Your Representatives should have at least one copy of your Advance Directive for themselves, and a few other copies to make available to any medical staff that is treating you.   

Journeying Beyond provides a Representation Agreement template, which was specifically developed to accompany its Advance Directive and ensures that the two documents are consistent with each other.   The service also provides an explanation of the options within a Representation Agreement, support to fill the agreement out, and facilitation of meetings with your Representatives to clarify their role (as well as helping you to clarify your choices in the Advance Directive to them)

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A Power of Attorney document is the legal document which names a specific person (your 'attorney' re this document) to take care of your financial and legal concerns, if you are not able to (before your death: executor deals with all financial/legal issues post-death).   In B.C., it does not including health and personal-care issues (that is in the Representation Agreement, which is separate); and does not need to be draw-up or signed by a lawyer.   There are four different variations of the document — mostly based on when and how Power of Attorney comes into effect (the major ones are enduring — starting before 'incapacity' and continuing until death; and springing — starts only when deemed 'incapable', or otherwise unable to speak for one's self, and continuing until death or recovery).

Journeying Beyond provides a basic Power of Attorney document.   If your financial or legal affairs are complicated, we recommend that you consult with a lawyer and/or accountant. [Note: if you explore the internet for information on types of Power of Attorney, please make sure that you are reading post-2011 material the time when the B.C. government clarified the focus and limitations of PoA responsibilities, as well as the 4 different kinds; and that PoAs no longer require the signature of a lawyer, as long as they clearly designate appropriate responsibilities.    There is, unfortunately, a lot of old information on the web even by reputable law firms that is no longer entirely accurate or complete.]

Please contact Pashta for information on fees and contracts for Advance-care Planning services.


Whether you choose to use Journeying Beyond 's EOL consulting services or not, PLEASE do an Advance Directive, Representation Agreement, and Power of Attorney.    There are further resources for doing so (on your own) on our Resources page under Vancouver Island Advance-Care Planning or B.C. Advance-Care Planning.

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