Learning to ‘speak up’ about final wishes

This piece was also featured in: Waterloo Region Record
Published: Apr. 16, 2013 | [ WEB ]

WATERLOO REGION — No one enjoys talking about the prospects of their own death.

But avoiding a conversation could mean not having your wishes carried out in your final days and burdening your family with difficult decisions.

Recognizing the problems caused by being unprepared, health-care providers across the country are campaigning for people to “Speak Up” and create a care plan ahead of time.

“It is about ensuring what you want to happen, happens,” said Judy Nairn, executive director for Hospice of Waterloo Region.

Nairn said that over 80 per cent of Canadians do not have a written plan, and only nine per cent have spoken to a health-care provider about their wishes for care.

That force countless families in stressful situations to make choices about palliative care when a loved one is no longer able to voice their own wishes.

“Often what happens, then, is families get into a crisis situation where something has occurred. … At that time everyone is very emotional, everyone is very stressed, you can often get family disagreements,” Nairn said. “You get all this additional tension at a time when the family just needs to focus on what they’re going through.”

“People really struggle, they wonder and they’re worried, and that stays with them, the (question), ‘Did I make the right choice?’ ” said Christine Bigelow, a palliative pain and symptom management consultant for Wellington.

Nairn believes part of the reason that people don’t plan ahead is cultural attitudes about death and health-care advancements. “We’re a society that’s very focused on living … and we have an exceptional health-care system that can find a lot of cures, a lot of treatment options for people to delay things.”

But the reality is life-threatening accidents and illnesses do occur, and it can happen at any point in life. Nairn recommends everyone have a plan and have it documented. “You have to share these thoughts with somebody. It’s not enough to write them down, you have to have a conversation so they know what your wishes are.”

To help start the conversation and know what details to discuss, many resources are available through Hospice of Waterloo Region and online through the national Speak Up website.

One of the primary decisions that needs to be made is establishing a “substitute decision maker” — someone who will make decisions on your behalf. In Ontario, there is a hierarchy which health-care providers can look to in determining a substitute decision maker when one isn’t already designated.

In most cases, a spouse would be first in the hierarchy, but if that isn’t the ideal situation for an individual, they must have their preferred substitute in writing.

Additional decisions pertain to care, comfort and medical intervention.

Things to be determined in advance include where an individual wishes to spend their final days — at home or in a hospital — the people they want with them, and any religious or spiritual rituals they wish to have.

Medical decisions, from do-not-resuscitate orders to specific interventions like breathing or feeding tubes, should be considered as well.

“You have to think about what I value most about my mental and physical health … what would make prolonging life unacceptable for me, for example not being able to communicate with those around me or being kept alive by a machine,” said Cathy Joy, a palliative pain and symptom management consultant for Waterloo Region.

Including a family doctor in these discussions helps ensure wishes are carried out. “The doctor should know who they’ve appointed to make decisions for them … and the doctor can also give them information about the kinds of medical interventions that can happen and should know what their wishes are,” Nairn said.

Decisions are not set in stone.

An advance care plan can be easily altered to accommodate changes in marital status, the birth of a child or grandchild, the development of chronic diseases or simply a change of heart.

“Advance care planning is a process, it’s not one conversation or discussion, and you’re able to change your mind,” Bigelow said.

For the ongoing certainty it provides people and their families from removing unnecessary stresses around disease and death, Joy added, “That becomes the gift of that discussion.”

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Linda Givetash

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Linda Givetash is a Canadian-South African freelance journalist based in Vancouver, B.C. Her work has appeared in print, digital and broadcast media outlets around the globe.