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Advance care planning: a difficult conversation


Advance care planning is an important process by which people think about how they would like to be cared for if they are seriously ill. 

While most Canadians agree that having conversations about advance care planning are important, fewer than half actually do.

In some jurisdictions, advance care planning is done much better than it is in Ontario.

The case of Hassan Rasouli, who has been a patient at Sunnybrook Health Sciences Centre since October 2010 has made headlines repeatedly as his family and doctors engage in an ongoing legal battle over whether Rasouli should be removed from life support.

Fortunately, cases like Rasouli’s, where doctors and families take their disagreements to court, are very rare. But it is very common for patients to be admitted to hospital without having ever had discussions about how they would like to be cared for if they become seriously ill.

A March 2012 Ipsos-Reid poll found that less than half of Canadians have had a discussion about their end of life care wishes with their family members and only 9% had ever spoken with their health care provider about this issue.

When asked, most Canadians state that they wish to die at home in the presence of their loved ones. Despite this preference, about 70% of deaths in Canada take place in hospitals. While this may in part be related to a lack of availability of community-based palliative care resources, another reason may be that many people who are near the end of their life have never discussed with their doctor or their family member what kind of care they want when they become seriously ill.

A Canadian study of hospitalized patients with six months or less to live released interim results last month and found that more discussions about end of life are needed between health care providers, patients and their caregivers.  The study found only about 20% of patients had been informed about their prognosis, and only 44% about what the goals were for their current treatment.

Daren Heyland, a professor at Queen’s University and intensive care physician who led the study says, “there is a need to normalize this conversation and create a conversation about what the end looks like, think about it and prepare for it.” With more Canadians dying from chronic diseases, these conversations are increasingly important.

Advance care planning is a term used to describe what takes place when someone thinks about how they want to be cared for if they become seriously ill and then shares these thoughts with their doctor and family member. Elizabeth Sloss, a health lawyer in Toronto notes that an advance care plan “is not a specifically enforceable legal document” and is intended to help guide substitute decision makers and doctors in the event that a patient cannot express his or her wishes during a serious illness. Reflecting in such a manner leads many patients to conclude that they only want to continue on life support if there is a reasonable chance they will become independent again. Others decide that they want life support even if the chances they will ever leave hospital are very low.

Heyland says “poorly done, or not done at all, decisions at the end of life result in an intensification of care”. Intensification of care at the end of life – such as resuscitation when the heart stops, for example – may not be beneficial and may actually cause harm to the patient and their family.

Research has shown that advance care planning results in patients being more satisfied with their health care overall. Patients who plan in advance typically receive fewer interventions at the end of life, placing less strain on caregivers and health care system resources.

The Hospice Palliative Care Association has developed a website, advancecareplanning.ca, to provide information, tools and resources to support advance care planning. For example, the website provides templates that patients can use to produce their own advance care plans, and tips to start the conversation with their doctor.

However, having a web site is not enough. In Ontario there is no system-wide strategy for ensuring that advance care planning conversations take place. John You, a hospital general internist and researcher at McMaster University says “the accountability to have these discussions with patients and their families is too spread out across multiple health care providers … everyone feels that it should be someone else’s job, so very few actually do it.”

Heyland says that “where system-level resources have been deployed to drive advance care planning forward and there are higher completion rates of advance care directives, more of the deaths are occurring under conditions that patients want.”  One place this has happened is in La Crosse, Wisconsin. In all health care organizations in La Crosse, patients have access to trained facilitators, who meet with patients for an hour or more to discuss advance care planning.  In La Crosse, advance care plans are documented in the electronic health record in a standardized manner. Studies have shown that between 67% and 85% of people who die in La Crosse have expressed their wishes explicitly, in advance.

Would a similar investment in Ontario make sense?

If it were appropriate in your circumstances, would you feel comfortable having discussions about advance care planning with your doctor?

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3 comments

  1. Linda Murphy

    My parents and I are very lucky to have a geriatric psychiatrist working with us and she was willing to help lead this discussion for our family – and did so in a very sensitive and considerate fashion.

    I think your article would benefit from an expansion to consider this issue from more than the perspective of persons in a palliative care situtation. The issues for persons with dementia in its various forms is also quite challenging and caregivers are also often graplping with the perspectives of family members who do not have the opportunity of ongoing interaction and conversations with those immediately affected.

    A few months ago I looked quite hard for resources on this topic (interestingly the resources you flag in your article did not surface from a lit search or mulitple conversations with persons in the health and social services systems).

    The other key challenge is to formalize these these decisions in a manner that the systems can accept and act on as facilities and providers do not have consistent policies in this regard.

  2. Barb farlow

    Thank you for this article. It is important to encourage advance care planning.

    In my view, obtaining the patients’ wishes is not the whole story. To encourage patients to declare what they want like they have a carte blanche is perhaps not realistic. It might not be fair to allow the public to believe they need only state their wishes and they can be confident that they will be respected. For that matter, perhaps it is not fair to providers either- especially the intensivists, who must deal with unrealistic patients and families all the time who believe that they need only make their wishes known and they will be respected.

    I do not have the figures in hand to quote, but I am aware that the shortage of critical care beds combined with the projected demand for them based on disease trends and demographics cannot allow for the same utilization of this resource as has existed in the past. Can we really believe that every patient who needs crtiical care services is permitted entry?

    The College of Physicians and Surgeons Decision Making at End of Life Policy permits physicians to make a unilateral decision to withdraw or withhold treatment which in their view, and perhaps according to their values, does not provide a “permanent benefit” to the patient. “Benefit” is a word that can have many meanings and can be related to values regarding disability. How long is “permanent” anyway? The College encourages physicians to obtain consent, but does not obligate them to inform the patient or family of the decision to withdraw treatment in these circumstances.

    A study in 2010 by Ratnapalan et al (ON) revealed that documentation related to end of life care in the ICU for an elderly cohort was sorely deficient. I wonder if the families of the patients in that study were interviewed if it would reveal that informed consent leading to death truly always existed.

    While many in the public believe that “futile care” means care that has no effect, the ON ICU community has a different definition. A 2007 CMAJ publication, “Perceptions of “futile care” among caregivers in intensive care units” revealed that according to the ON ICU community, medically futile care includes patients for whom the use of considerable resources are needed when there is no reasonable hope that the patient would recover to a state of relative independence. What does it mean to be “relatively independent.?” Many disabled and elderly people are relatively independent. Do these patients and their families consider them to be a futile case not worthy of resources to preserve their lives? My opinion is that a clash of values must exist frequently, given the diversity of the population in our province but for a number of reasons and in a number of ways the clashed are managed such that they do not erupt into a situation such as the Rasouli case.

    My point is not to criticize providers of these services. My point is that if the goal is to provide the best end of life care and dignified death to people and to prevent disability discrimination the limitations of the care patients can choose from must be transparent. I believe that limitations must be developed though a process that is transparent and involves input from the public and representatives for the vulnerable. I also believe that a process must exist that allows for limits to be appealed for special cases.

    I think that honesty about limitations is a conversation that nobody wants to initiate. Yet, surely it is inevitable that such a discussion must begin, especially if we desire to have a public healthcare system that is based on trust and compassion and which ensures that the system with which medical providers practice allows for and insists upon ethics and integrity.

  3. Judith Wahl

    The La Crosse example is not a good example of how advance care planning should be done. in Ontario First the model they follow is not directly applciable in Ontario — law concerning consent and advance care planning is provincial or state specific so it is important to create and follow practices about consent and ACP that reflect appropriate provincial law. Second, in my opinion the La Crosse approach confuses consent ( which is the process of discussion that health practitioners are supposed to follow before delivering treatment) with advance care planning .

    The result of discussions about consent are DECISIONS about treatment whereas the discussions in ACP results in expressions of “WISHES” about POSSIBLE future treatment or expression of values about health and quality of life that can guide and direct the patient’;s substitute decision makers when making decisions ( consents) for the later incapable patient. These are two different although related processes.

    My experience with consent and ACP is that many health providers and facilities treat the advance directives as consents when in fact they should be getting consent from the patient in context of their present health condition or the patients SDM if the patient is then mentally incapable of giving or refusing consent to the treatment at that time. Advance care planning does help people to have discussions about their health condition and possible future options but it is speculative. Its a discussion about “what if..” . People ALSO need to have discussions about consent and Care planning — which relates to their PRESENT health condiiton and possible options related to theri present health condition. I think the La Crosse model data is capturing the consents into the ACP and confusing the two. If I am right then the number is not that impressive becasue it should be 100% since consent is required before treatment!!

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