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Avoiding turmoil when dying

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.

Richard

1. www.advancecareplanning.ca

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)

3. http://www.thecarenet.ca/index.php?option=com_content&view=section&layout=blog&id=5&Itemid=54
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
http://www.ottawacitizen.com/life/Canadians+plan+life+final+days+Poll/6412036/story.html

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

8 Responses to Avoiding turmoil when dying

  1. Stephen Singh says:

    Dear Dean Reznick,

    Thank you for that wonderful post drawing attention to National Advance Care Planning Day. As one of the Palliative Medicine fellows at KGH, I’m often involved in discussions with families and attending teams about patients’ goals of care. Too often, families have not had prior discussions with loved ones about their wishes. In addition, much of the time, a clear Power of Attorney for Personal Care has not been established, which makes decision-making difficult.

    I do see that people’s awareness of these issues is improving, but there is still a great societal stigma (as well as one in the medical profession!) to speak about and plan around someone’s death.

    Stephen Singh MD CCFP
    PGY-3 Palliative Care
    Queen’s University

    • reznickr says:

      Dear Stephen,

      Thanks for your comment and it is so important coming from someone working in the palliative care field. You are so correct in saying we have to de-stigmatize conversation on this topic.

      Richard

  2. Lawrence Leung says:

    6 residents from our Department of Family Medicine(DFM) just finished an audit of medical records which reviewed that only 1% of patients had some form of End of Life(EoL) Discussion ever. They also surveyed 100 primary care providers of our DFM and identified some perceived barriers to conduct EoL discussions amongst patients in primary care, and suggested means to promote EoL discussions in routine care of our patients. I think this area of EoL discussion is something we should start talking and improving.

  3. Phyllis Durnford says:

    As a nurse and as a adult who tried to have this conversation with her aging parent, I found preparing for that conversation difficult-and nurses are supposed to know how to do this. My parent surprised me by telling me she’d already done the power of attorney necessary if she became incapable, and she also told me basically what care she expected at the end of her life. Utimately because of Alzheimers, she did become incapable, and because of her foresight, it was easier (?) to assume her care than might otherwise have been the case.

    My point in saying this is that from both my professional and personal experience, the resource that’s needed is the person who can guide/facilitate/mentor people in how to open that conversation, and how to ‘listen’ to each other. The resource doesn’t have to be a health professional, but that side of the experience helps. The resource person/people need also to be available to facility staff, to assist them in fostering the opportunity to have that conversation directly with their patients/residents and their families, and to promote it between the families and patients/residents.

    For an adult to start this conversation is to admit the mortality of their parent/themselves/their child. This admission is one of the hardest things to do, but without it, the rest of the conversation likely won’t happen. The fallout is the turmoil to which you refer. The letter ‘S’ comes before ‘T’ in the alphabet, so let’s Start the conversation so we don’t get to Turmoil.

    • reznickr says:

      Dear Phyllis

      Thank you for sharing your experiences and your perspective. I am sure that you are right hat eh hardest part is to initiate he conversation. But once started, it benefits the individual, his or her loved ones, and the health cre system

      Richard

  4. Murray M Fraser, FRCSC says:

    Your recent blog is certainly something that can be talked about with benefit to all parties. I am speaking from the aged’ side as I am now in my ninetieth year and my wife is not too far behind. We are extremely fortunate as we still live in our own two story house that we purchased as original occupants fifty-two years ago. We both drive our own cars when necessary and do our own business.I am looking forward to another season of golf even though I will be using the cart a lot more than previously. However we have appointed someone to have power of attorney and we do have an advanced directive all legally witnessed and signed by a lawyer.
    0n the other hand we also realize that treatments change and risks vary. The best example is the fractured hip, which in my student days was the “Kiss of Death” for those who suffered the injury. I have practiced Surgery both adult and paediatric for all my specialist career but settled on the paediatric for the last 20 years before I retired. The second childhood is well named but sometimes it is the younger children who are the ones who are afraid to face reality.

    • reznickr says:

      Dear Dr. Fraser,

      Thanks so much for responding the the blog. It is terrific to hear that you and your wife are doing well. I am glad to hear you agree with the movement to get more people aware of signing an advanced directive.
      As they say, hit them straight and hit them long!

      Richard

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Dean Richard Reznick
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