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Planning for care at the end of life: our collective responsibility


Catherine White is a 62 year-old potter and realtor from St. Joseph Island, Ontario. In 2009 she was celebrating her 40th wedding anniversary in Cozumel, Mexico when she felt a funny sensation in her left leg. Two surgeries and 4 years later, she lies in a hospital bed with a sarcoma that has spread to her lungs.

Although White praises the care she has received, she cannot recall a time that any health care professional approached her about her wishes for care at the end of life, known in the health care system as advance care planning.

“I don’t think it was ever discussed. It was more the now kind of thing. What the possibilities were, what the outcome could be, the only thing that was explained to me was that the sarcoma could metastasize but that was it. It was always about what they were going to do now.”

Recently, she underwent a course of chemotherapy with the hopes of shrinking the tumor in anticipation of surgery. Unfortunately, the first round of chemotherapy left White nauseated, anemic and profoundly weak, with little change in the size of the tumor. She gathered her husband and two children to let them know she’d had enough.

“Nobody asked me that. I made that decision on my own.” In fact, throughout her four-years living with cancer, White had never even heard of the term advance care planning.

Many Canadians don’t plan ahead

White is not alone. A March 2012 Ipsos-Reid national poll revealed that a staggering 86% of Canadians had not heard of advance care planning.

Healthy Debate has previously highlighted how comprehensive advance care planning can improve patient and caregiver satisfaction, and reduce unwanted admissions to hospital and aggressive interventions at the end of life.

But respecting patients’ goals of care at the end of life will require more than getting the public to complete advance directives.

Moving beyond traditional advance directives

Traditional advance medical directives are intended to give patients no longer able to make decisions for themselves a way to guide the course of their medical treatment. However, mounting evidence suggests that even where advance directives exist, individuals’ preferences for care at the end of life are not consistently followed.

“An advance directive is a legal document subject to interpretations about what patients may or may not want at the end of life—it’s not very specific,” notes lawyer Amy Vandenbroucke, Executive Director for the National Physician Orders for Life Sustaining Treatment (POLST) Paradigm Task Force.

As a result, the National POLST Paradigm began in Oregon in 1991, and offered an approach to end-of-life planning that translates a patient’s goals of care into specific medical orders to be honored by physicians and other health care workers at a time of medical crisis.

“The POLST is a medical order,” explains Vandenbroucke. “It’s signed by a doctor and states the orders. It’s based on a conversation between patients, loved ones, and health care providers.”

Importantly, POLST orders are valid across different care settings, with the intent of being honoured by everyone from emergency first responders in the community to physicians in an acute care facility.

Compared to a traditional advance directive that is often completed years in advance to inform potential medical catastrophe such as cardiac arrest or ventilator use, POLST specifically addresses current or immediately likely medical decisions. In addition to cardiopulmonary resuscitation orders, A POLST form (available here) provides orders for the use of antibiotics for infection, artificial feeding and fluids, and transfers of care between facilities.

“Advance directives are futurist documents that aren’t needed in the same time frame,” notes Dr. Susan Tolle, a general internist at Oregon Health & Science University and a founding member of the POLST program. “A POLST form takes your advance directives and turns them into orders when you have illness and frailty,” she comments.

A 2010 study of 1,711 nursing facility residents in Oregon, Wisconsin, and West Virginia reported that for residents who preferred a “comfort measures” approach to care (no interventions or medications which are not related to making the patient more comfortable), residents with POLST forms were less likely to receive unwanted medical interventions including hospitalizations.

“This is a tool, that data suggest works better than any other tool, to respect patients wishes and limit unwanted treatment,” notes Tolle.

In Tolle’s home state of Oregon, the POLST program has created a registry that contains a secure electronic record of a person’s POLST orders. The Registry has a 24-hour hotline that allows health care professionals treating a patient to access the patient’s  POLST orders if the paper form cannot be located. As of April 2013, nearly 130,000 forms were in the registry, representing a state-wide rate of 12% of Oregonians over the age of 65.

In Canada, Alberta and British Columbia are leading the way

Here in Canada, the Fraser Health Authority in British Columbia and the Calgary Zone of Alberta Health Services are leading the nation in developing and implementing system-wide strategies to increase advance care planning.

Since 2005, the Fraser Health Authority has had a formalized advance care planning program. In October 2012, the Fraser Health Authority Medical Advisory Committee implemented the Medical Order for Scope of Treatment (MOST) & Advance Care Planning (ACP) policy in all settings of care. This policy required that all institutions make use of a “greensleeve,” a coloured plastic pocket which is placed at the front of a patient’s chart and serves as a dedicated repository for all advance care planning documents. Additionally, the Medical Order for Scope of Treatment form (available here) was established, which functions like a POLST form by ordering and communicating current advance care planning conversations.

The 2012 Ipsos-Reid national poll highlighted the success of Fraser Health’s program. The poll revealed that compared to the general Canadian population, the population served by Fraser Health were more likely to have heard of advance care planning, and were more likely to have discussed end of life care decisions with family and healthcare providers.

In Alberta, significant progress towards comprehensive advance care planning began in 2008, when what was then the Calgary Health Region launched the “Goals of Care Designation” policy. This policy aimed to standardize the communication, documentation and processes for advance care planning and included a Goals of Care Designation Order (GCD) that functions similar to a POLST or MOST form.

In particular, the 2008 policy outlined how The Calgary Health Region would use Goals of Care Designation Orders to guide care decision-making for adult patients for interventions including transfer to an acute care facility and life support interventions. Moreover, it dictated than “an Order reflecting the Goals of Care Designation shall be documented on the health record of every Patient receiving care and treatment in a Region-owned or contracted Acute Care facility, Long Term Care facility, Designated Assisted Living (Supportive Living) and Hospice Care facility.”

Dr. Jessica Simon is a palliative care doctor and researcher at the University of Calgary who notes that the environment was optimal for the reception of this new policy.

“Calgary at the time was very fortunate in that it was a fairly integrated health system; we already had systems and structures in place such that acute care, home care, complex continuing care and long-term care facilities were less siloed then they are in the rest of the country.”

Even after the amalgamation of Alberta’s regional health authorities into Alberta Health Services later in 2008, the newly formed Calgary Zone continued to sustain the Goals of Care Designation policy.

Simon, who is a physician consultant for advance care planning for the Calgary Zone of Alberta Health Services, has now been tasked with helping to take the Goals of Care Designation policy and make it province-wide by March 2014. Simon is also the co-lead of a $2.5-million Alberta Innovates – Health Solutions grant that will support a population based knowledge translation intervention study of the province-wide expansion.

“The current climate is the start of an alliance,” notes Simon. “There is executive support and an increasing public awareness of this issue as well.”

The success of advance care planning programs in Calgary and the Fraser Health Authority helped lay the groundwork for the January 2012 launch of a National Framework for Advance Care Planning in Canada. The Framework is centred around a model involving four key inter-related activities: engagement, education, system infrastructure and continuous quality improvement.

Ontario looks to catch up

In Ontario, new Ontario Medical Association president Dr. Scott Wooder has already identified end of life care as a key priority under his leadership. Shortly after being sworn in as president, he announced plans to develop a province wide strategy for this issue.

“I don’t think we’re doing it very well,” Wooder says of advance care planning practices in Ontario. “We need a province-wide standard so that it’s not unusual to talk about advance care planning with patients when they’re healthy, but it becomes normal.”

He envisions advance care planning becoming a standard of care in Ontario. “The standard would be something that every person is exposed to while they’re healthy; it becomes part of the things we do when we look after people.”

But Wooder realizes Ontario will be hampered by its infrastructure. “We need to have a functional electronic health record where this becomes part of a core data set where it’s viewable in everybody’s circle of care.”

The need to engage patients and families

Despite the promise of recent work and legislation, comprehensive advance care planning in Canada cannot succeed unless health care professionals actually engage and listen to patients and their families.

A recent audit of advance care planning practices in 12 acute care Canadian hospitals revealed disappointing deficits in communication between patients and families and their health care professionals. The ACCEPT study enrolled 278 elderly patients and 225 family members across hospitals in British Columbia, Alberta, Ontario and Quebec and conducted in-person interviews and reviewed medical charts to investigate advance care planning practices.

The study reported that 76% of patients had thought about their wishes for end of life care, and almost half of the patients had completed an advance care plan prior to admission to the hospital. Interestingly, these numbers are substantially higher than the Ipsos-Reid national poll numbers, however, patients were only included in the ACCEPT study if they were elderly and at high risk of dying in the next 6 months.

Of patients who had discussed their wishes, only 1 out of 3 people had done so with their family doctor before hospitalization, and 55% with any member of the health care team during their current admission to hospital.

These deficits in communication resulted in nearly 70% of patients’ end of life care preferences being either not documented at all or documented incorrectly in the medical record. Most disturbing was the fact that although 28% of patients stated a preference for “comfort care,” this was documented in only 4% of their charts.

The ACCEPT study was led by Dr. Daren Heyland, a critical care doctor at Queens University and the director of Canadian Researchers at the End of Life Network (CARENET). Heyland blames the failure on the lack of engagement by health care professionals.

“Patients are primed—they’ve thought about it, they could articulate a preference, they’ve talked to their family, and no one has talked to them,” notes Heyland. “If it were that important why weren’t they being asked?”

Heyland highlights how these findings inspired the Just Ask campaign to help health care professionals talk to patients and their families about advance care planning. This initiative is part of the larger Speak Up campaign developed by the Canadian Hospice Palliative Care Association to encourage the public to engage in advance care planning discussions with health care professionals.

Our collective responsibility

So whose responsibility is it in the health care system to initiate and pursue advance care planning conversations?

Dr. Jocelyn Charles, the chief of family medicine at Sunnybrook Health Sciences Centre and the medical director of its associated Veterans Centre feels that family doctors are optimally placed to start these conversations.

“We should certainly be the ones that trigger the discussion if the person is willing to have that discussion,” she notes.

Dr. Daren Heyland agrees. “It absolutely should start in primary care, a primary care doctor should open the dialogue about the final stages of life.” But he also recognizes that an appropriate time to renew planning could be during specialist consultation or discharge from hospital. “It’s really a continuum, an iterative continuum,” he notes.

But Charles also notes that people outside of the health care professions including government and lawyers can help as well. Dr. Jessica Simon concurs. “It’s everybody’s responsibility,” she notes. “We need administrators to provide the infrastructure and system for the communication of wishes or preferences coming out of advance care planning conversations and treatment orders. There’s a public responsibility as an adult to have these conversations to help ourselves and our families and our loved ones. And then there’s the responsibility of health care providers to encourage and initiate these conversations.” She notes “it really is a group activity.”

Have you or a loved one ever talked about advance care planning with a health care professional?

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13 comments

  1. Gail Simpson

    My mother died of bladder/kidney cancer and was in control of her life to the very end. She opted for comfort as any treatment wouldn’t improve her life.

  2. Linda Murphy

    I am very, very glad to see increased efforts on a topic which many people avoid until it is very challenging to discuss.

    My sister and I have joint Powers of Attorney for my parents but my sister lives remotely and needed reassurance about my parents’ wishes for end-of-life decisions. As my parents suffer from two forms of dementia, we were very fortunate to have a superb geriatric psychiatrist assigned to my parents who was willing to lead this discussion for our family before the progression of disease made this impossible. Her sensitive manner helped this to be a positive and loving conversation for all of us and the outcomes of this discussion have already guided us in decisions.

    However, it is clear that Ontario needs more leadership to ensure that this type of support is available to all (not just at the instigation of a family member) and that agreement is needed on the type of document that will be recognized and accepted by the many players involved in implementing the advance planning directives across the acute and commuity settings.

  3. Kathy Kastner

    This is such an (increasingly) important topic to discuss, and discuss again.
    As a lay-person, interested in making my own end of life plans, I was confounded by how much I didn’t know: about decisions – how to make them, and consequences of those decisions.
    Figuring I’m not the only non-healthcare professional feeling unable to give ‘informed consent’ I developed http://www.BestEndings.com (which led to a TEDtalk)
    It’s not just infrastructure that needs updating, rebalancing, changing to meet the needs: we, the masses, need the benefit of plain language and context to make decisions that help not only ourselves, but those assigned to make decisions for us

  4. Debra Quigley

    I believe a person has choices all of their lives we should also have choices at the end of our lives.
    I support quality of life not quanity would not want to be kept alive by a machine. I support hospice and good palliative care. Do think that people should talk to their health care professional about there advance care plan. We all have differant beliefs and faiths which should be respected at the end of our lives. This can only be obtained by having things set up in place so your choices are yours not a team of professionals. Just my opionion!Like the idea of advance care planning we never know if we will have a tomorrow it is not promised.

    • Sharon Wilton, Project Share

      Debra…. there is an underbelly to this aptly described here:

      I am concerned that signing a ” legal document” as a preplanned event opens the door for two great errors:

      1. the development of a Canadian version of the Liverpool Pathway

      http://en.wikipedia.org/wiki/Liverpool_Care_Pathway_for_the_Dying_Patient

      ( be sure to read it and be horrified at the news releases related to it)

      2. the patient to be the decisionmaker about their own life and unable to reverse the “enforceable system of contracts” in the preplanning event with related consents

  5. Robert Bear

    Politicians, health system administrators and providers often reference their commitment to ‘patient-centred care’. The manner in which advance care planning is undertaken in their various jurisdictions is a window into the meaningfulness of this commitment. This is particularly true for populations of patients suffering from a serious chronic disease, such as end-stage renal disease. The annual mortality rate in this population is 15-20%, yet the medical literature confirms that the advance care planning offered these patients and their families is typically far less than ideal. I suspect this also applies to other chronic disease populations. The above-referenced initiatives notwithstanding, an important societal question to ask and answer: Why does this continue to be the case?

  6. Paul Gallant

    Certainly a crucial topic. Unfortunately still taboo by many and needing to be addressed sooner than later. My experience in this area includes the recent death of my loving mother, death of another close relative this week, direct patient/family caregiving as a clinician, interviewing/focus group and surveying many stakeholders on the topic of end of life. The common denominator in my lived plus professional experience is a “greater need for increased communication” and “understanding” including a need for dinner table conversations.

    Sometimes a barrier also exists within some doctors and health care professions. Many state they/”we” are never taught how to help families and people talk about end of life, as “we” become so focused on life and giving hope of life, almost at all costs. Some of us sometimes do not see the value in helping others accept end of life and the least stressful approach towards it…Communication. Each of us needs to help move this conversation and discussion forward now. Their are certainly some excellent resources and discussion forums available such as Canadian Virtual Hospice to get us started (I declare no affiliation). Thank you so much for your posting.

  7. Gisele Microys

    Thank you for your comprehensive article above.
    My brother, age 77, died 2 years ago. He had very specific advance care directives and with my Power of Attorney for personal care it was very straight forward to assist him in his final days with giving him comfort and dignity. The medical team respected his wishes and he died peacefully. It did help that I am in the medical profession (retired M.D.) He had also prepaid his funeral which facilitated matters greatly as he died in Alberta and I live in Ontario.
    I cannot stress enough that everyone, at least everyone over 50, should think about end of life issues and discuss these with family members. This includes making a will, having the proper POA’s, having advance care directives and letting go of the irrational fear that when you do these things the grim reaper will enter you life.

  8. Judith A. Wahl, Advocacy Centre for the Eldelry

    I am very surprised by this article in that what is missing is ANY discussion about the law on health consent. Health consent is the requirement for health professionals to get an INFORMED consent from a patient, or the patients substitute decision maker, before treatment is given. This is the common law across Canada and is also imbedded in the Ontario Health Care Consent Act. Health consent does require health professionals to talk to patients or their SDM when appropriate to get an informed consent before any treatment. This also should involve CARE PLANNING which is planning in context of a patient’s present health condition — Not Advance care planning which is planning out of context. and speculating about future health conditions. In my experience at the Advocacy Centre for the Elderly this ( consent) is not always done, particularly with people that are older or at end of life.

    Does “advance care planning” address this deficit of discussion about care and treatment? No. First of all what is advance care planning is very misunderstood. I think this article reflects this confusion what is care planning with advance care planning and does not reflect an understanding of the role of advance care planning.

    In law, in Ontario advance care planning is the process of making a decision while still mentally capable about whom will be your substitute decision maker if you as the patient should become mentally incapable to provide consent or refusal of consent to treatments in the future. So in Ontario that means either confirming that you are happy as to who will be your automatic SDM by law — which is the person highest ranking in the hierarchy of SDMs in the Health Care Consent Act – OR by creating a POA personal care to name someone to act as your SDM. Particularly if you don’t like whom the default person would be under the legislation. That’s the only DECISION that can be done in advance care planning. Other than that, a patient can only express WISHES, not DECISIONS, about future care. These wishes are directions to the patients SDM to interpret and apply if and when the SDM is required to be the decision maker if the patient becomes incapable. The SDM is required to follow the wishes when making treatment decision BUT it’s the SDM that interprets and determines if the particular wishes apply to the treatment decision that the health professional is asking the SDM to make on behalf of the incapable patient. Health professionals should NOT be taking direction from advance wishes because the advance wishes SPEAK TO THE SDM NOT the health professional. Wishes are by nature out of context and the law in Ontario reflects that the patient if capable or the SDM if the patient is incapable is entitled to get all the information at the TIME a decision needs to be made so that they can put the information about the pastimes present condition and treatment options in proper context . It is impossible to truly plan for every detail about future care because one never knows what will happen to yourself and what state of health you will be. Treatment options also change as science advances so it would be incredibly unfair and foolish to have systems or a law that would lock in patients into a plan created out of context.

    What we have observed is that this MISUNDERSTANDING about advance care planning and the effect of , in particular, written documents expressing general wishes about future care is that health professionals are taking direction from a document NOT a person and that is fundamentally wrong in law and very unfair. We see tick box forms being used to try to bind patients who are told that they can’t get admitted into a particular health facility unless they sign the tick box form, or the tick boxes being used to ignore SDMs and so forth. WE have observed health professionals determining wrongly that a patient who only wants “comfort care” has , by the tick box, decided to have NO TREATMENT – But that was NOT what the patient actually wanted when he broke his hip or needed treatment for a bed sore!

    Saying all this I do STRONGLY support encouraging people to have discussions with their family and friends and health professionals about future care. I do think that’s part of health consent — care planning in context of the patient’s present health condition and what might be treatments into the future as the patient’s condition changes. I do think that’s part of the patient doing also advance care planning which is the communication to guide and prepare the future SDM to be able to feel confidant about how to decide for the patient if that time comes when the SDM must so act. The patient should be encouraged to confirm who would be their SDM as well as talk with that SDM about not only treatments, but also their values, beliefs, what they think is quality of life and so forth.

    But THIS advance care planning is not the tick box forms we see everywhere. Its not the requests in hospital forms as to whether the patient has an “advance directive” , That’s in fact a misunderstanding of the Ontario law as the questions should be “who is your future SDM ” and “have you talked with your SDM about wishes about future care”. It should be noted that a patient in Ontario can express wishes orally and not just in writing yet almost all the hospital and facility forms I see ask if the patient has a written directive. That’s a clear misunderstanding of the law.

    I have researched what they do in BC and Alberta and I would submit that the people who think that they are ahead should ask whether the approaches being taken there COMPLY WITH THE LAW ON CONSENT in those provinces. Those using tick box forms in Ontario should look closely as to how these are being used and whether the practice reflects the Ontario law and whether the health professionals and facilities who use the forms and don’t get an informed consent from a live person (patient if capable, SDM if patient incapable) are complying with standards of professional conduct as well as the law.

    The Advocacy Centre for the Elderly is engaging in an education campaign on these issues for both the public and health professionals. Anyone interested in this may contact me at wahlj@lao.on.ca

  9. Rolande Parrel, Ph.D.

    This morning I was presented with this document at the Sheldon Chumir Family Practice Teaching Clinic – I was told everyone over 75 had to make a choice from the list. I was rather taken aback since I was under this impression this document was only for clients resident in long care facilities.
    It had to be signed by my assigned family physician. Does this mean the family physician could countermand my choice if he/she disagreed with it? Since when has it been required in family practices? What is the rationale for this?

    • Karen Born

      Thanks for your comment Rolande. We are not familiar with the document that you are referring to, but it is good practice for primary care providers, like your family doctor, to talk about end of life care when you are well. Talking about advanced care plans for the end of life should be discussed with all adults, not just those in long-term care.

      This can include conversations and reviewing documents about advanced care planning.

      Alberta Health Services provides some helpful resources around advanced care planning here: http://www.albertahealthservices.ca/3917.asp

  10. Erin

    Hi Gisele,

    I am very sorry to hear of the loss of your brother. From the sounds of your comment you were close to your brother. Close enough to be his POA. I have met you and I know what a wonderful person you really are. I have taken advice from you in the past and sometimes I still think of your words of advice. Your brother was very lucky to have such a strong woman there in his final days. I hope to see you again one day.
    Take care of yourself and Helmut.
    Erin.

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