Making Medical Decisions for Others
"It is about what he would want, not what you would want"
By Robert Bernstein, M.D.
A while ago I was called by one of my father's elderly friends whose very elderly father was in the intensive care unit (ICU) at a local hospital. His organ systems had shut down and the doctors asked my father's friend whether they should begin dialysis. She said to me "How can I make that decision?"
I dread these kinds of calls; I'm not in a doctor-patient relationship with anyone concerned and I have no first-hand knowledge of the man or his medical situation, but medicine is a helping profession, so...
I said, "Actually, the issue for you is to act as if your father were able to tell you what to do if he could know and understand his own situation. It is about what he would want, not what you would want." I could hear the sigh of relief. She knew what to do. "He's always wanted to pull out all the stops, he's always wanted to live as long as possible. I know that he would want dialysis."
My turn to sigh. I knew it was the wrong medical decision; ninety-seven-year-olds with multisystem organ failure don't survive these kinds of insults. But it was the right ethical decision. She acted as he would have wanted to act for himself. Sadly, or perhaps not, he never made it out of the ICU. It is said that if your time hasn't come, even a doctor can't kill you. Conversely, his time had come, and at that age not much in the way of medical heroics makes more than a brief difference.
When my own father was 93 and lying in the corridor of an emergency room, we both knew he had only months to live. He had pancreatic cancer. He had just had a procedure done to make him more comfortable but he was still feeling awful. I leaned over the safety bar of his hospital bed and asked him what somebody must always ask. "Dad, I'm sure you've thought about this. If your heart stopped what would you like us to do?" He looked at me straight in the eye and said "Nothing! When I'm dead, I'm dead!" A relief for me...I knew his wishes and he knew the score.
To act as if you could ask and get an answer. Easier in some cases than in others.
There are all kinds of legalities. Who can make decisions for you when you can't make them for yourself? What about having both or either a living will or a designated power of attorney for personal care? Always a good idea for you to discuss with your doctor, but even more important, with your family and loved ones, about how you want to be treated medically when you are not in a position to be asked. If you don't designate someone then provincial law says we must turn to a hierarchy of substitutes in order of priority...your spouse, common-law spouse or partner, your child (if 16 or older) or parent, your sibling, any other relative by blood or marriage, and finally as a last resort, the Office of the Public Guardian and Trustee.
How do you discern someone's wishes from snippets of conversations over a lifetime, by looking at how they approached the arc of their life? Not very satisfactorily, and whoever in the family makes decisions always feels unqualified and disquieted.
And things change, sometimes in an instant. I had a patient in a nursing home. She required total care since her late 50s and now she was 75. She had, in no uncertain terms, made her wishes to be treated fully absolutely clear, anything up to and including restarting her heart and sending her to the ICU. I was called in on a Saturday morning because she "wasn't doing well." I arrived to find her in the middle of a serious heart attack, and she was dying quickly. The nursing staff had already called 911 and the ambulance was on its way, when she whispered, "Don't bother, I'm not going to make it anyway." She knew, and years of wanting all-out care changed in that moment. And she died before the ambulance arrived. We respected her wishes not to try to revive her heart and saved her the indignity of having her ribs broken in a futile attempt to do the impossible, restart an incurably failed heart.
I used to do chronic palliative care. Palliative care units are for people with a short prognosis, usually less than 3 months. Technically, I suppose we are all in chronic palliative care, but these chronic palliative patients were in a nursing home and very sick, yet dying slowly. And I would always ask them how they wanted to be treated if they couldn't make decisions for themselves. The answer was almost always "don't prolong me past my useful time."
I get it, but how do I know when that point is? Even when we all know the patient's wishes, it is up me to be the doctor and bring my knowledge and experience to bear, to be able to say "I think we are at the point where we are not prolonging life, but prolonging the dying process."
I am never certain, I'm always troubled, and I've been surprised in both directions. Yet the family has to know what I think, my best judgement of the circumstances. And then they have to decide: palliate or try to fix whatever the acute situation is. And I always say, because it is absolutely true, that whatever decision they make, they will feel guilty, and that after all is said and done, I will remind them that I told them this.
And they always feel guilty. If they make the decision to treat and prolong life, they feel guilty because their mother suffered longer. If they say "enough is enough" they wonder if she may have had more life in her.
Guilty as charged? No. I say: "You made the best decision you could respecting all the medical facts and your mother's wishes, and I told you that you would feel guilty. That is normal. Not knowing is normal, feeling doubt is normal, feeling guilty is normal."
When the dying are comforted and the inevitable is about to happen it is time to care for and comfort the living.