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How do you want to live your life at the end?


Advance care planning is about more than just planning your death; it’s about understanding how you want to live your life.  It’s often a deeply personal experience that involves reflecting on what is important and meaningful to you and sharing your desires, values and beliefs with those around you so that they are aware of your health care wishes should you become incapable of communicating them in the future. It’s not a static process; instead, it changes over time as you enter various life stages and your priorities change.

It’s not always easy, but taking the time to reflect on and discuss these issues can lead to better experiences at the end-of-life. Yet, despite the importance of advance care planning, a 2012 study done by Ipsos Reid for Canadian Researchers at the End of Life Network (CARENET) and Fraser Health showed that 86% of Canadians are not familiar with the term, less than half have talked to a family member or friend about their wishes for care if they become ill and are unable to communicate, and only 9% have ever spoken to a healthcare provider about their wishes.

Last year we at the College of Physicians and Surgeons of Ontario hosted a forum of experts in the end-of-life care field and learned that if we wanted to help make meaningful improvements to end-of-life care, there was work to be done to break down communication barriers and replace misunderstandings and assumptions with informed discussion. With this in mind, we have started a conversation about end-of-life care that I hope you will join.

As part of this conversation we’ve talked with some doctors, advocates, and patients about advance care planning to try and identify some of the specific challenges faced by both doctors and patients. These interviews helped to shape my thinking and made it clear to me just how important communication is when it comes to advance care planning.

Naturally, doctors and patients alike may be uncomfortable discussing mortality. Doctors may not want to alarm their patients or take away their hope by broaching the topic, patients might not be ready to ask themselves some tough questions, and families may not be ready to confront the death of their loved one. But just taking the time to ask some questions and get the ball rolling can be really helpful.

For example, if doctors just asked a patient whether they’ve ever talked to anyone about their treatment wishes, it can be a big step forward. Asking this question allows a doctor to extract the information they need if the answer is yes, or encourage their patients to start thinking about advance care planning if the answer is no.

The benefits to patients are clear as well. Reflecting on these issues and having conversations with those around you will help to avoid situations where families are confronting the death of a loved one, with no real sense of how to proceed. One patient we spoke to recounts the deaths of both her parents, commenting that advance care planning helped both of them spend their final days in a way that was consistent with their wishes and gave everyone “a sense of peace.”

Moreover, choosing a substitute decision maker can actually help people to think about and reflect more deeply about what’s important to them and what they value most in life.  And while it’s true that nobody can anticipate exactly what might happen in the future, when the people you trust have an understanding of what your health care and life wishes are, it’s far easier for them to make decisions on your behalf.

We need to normalize these conversations and make them a part of our everyday practice. Doing so will give us ample time to think through and consider the issues, as opposed to merely reacting at the time of crisis. By taking these steps and following through with advance care planning, it has been shown that we can increase the quality of end-of-life experiences for both patients and their families.

Ultimately, we all have a role to play in ensuring that appropriate end-of-life care is provided. Doctors in particular have a role to play in breaking down communication barriers, engaging with our patients, and encouraging them to think about and discuss these issues so that we can act appropriately.

Let’s keep the conversation going.

Rocco Gerace is the Registrar of the College of Physicians and Surgeons of Ontario.

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3 comments

  1. Ada Giudice-Tompson

    I agree, candid communication is important for end-of-life care. Tragic, however, that in life, iatrogenic addiction and death is still ignored by medical leadership. Prescription opioids for chronic non cancer pain is causing more harm to patients. Patients do not have to misuse opioids to suffer harm. When you try to balance the damage caused by pain against the damage caused by drug abuse, NOBODY WINS, focus should be on best way to treat pain. Dr. Gerace, if the medical community does not end conflict of interest/influence with pharmaceutical industry and fails to demand drug transparency, patients will need to have ‘advance care planning’ discussions earlier & earlier. Let’s promote health & wellness and a long life first….. We have lost too many loved ones to prescription opioids. Informed Care Not Sales. http://www.rxreform.org

  2. Judith Wahl, Executive Director, Advocacy Centre for the Elderly

    Yes the conversations are very important . BUT there is a LOT of confusion about “advance care planning” and health care consent.

    MUCH of what was detailed in the CPSO articles were in fact NOT advance care planning but was about health care consent. Health professionals by law have the obligation to TALK to patients and have discussions about treatment options and do care planning – which is part of the consent process. That’s NOT “advance care planning” — so the question is why aren’t health professionals having the conversations since there is a requirement to get an informed consent from patients except in an emergency ?

    In summary health care consent requires health practitioners offering treatment to talk to their patient about their condition, and the treatment options for that condition. That would include talking about the risks, benefits side effects, alternatives to the treatment and what would happen if the patient refused the treatment. Consent also involves then care planning — talking with patients about goals of care etc.

    Advance care planning is NOT decision making about future care although that is how its often described. Even if you advance care plan, there is still a legal obligation of the health professional to get an informed consent from you at the time of treatment because the ACP is often done out of context of your actual condition ( health changes) or without the information to permit you to make an informed choice. Decisions ( consents ) cant be done without information.

    A patient can make decisions about some future care based on their present health condition — that’s CARE PLANNING and that’s consent because the decision are made in context of the patients present health condition. That’s not advance care planning. Many decisions about end of life are CONSENT not ACP because you as the patient are at end of life so you are informed and making decisions about treatment options.

    Advance care planning does involve some decision making – either confirming who would be your automatic SDM in the hierarchy of SDMs in the Health Care Consent Act OR the preparation of a POA Personal Care to CHOOSE someone or more than one person to act as your future SDM particularly if you dont want the default SDM in the hierarchy to be your SDM in the future. Advance care planning may also involves expressing WISHES ( not decisions) about future care, and your communication with your future SDMs and family about those WISHES as well as the communication about your values, beliefs, and feelings about what is quality of life.

    It is important to not forget about informed consent and to not confuse ACP with consent. Even if you have created the most detailed AC plan in the world — and put everything in writing — that’s not consent and health practitioners cannot take direction from that AC plan unless they reconfirm particulars with you and get an INFORMED consent from you. Likewise even if a patient has a written AC Plan , and is now incapable, the health practitioner MUST turn to the patients SDM to get a consent or refusal of consent to any treatments of the incapable person . Its is the SDM that interprets the AC Plan as drafted by the patient . not the health practitioner . Too often now we see health facilities getting tick box from patients and using those as generalized consents without turning to the capable patient or the SDM of the incapable patient ., just because there is some written AC Plan . If that is done, the Health Care Consent Act is not being followed and consent is not being obtained. That then is a problem for both the patients and the health practitioners.

    In Ontario the wishes part of AC Planning can be written, oral, or communicated by alternative means . Even if a person prepares a written advance directive, they can change their mind and orally do an override to anything previously written . This is why consent in the Health Care Consent Act requires the health practitioners to talk to a PERSON ( not just read a document) and get an informed consent from a patient if capable of the patients SDM if the patient is incapable. Thats why the SDM INTERPRETS the written and oral directives not the health practitioner .

    So — do those articles in the CPSO magazine explain consent and the need for consent and advance care planning in the context of these requirement for consent? I leave it to you to judge. I know I was consulted for one of those articles and nothing of significance of what I explained about consent and the relationship of Consent and ACP was included in the article.

  3. Dr.A.Franklin

    What’s the joke? Where the tie? As an ex-ER doc RG not an Expert on Palliative Care. Getting on the
    End of Life political bandwagon. There is an OMA Section of Palliative medicine who members know about the problems of dying. The politically correct idea of dying at home is fine provided the family can provide 24-practical nursing incl. cleaning, oral hygiene, feeding, bed making (often in a rented hospital bed as normal beds are too low). bed pan use, pressure sore prevention & treatment with expensive meds.& equipment such as a fluctuating air mattress Giving drugs by mouth and injection. Use of Oxygen and urinary catheters. Also available MDs to visit at night for acute respiratory symptoms or severe pain. Can be done at home if unlimited money and time. Many families do not like to see their inheritance melt away. If Abortion on Demand legal in Canada why not Physician assisted suicide. Saves an expensive trip to Switzerland.

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