Advance care planning – we’re paying attention now
Today (April 16) is National Advance Care Planning Day, an annual event to raise awareness about detailing what kind of care you wish at the end of life and to confirm a future substitute decision-maker who can communicate your wishes and beliefs about future health care, and make decisions when you are no longer mentally capable of doing so. In this conversation, Lee Fairclough, VP for Quality Improvement at Health Quality Ontario, and Kathy Kastner, a long-standing advocate and coach for appropriate end-of-life care and planning, discuss this issue.
Lee Fairclough: In the last few years, we have seen many campaigns in Ontario and across Canada raising awareness about advance care planning. These campaigns are having an impact. Findings from the 2017 Commonwealth Fund International Health Planning Survey of Older Adults showed more senior Ontarians have had discussions relating to issues of advance care planning and substitute decision making than almost any other country or jurisdiction in Canada. That study found that:
• 70% of older Ontarians report having a discussion with family, a close friend or a health care professional about what health care treatment they would want or not want if they became very ill or injured and could not make decisions for themselves
• 47% of older Ontarians report having a written plan or document describing the health care treatment they would want or not want at the end of their life
• 70% of older Ontarians report having a written document that names someone to make treatment decisions for them if they cannot make decisions for themselves
As a society, we are thinking more about dying and end-of-life care as well as earlier and more effective palliative care.
Kathy Kastner: “My mom died in 1982. The cause of death was pneumonia, after surgery and radiation for a brain tumour. She’d made clear: ‘I want you to do everything possible to keep me alive.’ Thinking back, I didn’t even know what I didn’t know. Much less what to ask.” I wrote those words in an article six years ago and I attended a Canadian Medical Association townhall meeting two years later when our poor general knowledge about advance care planning was repeatedly expressed. My sense is more people are now starting to think about this.
Lee Fairclough: Why is advance care planning so important? Well, it’s a time for you to reflect on your values and wishes, and to let others know what kind of health and personal care you would want in the future if you become incapable of consenting to or refusing treatment or other care. There is also evidence that patients who have advanced care plans are more likely to have their end-of-life wishes known and respected. This means having a greater potential to die at home if you wish to do so, or have your wishes complied with if you do or do not want certain interventions such as cardiopulmonary resuscitation (CPR) in hospital.
Kathy Kastner: While CPR or do-not-resuscitate (DNR) orders seem to be the most talked-about decision points in advance-care-planning conversations (since this is rarely accomplished in just one talk), they are opportunities to explore hopes, expectations, and realities. For example, addressing the seeming contradiction, ‘I want to die at home/I don’t want to be a burden’ can lead to a better understanding of the complexities of making these ‘future’ decisions.
Lee Fairclough: Several organizations remain active in the province in raising awareness about this issue: Hospice Palliative Care Ontario provides educational resources and tools on advance care planning in the province. This association also leads the Ontario chapter of the Speak Up About Advance Care Planning National Campaign. As well, Health Quality Ontario and the Ontario Palliative Care Network have developed a palliative care quality standard and patient guide that outlines best practices for quality palliative care and can help patients ask their health care providers informed questions. The quality standard includes information about advance care planning and substitute decision-makers. We are increasingly seeing providers across different care settings promoting this practice as part of their improvement work.
Kathy Kastner: What’s also important when choosing your future substitute decision-maker is to ensure that the person is willing to take on the role, is comfortable with your wishes, and is willing to advocate for your wishes
Lee Fairclough: The theme for this year’s advance care planning day is making sure your substitute decision maker knows your values and wishes. As the campaign states: “The space between guessing and knowing can be closed with a conversation”. This point was also emphasized by Dr. Allan Grill, Chief of Family Medicine at Markham Stouffville Hospital. In a recent webinar given on behalf of the College of Family Physicians of Canada focusing on 10 take-home points for advance care planning in family medicine, he said patients should be encouraged to talk to their substitute decision maker about their wishes, values and beliefs with regard to future medical care.
Kathy Kastner: In his webinar, Dr. Grill raises a key issue we patients/families often face in advance care planning conversations: namely that we often don’t know what questions to consider that might influence healthcare decision making. The more I learn, the more I realize why it’s impossible for real people to effectively heed the constant cry I hear from dedicated health care professionals: “If only people talked about it more, so much grief could be avoided.” The thing is, we don’t know enough to know where to start, what to ask and what to consider. Not one other “real person” I have spoken to knew how much they didn’t know. However, as Dr. Grill noted, there have now been conversation guides developed to help in this regard.
Lee Fairclough: The bottom line is that regardless of the way advance care directives are structured, having them in place, and accessible and shared with everyone who matters are an important measure for insuring you receive the type of care you want if and when you are not capable of speaking up for yourself. They can also be the foundation for effective palliative care, if it’s available.