A Winnipeg woman says she's had to fight to get medical staff to treat her father because he has vascular dementia.
CBC is not identifying the woman or her father as the family fears his care would be affected by this story. Linda's (not her real name) 82-year-old father was first diagnosed with the disease in 2012 that left him confused but not incapacitated. Since that time she said she's had to fight to get doctors to treat him for other health issues.
The worst incident happened in 2014 when her father needed emergency surgery to save his life after suffering an abdominal aneurysm.
"It was awful"
"The surgeon came in the room and was yelling at all the staff," said Linda.
Linda says the surgeon was angry staff hadn't reported her father's medical background, because the surgeon had a policy not to operate on people with dementia, cardio-vascular disease, or cancer.
"The surgeon would not have even come to see my dad had the surgeon known [his medical history]," said Linda. Then the surgeon shared something personal with Linda and her family.
"The surgeon had a family member with dementia and they prayed for something like this to happen to their family," said Linda. "The surgeon said the path my dad was going down was not a good one and this would end it."
After meeting Linda's father, and speaking with the family, the surgeon did eventually operate. Her father recovered and was able to return home after the procedure. But the experience shook Linda. "It was awful," she said.
Dr. Goldman weighs in
The host of CBC's White Coat Black Art, Dr. Brian Goldman, said surgeons should at least assess patients before refusing to treat them. But Goldman said with the exception of CPR, you can't compel health professionals to do a treatment if they feel it's not appropriate or that it wouldn't restore the patient's quality of life.
Goldman doesn't doubt that some doctors could have a bias against people with dementia, but in his position as an emergency room doctor he often sees more overtreatment than undertreatment.
"Patients [with dementia] are admitted to hospital with kidney disease, diabetes, heart disease," said Goldman. "They start getting tests and treatments without a sense that it's going to improve their quality of life."
Medical futility is a concept that is hard to define, but doctors know it when they see it, Goldman said.
Goldman points out that often health professionals personally would refuse the treatments they themselves sometimes recommend to patients.
"That's because we know that those treatments at that stage of futility are not worth it," said Goldman.
"Gutsy to say no"
"It's actually gutsy to say no," said Goldman of doctors who refuse to approve medically futile treatments. "It should be said respectfully, and not be a unilateral decision. But it's gutsy to do that in our world because we're so concerned in retrospect people are going to point fingers and say we didn't try hard enough."
Goldman sees this as a critical conversation for baby boomers to have. "We're seeing our parents dying dreadful deaths. That should bring the issue home to us," said Goldman, a baby boomer himself. "We have to start thinking now: what kind of death do I want."
Medical futility can be hard for families to accept. "There are examples of family members who just don't understand that death is a part of life," said Goldman.
"Some bio-ethicists believe patients and their families actually have an ethical obligation to refuse treatment that is futile," said Goldman. "At some point it's how you die that's more important than trying to squeeze out an extra day of life."
Dr. Goldman's advice
Here is Goldman's advice for families as they confront end of life care for their loved ones:
- Do your homework. Read up on treatment options that are available or ask someone you trust what is an appropriate treatment.
- Don't be afraid to ask if your loved one's medical condition is affecting the doctor's recommendation.
- Make sure you attend meetings with medical staff, especially if you're the substitute decision maker for your loved one.
- Try to have clear directives. Have the discussion in advance about what you and your loved one would want.
- Ask what the treatment will do to improve your loved one's quality of life, or if it is medically futile.
If you have a story related to aging that you want to share, contact the CBC's Bridget Forbes at firstname.lastname@example.org