Personal directive gives control over medical treatment

You have the right to determine what treatment you do not want to receive

- Design Pics photo In the event of a medical emergency, a personal directive can ensure medical personnel provide treatment you want and refrain from treating you in ways you don't want.

By LASHA MORNINGSTAR
WCR News Editor
Edmonton

Cast your mind back to the story of Karen Ann Quinlan in the 1970s. At 21, she returned from a party, fell unconscious and lapsed into a persistent vegetative state.

After several months on a ventilator and no improvement, her parents asked that she be taken off life support.

The hospital refused.

"They had an emergency measures act similar to ours," says Remi St. Pierre," that says you give emergency treatment to someone without recourse. Once you begin the emergency treatment, you cannot discontinue it."

The Edmonton lawyer explains that the hospital's fear was that it would be charged with manslaughter.

So the court hears what the family wants, what the hospital wants, but not what Karen Ann wants.

And so triggered the realization that society needs advance health directives - a document that says what medical treatment a person wants done should they not be able to speak for themselves.

Do you have a will? We have 100 per cent chance of not leaving this earth alive, yet only 30 per cent of us have that final testament and only 10 per cent are up-to-date. As for the advance health directive, St. Pierre guesses 10 per cent of us have one drawn up for ourselves.

The Province of Alberta brought in an act to have someone act on your behalf for medical decisions in 1998 and the Personal Directives Act came forward in 2000 that meant you have the right to name a person who can make decisions for you if you are unable to do so.

First question

Now, when you go to the hospital, the first question usually is, "Do you have a personal directive?"

"What they are asking is, 'If there is ever a situation where we can't get answers from you, is there someone we can talk to?'" says St. Pierre.

That someone makes decisions about what kind of care you want, what doctors you have, if they want a second opinion, if you are happy with the hospital . . .

But what if your personal directive says you don't want heroic measures used? What, in your mind, is a heroic measure?

To smooth out that potential conflict, St. Pierre uses a graph in the directives he draws up that specifies the kinds of treatment they are looking at, what they are, circumstances when they might need it, plus descriptions of various medical conditions.

"I always say yes to tube feeding," says St. Pierre. "The doctors tell me they do not know if a patient is suffering if they deny nutrition and hydration."

Pain relief

Pain relief is another expected yes, and usually employs Demerol or morphine to calm a person down and diminish their discomfort. But this depresses the respiratory system and may well accelerate death.

"There is no doubt some medical practitioners use the pain relief as an assistant and may well affect the onset of death as well, " says the city lawyer.

St. Pierre pauses and asks, "I don't know if you have been in an auxiliary hospital and seen people, half conscious, drooling, strapped to a chair. Perhaps that's a situation a person would not like to be in. We are not saying pull the plug, but we are saying you might not want these extra treatments if the occasion arose."

If they had that personal directive, they could make that choice as to when to extend care. Example. Suffering from mild to moderate dementia with good days and bad days, then keep all the resources. But in severe dementia, I say no to emergency care, but yes to tube feeding and pain relief.

There are those clients who tell St. Pierre what happens to them is the "will of God and I want yes to everything."

"And that I respect," says the Catholic lawyer.

"But it is a big decision. It may well mean you are living under a tremendous shadow - in a respirator situation, with no consciousness for years on end. . . .

"You have to balance this with the dignity of the person as well. You want to be able to make a decision that is following your authority, but also will live on in your memory with the people you leave behind as well."

Should he be revived?

This is also a time for brutal honesty.

Say a man is hit by a bus and the hospital calls his wife and asks. "If your husband has a heart attack or stroke, do you want us to revive him?"

Flash now to the wife. Putting aside her feelings for her husband, she is probably in a direct conflict of interest. If he dies, she is a beneficiary. She is the executor. All of these things come to the fore.

"It is so much better for her to say - 'He has a personal directive. Please follow his instructions,'" advises St. Pierre.

And not to worry. The next of kin is always notified that a personal directive has been engaged.

You have the right to deny treatment. And the agent named under instruction must follow the instructions named by the principle. They cannot go against what the client dictates in their directive.

"The legislation is blunt, " agrees St. Pierre, "but we are dealing with life and death and it is charitable as well."

St. Pierre says some say the bill takes this authority away from God, and we are acting as God - saying who is to live and who is to die.

"But my feeling is what you are basically saying is you want not only the best interests of yourself, but also the next of kin and those who can benefit from you and all the things around you.

"I believe our time on earth is very important, but it is only one part of our full existence."

What about transplants?

"To harvest organs, the person must be alive," says St. Pierre. "The agent cannot donate body parts from a living person. But if I told you, 'Please do so (donate my organs),' then you are on solid ground - you are following the person's instructions."

And as the person's agent, you do have the right to know what is in the patient's medical file.

"Privacy legislation says no one has the right to ask your doctor what is in those files," says St. Pierre. "But in this directive we are giving this authority - The Health Act Under 1014F and G of Chapter H5 - to your agent to make that request."

There is another vital piece of legality St. Pierre recommends.

Using his wife as an example, he says what would happen if he only had power of attorney to look after her affairs should she become incapacitated.

But what if she has a massive stroke and is not able to consult with him?

"That power of attorney is no good," says St. Pierre. "What you need is an enduring power of attorney. This continues even if she cannot understand what I am doing for her."

Approximate cost? Roughly $125.

Documents lacking

Without that enduring document, St. Pierre would have to go to court with a physician's documentation saying his wife cannot make her decisions and ask for a trusteeship to take care of her affairs and guardianship to take care of her.

"So I would have to spend a couple of thousand dollars to have some stranger tell me what I could do with my wife and report back every two years to tell what I have done with her assets.

"You have the court intervening, the public trustee involved, the public guardian involved taking care of the members of your family.

"That is why you want to have an enduring power of attorney to tell you who is in charge if something happens when you can't take charge and a personal directive to give health care authority and a will if, heaven forbid, things go to the worse."

With 90 pieces of legislation in place the government puts into motion if you do not have a will, enduring power of attorney or directive will take care of you, St. Pierre suggests people invest in a lawyer's expertise.

A specialist in wills, estates, trusts, tax and related litigation, St. Pierre underlines he means " no disrespect to those who draw up their own wills or directives."

"But if I am going to have an appendix out, I would rather have a doctor do it. I might be able to do it," he says with a chuckle, "but I don't want to flub it."

Without a correctly drawn up directive and extended power of attorney, "decisions could end up going to strangers that have nothing to do with what I personally want."

The above information is a brief outline of basic legalities, and one should consult a lawyer for their own specific needs.

'Take me out of ICU'

As an example of the humanity that can be incorporated in a personal directive, St. Pierre shares one profoundly compassionate personal directive dictated by a chief medical examiner in Edmonton.

"We have a problem with our health care system," the physician told St. Pierre. "I want a personal directive. But I have lived a comfortable life and done very well.

"What happens if I find myself dying in an ICU? Outside, a 35-year-old man with two kids needs the ICU who has a chance at success. I don't want to deprive that man of the ICU.

"So I want to go one step further. If someone else can better use the treatment, I want them to take me out of the ICU."

The physician took his directive further.

"Use my organs."

Emotion fills Sr. Pierre's face as he concludes the client's story.

"What a charitable thing to say."

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