Three Big Reasons to Talk Now About Dying

[written by guest blogger Ann-Marie Gilbert]

3 Big Reasons to Talk Now About Dying

A few weeks ago the CBC dedicated an hour of their news show “The Current” to talking about end of life care. On the heels of the news coverage surrounding Brittany Maynard’s right to die, it seems appropriate to talk about death, dying, quality of life and dying with dignity. Are Canadians talking about their preferences for death and dying?  Dr. John You1  tells us that when Canadians are asked about their preferences, they generally prefer a care plan that does not include medical interventions.

“We actually went straight to pretty sick patients in Canadian hospitals as well as their family members and we asked them directly what their preferences would be for the kind of treatment they might want if they were to become really sick to the point of being life threatening. What they told us was they generally preferred a care plan that didn’t include resuscitation and other heroic measures and the majority wanted care that was focused on quality of life and comfort.” Dr. John You.

If you are one of those people that doesn’t want interventions, then this is the first reason for talking about your preferences.

Many of us will die after years of slow decline. What if you can no longer speak for yourself? That’s the second big reason.

Fortunately for Canadians there is The Speak Up Campaign from CHPCA. It provides a downloadable workbook to guide people through decision making for their own care at end of life care, death and dying. It encourages people to discuss these decisions and document their preferences, because there may come a time when we can no longer speak on our own behalf.

I’ll tell you a story of the Speak Up Workbook. My family and I used these resources a little over a year ago at Thanksgiving. We sat in a sunny dining room after breakfast, with our coffee cup and worked through the questions. Each of us wrote in our own workbook. We talked about our preferences for care, for Alternate Decision Makers and Advance Care Plans. Even funeral planning. Because no one was imminently dying the conversation was sort-of easy – it was hypothetical, calm, sometimes absurd and sometimes comical. I thought that was ok though, because these were tough topics to talk about, especially with your parents.

I was surprised by some of the answers others talked about. Whew it was a good thing we had talked together because there wasn’t any way I would have anticipated some of their choices!

It is now a year and a few months since we completed the Speak Up workbook together. Declining health in my parents prevents us from having this type of meaningful conversation now. That’s the third big reason to talk now about dying. I find comfort in knowing there is an Advance Care Plan in place to guide decision making. We know what they want.

If you are with family this holiday season or in the new year, consider taking time to talk about your preferences for death and dying with each other. Have a look at the Speak Up Workbook. Consider planning time to discuss it and work on it together.

It will be a priceless gift for you and for your family.

 

1 Associate Professor at McMaster University’s Michael G. DeGroote School of Medicine

Medically assisted dying? First ensure universal access to Hospice Palliative Care

Last June the B.C. Supreme Court struck down Canada’s ban on assisted suicide. The federal government launched an appeal. Yesterday Bill 52 was tabled in the Quebec National Assembly to legalize medically assisted dying.

This bill would allow a physician who receive the repeated consent of a patient to administer medication with the specific purpose of causing death. This is different than the laws in four US states where the physician writes an order the the patient fills the prescription and takes the medication themselves.

I support the Canadian Hospice Palliative Care Association and the Canadian Society of Palliative Care Physicians (CSPCP) as they stress “the need to  ensure that all Canadians have access to Hospice and Palliative Care before legalizing assisted dying.

This is the most important message to share with neighbours, friends, politicians, health care team members. For more information, clarification, definitions, go to “Let’s Talk About Hospice Palliative Care First” campaign at: www.chpca.net/hpcfirst

Planning for dying while living in the moment

“Recent survey reveals Australians simply aren’t having conversations about death and dying and are therefore flying blind when it comes to understanding the end of life wishes of their loved ones….Discussions about the type of care we want, and where we want to be cared for are important for every single one of us. The fact is palliative care is everyone’s business.” – Dr Yvonne Luxford

Australians are not alone in not talking about dying.  In Canada the CHPCA “Speak Up” website and campaign provides resources to assist individuals, families, and professionals to start conversations on the topic.

In British Columbia the Ministry of Health published a resource, “My Voice: Expressing My Wishes for Future Health Care Treatment”.  This is a practical tool  that I have found useful to help guide conversation.

From a personal perspective, when my mom Yetta was diagnosed with a terminal cancer she talked about dying like she talked about everything else – openly, with curiosity, and in very practical terms.  Dialogue started in the early mornings over her first cup of coffee and popped up throughout the days.

Initially, other than deciding on cremation and a few details about a service, she focused mostly on the care that she wanted before death. When my siblings found a beautiful piece of driftwood and started to build a coffin for her, she became more interested in that topic as well.

Yetta talking over early morning coffee "What is important to me when I die...."

Yetta talking over early morning coffee "What is important to me when I die...." (Photo by Barbara Lees - used with permission)

I continue to learn and be inspired by those who manage to hold living and dying simultaneously in dialogue and planning.

I am touched by the grace, humour, and skill individuals show when they balance planning for dying with planning for living, and still live in the moment.  I think of individuals who have talked about dying while preparing to graduate, marry, grow up, celebrate holidays, gather with loved ones.

Mom…. “My preference is to die at home,…. I don’t want to inconvenience anyone… Remember to CARE FOR THE CAREGIVER…. What should we eat for Christmas dinner? Who has the shopping list?”

(For more about Barb the family photographer.)

 

 

The power of information sharing to support informed decision making!

The CHPCA Model to Guide Care outlines the “Process of Providing Care”.  Unlike the Nursing Process (assess, plan, implement and evaluate) that I learned as a young nursing student, the CHPCA model identifies

  • ASSESSMENT
  • INFORMATION SHARING
  • DECISION MAKING then
  • CARE PLANNING
  • CARE IMPLEMENTATION and finally
  • CONFIRMATION (evaluation)

I am struck by the simplicity of this process, and wonder how we missed this for so many decades!

How do we expect to plan care if the client and the family do not have sufficient information, and if we do not then support client and family with informed decision making.

This article in the Globe and Mail March 2012, reports on a study done in Nova Scotia.  200 frail elderly who were scheduled for tests or procedures were assessed and then given information about the possible effects of their treatment.  After receiving the information  76 % opted NOT to have the procedure done.

“In this particular program, patients who were an average age of 81 were booked for open heart surgery, heart-valve replacements and, in one case, a series of three operations to repair an aorta. Others were to undergo chemotherapy for cancer and dialysis for kidney failure. Some faced investigations for a suspicious mass, exploratory procedures for cancer or tests that necessitated a hospital admission.

Only those who meet the definition of frail and elderly – having accumulated multiple chronic health issues over time – are eligible for the program, which involves getting a detailed history and assessing both cognitive function and caregiver support available at home.

Half of the participants were slated to undergo a medical test, procedure or operation, while the other half were referred based on their health status and the need to make future decisions. “People tend to want less aggressive interventions when they have all the information on the table,” Dr. Moorhouse said.

What patients learn is that while they may survive the operation, test or procedure, they may lose function or mobility, prompting them instead to opt for more conservative management of their ailment, such as medication.” According to Dr Moorhouse

Retrieved http://www.theglobeandmail.com/life/health-and-fitness/assessing-the-risk-benefit-of-invasive-medical-procedures/article534850/