Making tough decisions before you have to

Tuesday, January 17, 2012 - 1:41pm

By James Whitehead

Hanging on a wall in a busy downtown Halifax drop-in centre a poster silently asks one simple question: If you ended up in the Emergency Department and weren’t able to speak for yourself, who would you want to speak for you?

Bryon Anderson is the director of the Metro Non-Profit Housing drop-in centre. He and Monica Flinn, a nurse with Mobile Outreach Street Health (MOSH), came up with the idea of helping people living on the street or in shelters write out their personal directives.

"We are becoming more proactive now because there was a certain need and people had come to us,” he said. “What we have found that there is certainly a desire for this to happen." 

Writing a personal directive allows you to make decisions about your personal care ahead of time in case you are ever incapacitated and unable to make those decisions on your own. You can also name the person you want making decisions for you.

Anderson said this is especially important for people living on the street because they are at higher risk of illness, injury and incapacitation and they are often alone.

"Many people have friends and acquaintances and that sort of thing but no one really steps up to the plate and makes these hard decisions," he said. "It sounds morbid, but it’s not like we're saying 'you’re going to die right away,' it's just that everybody's going to die sometime, so it's just, how best to die with dignity."

Anderson and Flinn said that, unfortunately, people living on the street are more likely to fall through the cracks in society and the health care system. They see personal directives as important because it helps give them a voice they might not have had otherwise.

Choosing who you want to be making decisions for you in a difficult situation is not always easy, especially for people who have been estranged from their families or who have no family at all.

"It's really important for a substitute decision-maker to be making a decision that person would make, not what you would make for yourself or not what you would like for that person," said Flinn.

Paula Wickenden, a social worker at Capital Health, said everyone should make a personal directive sooner rather than later.

“We don't know if there is ever going to be a time when any of us are either going to be temporarily, long term, or permanently unable to make decisions or even speak for ourselves.” she said.

The worst time to have a conversation about personal directives it at a time of crisis, said Dr. Sam Campbell, the site chief of emergency medicine at the QEII

“Both the family and the patient are at a stage of cognitive overload and there are just too many things happening,” he said. “You just default to doing something as opposed to nothing.”

Dr. Campbell said having a personal directive helps to take some of the stress away from a traumatic situation and provide some clear direction for the family and the health care team. 

“The important thing is to have the conversation before you are in a situation where you are forced to make some very difficult decisions in a stressful situation,” he said. “This way not only are the patient’s wishes honoured, but the resulting care will be that much better.” 

Wickenden said it’s not enough to just tell your health care team who you want to be your decision maker. If you don’t have a personal directive stating who you want your substitute decision maker to be, the hospital defaults to a substitute decision maker hierarchy based on legal and blood relatives such as a spouse or parent.

“Verbally, you can tell me whatever you want, and I will honour that because you can speak for yourself,” she said. “But if you are incapacitated for any reason, I cannot honour your word any longer, I now have to go to the official hierarchy list because the situation has now changed and you can’t tell me what your wishes are.” 

Anderson said there is already a growing interest in personal directives among the street community since he and Flinn started being more proactive about them. He is hoping this will lead to better care and more support for people living on the street.

He said there is a possibility this growing interest may lead to some sort of palliative care plan, something currently lacking for the street involved community.

“There are conversations around end of life, or even health care that we aren't having in our society,” said Dr. Campbell. “The harsh reality is that at some point, we will have to have the conversation whether we want to or not.” 

For more information...

Putting a personal directive together is as easy as writing down your preferences for your personal care. You don’t need a lawyer; however you will need someone to witness the document.

It's a good idea to give a copy of your personal directive to your family doctor and make one accessible to your substitute decision maker. You can also provide a copy to the hospital and they will put it on your medical record.

Capital Health has a pamphlet outlining some of the more common questions and answers around personal directives. The pamphlet also includes an optional template.

The Justice Department of Nova Scotia also has some helpful information on personal directives and the Personal Directives Act.

Bryon Anderson is raising awareness about personal directives among Halfax's homeless population.