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Dying on their own terms

More people making end-of-life plans so loved ones won’t agonize over decisions
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Gillian Sanderson, left, and Betsy Nuse are making decisions now about the type of care and medical intervention they want if they become too ill to make informed choices later.

Gillian Sanderson survived breast cancer, dealt with arthritis and heart fibrillation and got through a down-sizing move to a condo.

But a December car accident put the 78-year-old Victoria woman in hospital for two weeks. Her heart condition worsened, and suddenly she found herself feeling mortal and very anxious about the end of her life.

“I’m not talking about religion, I’m talking about the way we want to end our lives,” she said in an interview. “I don’t want to be a victim lying on a stretcher with people over my head making decisions about me as if I’m a dead fish.”

So, upon release from hospital, Anderson contacted Victoria Hospice. She was told what she was really looking for was advanced care planning and referred her to the Vancouver Island Health Authority.

Anderson and her partner, Betsy Nuse, attended two information sessions organized by the health authority, one of which was a round table, question-and-answer discussion.

“We were both extremely impressed with the information,” said Anderson. “It just took away a lot of the worry and anxiety that all older people feel.”

As a result, the two women are now embarking on what they were told is a good first-step in planning for the end of their lives — writing personal letters to each other discussing what they believe is important, what makes life worth living and what they hope for at the end stages of their lives.

Once the letters are written — “It’s on my to-do list,” said Anderson — the two women will make inquiries about any further, written or legal requirements, if any.

Advance care planning lays out an individual’s instructions and opinions that will direct, inform or influence medical care after a person is no longer capable of giving instructions or making decisions.

Changes to provincial legislation in 2011 simplified how individuals could give their end-of-life instructions.

But recent court decisions, like the case of Elizabeth Bentley, a 62-year-old woman living in an Abbotsford nursing home with severe dementia, seem to complicate matters. A B.C. Supreme Court justice ruled in February, Bentley was signalling her willingness to accept nourishment by opening her mouth to be spoon fed.

 

Her family was asking for the spoon feeding to stop and cited a “living will” in which Bentley objected to the notion of being kept alive through artificial means. The judge ruled people are allowed to change their minds. The case is under appeal.

Victoria lawyer Danielle Topliss, who deals with end-of-life issues, said rulings like the Bentley decision are a double-edged sword. On one hand, the implications can be frightening for people contemplating making end-of-life plans, but on the other hand, it can also be empowering since they narrow the circumstances in which end-of-life instructions can be followed.

“That’s either terrifying or exhilarating,” said Topliss.

She said a lawyer can help individuals navigate the end-of-life waters while keeping tabs on relevant court decisions. But advance care planning still remains a good idea for all adults.

“It is a singular opportunity for empowerment,” she said. “What you are doing is contingency planning in the event you can’t determine your best interest.”

Deanna Hutchings, a clinical nurse specialist in end-of-life care with the Vancouver Island Health Authority, said planning ahead gets covered by three topics: Conversation, decisions and how we care for one another.

Having the conversation can lead to the decisions that inform what kind of future care is delivered. By going through that process we can make tough times so much easier for the people we care about.

“People will agonize over doing the right thing,” said Hutchings. “They can feel very conflicted and very guilt ridden about health care decisions.”

“This [advance care planning] can be a very great gift to them,” she said.

Hutchings said writing letters, like Anderson and Nuse, is a great way to make wishes known. But advance care plans can even be recorded on cell phones or videos.

Perhaps the most important advanced care decision is to appoint a trusted friend or family member to make any end-of-life decisions.

“It can remove some real potential for conflict within families,” said Hutchings.

“Two of them will say ‘Mom would want that,’ and three are saying ‘Are you kidding?’ ”

Another step that can be taken is to write out what is known as an advance care directive and have it legally notarized.

Hutchings advises some caution with legal directives because they are explicit, binding and have little room to manoeuvre.

She said binding directives can be effective when a person has a progressively debilitating illness, such as ALS, also known as Lou Gehrig’s disease, in which paralysis gradually overcomes the entire body.

 

Someone with such a disease likely knows what will happen as their illness progresses. And that person can say “No” in advance to specific medical interventions like feeding tubes or breathing apparatus, for example. People can, however, change their minds. But until they expressly do so, any written directive is the last word.

“And we don’t really know what sort of decisions will have to be made at the end,” said Hutchings.

Despite difficulties and complications she said her experience indicates people are more and more willing to consider the topic of advanced care planning. Last year alone about 600 people came to various information sessions.

“See, we are not such death-denying society after all,” said Hutchings. “If you give people the right tools, we can take the bogeyman out of this.”

Kristy Martin, a notary public with Farley Martin Notaries, said her firm goes an extra step once a client has appointed a trusted representative to make medical decisions.

 

Martin said clients are also encouraged to write letters of instruction about what should be done. And her firm will regularly send reminders to clients to update the instructions.

“It’s great thing to appoint somebody, but tell them what to do,” she said. “Don’t just leave them with nothing.”

Martin said her clients are often frightened of being kept alive artificially in a vegetative state, but advanced care planning allows doctors and relatives to allow death to occur naturally.

“We cannot say we want to be euthanized,” she said. “But we can say ‘withhold all health treatment so passing can occur.’ ”

“These documents are not created to say everybody should be let go,” said Martin. “They are created so you can use your voice at the end.”

“Our clients are not just planning for themselves,” she said. “They are planning for those people who will take care of them at the end.”