Families often left to decide loved one's fate

Aging column by Dr. Michael Gordon (02-22-2002)
Reprinted with permission from the Toronto Star

The family was in the conference room with the physician, nurse, and social worker. The doctor was explaining: "Your mother had another small stroke, her diabetes is out of control and she's had another episode of pneumonia, which we can try to treat again with antibiotics. Right now her level of consciousness is very low because of everything that's happening to her."

"Can't you treat her pneumonia with antibiotics and control her diabetes?" asked the eldest daughter. "You said her stroke was small, so that shouldn't kill her."

The younger daughter asked her sister, "Do we really want to keep doing this? After all, she wasn't that great before this stroke."

The tearful husband, who was 82 and coping with his own medical problems, couldn't say anything. The social worker leaned over, touched his arm and asked, "Do you think your wife would want to be treated under the present circumstances?"

He shook his head. "I really think she would want us to let her go. I used to do everything I could to make sure she was still with us, but I realize that this is not what she would have really wanted. I know that it's not what I'd want if I were her."

The doctor suggested the right treatment should be to alleviate pain. Fluids would be maintained for comfort. However, antibiotics would not be provided and other treatments, including the pills for her diabetes, would be withheld because she could not swallow.

"You know sometimes, even when we don't do anything special in terms of treatment, patients do recover," the doctor said.

The family agreed. A week later, the patient's fever rose again from pneumonia, which was not treated, and she died. The family felt comfortable with this outcome. The husband wrote a note to the health care team a few weeks later thanking them for being so supportive and kind at a time of great difficulty for him and his two daughters.

It's often very difficult for families to come to terms with the realities of life and death -- and the limitations of the health care system. Families struggle with emotions and the impact of loss.

Health care professionals often focus on clinical issues and whether a specific treatment might be helpful. They may feel that families are asking them to treat the patient in a way that makes no clinical sense. They lose sight of the turmoil experienced by loving family members. Also, there may be conflict within families about what decisions to make about maintaining life or letting it end.

When is enough enough and how does a family decide?

Families should understand that in this situation they are acting as surrogates, making a decision for someone else: the patient. Many surrogates mistakenly believe that their opinions or views are paramount when making treatment decisions. I have heard family members say, "I believe that my mother should receive this or that treatment because I think that is the right thing to do."

The real basis for making these decisions should be what the surrogates honestly believe the person they are acting for would have wanted, either from discussions or from a directive such as a living will. This is how Ontario's Consent to Treatment legislation approaches the responsibility of surrogate decision-makers.

Surrogates should try to determine from discussions or insights into values of their loved one how the patient would feel about treatment decisions. If he or she considered quality of life to be paramount and would never have opted to be kept alive in a permanent coma, that is a good reason for a family to refuse further treatment if this state would be the likely outcome. If the person was religious, his or her tenets should be respected as far as possible.

Sometimes it's hard for family members to know what the patient might have wanted. In this predicament, one decides on the basis of so-called "best interests" of the person. This reflects what most people in comparable situations are likely to want.

It's not uncommon for families to face these hard choices. Health care providers can help by being supportive and caring. It is impossible to expect anything more than that.

Dr. Michael Gordon is Vice-President of Medical Service at Baycrest, a professor of Medicine at the University of Toronto, and a member of the National Advisory Council on Aging.

These columns appeared in The Toronto Star in 2001 and 2002 and are reprinted with permission.