It happens all too often. An elderly person gets critically ill in one of our hospitals or nursing homes, and panic and confusion reigns. As a physician and as a family member, I have seen this occur…I think we all have. How aggressive should treatment be, do we operate or not, is artificial resuscitation warranted, what would the patient really want; these and other questions cast doubt on the course of action, at best leading to uncertainty and at worst, leading to family discord, expensive over-treatment, and loss of “death with dignity”.
As a society, this week we have a coordinated effort to address this issue. April 16th is National Advance Care Planning Day “a day for you and others to reflect on decisions made at the end of life “. “This is a day to begin a conversation with a loved one about their wishes for end of life care – or it might remind you to review your own plan.”(1)
The facts are concerning. A recent Ipsos-Reid poll of 1,000 Canadians revealed that 86% of Canadians have not heard of advance care planning, less than half have had a discussion with a family member or friend about healthcare treatments if they were ill and unable to communicate, only 9% had ever spoken to a healthcare provider about their wishes for care and over 80% of Canadians do not have a written plan. (personal communication from Dr. D. Heyland).
One of Queen’s best research scientists, Dr. Daren Heyland, is an authority in this field.
In a 2008 study, Heyland and colleagues demonstrated that having a conversation about prognosis and end of life care is associated with better satisfaction with end of life care.(2) In one of Dr. Heyland’s blogs, he captures the essence of the issue, “You can’t predict how and when you’ll die – but you can document how you would prefer to be treated. Creating an advance care plan can help you document and share your wishes with others so that they can speak for you when you cannot. The plan doesn’t have to be complex – but it should outline your values and beliefs about end of life care and indicate how you would prefer to be treated.”
And a recent CIHR funded study by Dr. Heyland showed that only 20% of elderly hospitalized patients truly understood their prognosis (personal communication from Dr. D. Heyland). Gabrielle Tieman, in an article for Postmedia News(4) quotes Dr. Heyland
“One hundred per cent of elderly Canadians should formally designate a power of attorney,” said Heyland. “Everyone should have a person who can articulate your wishes when you no longer can — especially when you may frequent emergency rooms and not have the same doctor each time.”(4)
This is a serious issue, with many ramifications. Indeed, it has resulted in extreme controversy and even conflict. There is currently a case heading to the Supreme Court of Canada over the issue of the ability of a health care team to discontinue aggressive treatment in a circumstance that, in their best judgement, they feel is hopeless. (5) The controversy is that in this case, the family disagrees. The terrible circumstance may well have been averted with the knowledge of the patient’s desires, through a process of advanced directive.
They say that there are two certainties in life, death and taxes. In April, you will be paying attention to your taxes. So why not, on April 16th, start a conversation with your mother or father, or your son or daughter. Or take action on our own. Make sure that you as a patient, or you as a loved one, are not ever in a situation where you are not sure of exactly what to do in the situation of a critical illness. And as we get older, and the likelihood of illness gets greater, that conversation becomes all the more important. Being clear about one’s wishes in these circumstances by creating advanced directives, will help everyone do a better job in addressing your needs in a difficult situation; it will help your family, your friends and loved ones, and your health care providers.
If you want to learn about this issue, visit www.advancecareplanning.ca, if you want to speak up on this issue, leave a comment on this blog, or better yet… please stop by the Macklem House, my door is always open.
2. Heyland, DK, Allan DE, Rocker G, Dodek P, Pichora D, Gafni A. Discussing prognosis with patients and their families near the end of life. Impact on satisfaction with end of life care. Open Medicine 2009, 3(20: 71-80)
Death: Why don’t we talk about it?
Blog by Daren Heyland
4. Few Canadians plan for life’s final days: Poll
By Gabrielle Tieman, Postmedia News
5. Rasouli v. Sunnybrook Hospital: a case about end-of-life decision making
Posted by By Lonny J. Rosen, C.S., Rosen Sunshine LLP on Mar 13, 2012