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Planning For End Of Life Care When There Is No Next Of Kin

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END OF LIFE CARE
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Question: My husband and I have no children and no real close blood relatives. I worry about what's going to happen to us when our health fails. I've heard that written instructions -- like Living Wills -- aren't good enough. Who can help us if we can no longer speak for ourselves?

Answer: Your concerns are shared by a growing number of people -- especially as the size of the traditional family has become smaller in recent decades. The changing demographics mean there will be a lot more people in similar circumstances. In some respects, it's like being an orphaned senior.

And you are correct that there are shortcomings with written medical instructions, which are called Advanced Care Plans in Canada. (Living Will is a term that first arose in the United States.)

But rest assured you can appoint anyone to represent your interests through a legal document known as a Power of Attorney for Personal Care. It doesn't have to be a blood relative.

"It could be a neighbor, a friend from your faith group, or someone you have grown up with," explains Lorrie Hamilton, an ethicist at Toronto East General Hospital.

"The most important thing is finding someone who can honour your wishes."

In fact, in certain situations, people may be better off asking a friend, rather than a relative, to carry out this crucial role. "Sometimes people will find that their friends understand them more than their family does," says Ms. Hamilton.

What's more, families may be reluctant to withdraw life-sustaining therapies - even though the patient might prefer to slip away. Or, the relatives may be deeply divided over the course of your care.

So don't look upon the lack of relatives as a disadvantage. Instead, it can be an opportunity to select the person who you feel best understands you.

The process of appointing someone as your Power of Attorney for Personal Care is relatively easy. If you live in Ontario, you can download the document online from the provincial website.

You don't even need to hire a lawyer. It just needs to be witnessed by two people.

However, I don't want to leave the impression that going through these steps is like a leisurely walk in the park. You will have to engage the person you choose in some pretty deep discussions about what you would like for your care.

Fortunately, there are useful online resources. The Canadian Hospice Palliative Care Association has launched Speak Up, a national campaign to increase public awareness about end-of-life advance care planning. The Speak Up website contains a workbook and other materials to help frame your discussions.

"You want this person to understand your values, your beliefs and how you view life," says Ms. Hamilton.

She points out that some people may be fine with the idea of being bedridden and dependent on others for all their personal needs. Others may consider such an existence intolerable.

Doctors and other health professionals involved in end-of-life care say that a series of conversations is the best way to convey your wishes to the person who will be making decisions on your behalf.

"It is really hard to anticipate all your future circumstances," explains Dr. Nadia Incardona, a hospitalist and emergency department physician at Toronto East General Hospital.

If you rely solely on written instructions "you may end up providing directions that are not what you would want, " she adds.

For instance, you may stipulate that you never want a feeding tube. But just imagine a scenario in which you have an accident and require a feeding tube temporarily and you're expected to make a full recovery. In that situation, you may want your substitute decision-maker to ignore what's written down on paper.

So it's important to provide your substitute decision-maker with a broad-ranging understanding of what's important to you. Your discussions then serve as a guide for determining your care as different situations arise.

Of course, there is some value in leaving written instructions -- particularly if there really is no one who you can appoint as your Power of Attorney for Personal Care. But, as a general rule, such a document should be not considered an end in itself. (Also keep in mind that the rules governing Advance Care Plans differ across Canada. So their legal status varies from one province to the next, and caregivers may not be obliged to follow them.)

When choosing your substitute decision-maker there are a number of practical matters to consider.

"You have to ask them if they are capable of making these decisions and if they feel comfortable advocating on your behalf," say Doreen Ouellet, past chair of the Advance Care Planning Work Group at the East Toronto Health Link.

You also need to select someone who will be readily available. That means it's not a good idea to pick someone who doesn't return phone calls or goes away for prolonged periods without leaving any contact information.

Ms. Ouellet suggests you should keep the name of your substitute decision-maker in your wallet or another place where emergency responders are likely to look for identifying information should you become unconscious in public.

The Ontario government has created a wallet-sized card for this purpose. All you need to do is print it out, fill it in, and stick it your wallet.

It's also important to talk to your family doctor and other health-care providers, says Nino Sekopet, a client-support program manager with Dying with Dignity in Toronto.

"I would be very vocal in explaining my wishes to my physicians because they are going to be dealing with the treatments," he says.

I hope these suggestions provide you with some peace of mind.

The good thing is that you are thinking about these issues now. All too often people put off these discussions or never have them.

As Ms. Ouellet puts it: "People should make their wishes known while they are still able to do so."

Written by Paul Taylor, Sunnybrook's Patient Navigation Advisor.
Paul provides advice and answers questions from patients and their families, relying heavily on medical and health experts. Email your questions to AskPaul@sunnybrook.ca and follow him on Twitter @epaultaylor

Read more tips and information from Sunnybrook experts at health.sunnybrook.ca

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