Sep 26, 2009

Who Determines Quality Of Life?

This is an interesting question Doctor D found in a discussion going on at the Serenity Now Hospital blog.

Quality of Life is the concept that medical care should focus not just on the number of days our patients live but the amount of meaningful and fulfilling health within those days. Patients will often sacrifice length of life for improved quality of life. Some patients also decide that in the face of a life-threatening illness they will not have further treatment once their quality of life falls below a certain level.

Reflecting on quality of life helps doctors recognize the humanity of their patients. It helps us realize that that longer life isn't always better. At its best, quality of life allows the patient to decide how they approach illness and disability, while the doctors respectfully relinquish control to the patient's wishes.

Doctor D believes that quality of life cannot be determined apart from the patient's personal values and preferences. Many doctors, however, make quality of life judgements about their patients. Often physicians embrace the concept of quality of life without acknowledging that it is a personal decision that belongs to the patient not them.

On the post "Compassionate Death?" Doc Sensitive relates the story of an attending that decided not to treat an elderly man with dementia due to the attending's belief the man had no quality of life. The attending allowed the patient to die comfortably and untreated without ever trying to find out the old man's desires or contact the man's family. Doc Sensitive wonders if this was the right way to handle this patient?

The discussion after the post is also interesting. (Doctor D threw his 2 cents worth into the conversation too--It's the 3rd comment down.)
What do you think? Would you be comfortable with a doctor making a quality of life decision for you if you couldn't speak for yourself? Do you think Doctors are the right people to be making quality of life decisions? Do accounts like this make you more likely to get a living will or discuss your wishes with your family?
Doctor D will be back soon with more answers to your questions.


WarmSocks said...

When I first read the post at Serenity Now, my reaction was, "That doctor can't have any idea about the patient's quality of life!" Although I don't think that it's a good idea to waste time and money on futile care, the details provided in that story weren't convincing that this was one of those times.

Life in a nursing home does not automatically equate with a horrible existence. I spend time at a nursing home every week. Many of the residents are delightful people. They can't do all the things they did fifty years ago, but they keep tabs on their children, nieces and nephews, grandchildren, and great-grandchildren. They care about people, and people care about them. They look forward to visits and sharing stories. The bookmobile stops at the nursing home, and residents can borrow books. Blind people can get books-on-tape. There are trips to the ocean and the mountains and the county fair and the shopping center. There's a luau twice a year. (Sometimes I think the people there have a more active social life than I do! I'm busy with the day-to-day activities of raising my family; one day I'll have free time again.)

But there are other residents, too. The Alzheimer’s wing is really sad. IMO, residents and their family members should be required to state their preferences on how aggressively they want to be treated when first completing the nursing home application. Periodic updates - maybe even classes to educate family when continued treatment is no longer the compassionate thing to do.

Now I've rambled way beyond what you asked. On to the questions: No, I would not be comfortable with any stranger making quality of life decisions for me; it wouldn't matter whether or not the stranger was a doctor. Those are decisions that individuals need to make for themselves. My husband and I have already discussed this issue. We both have a living will. On the off-chance that we'd both be seriously injured simultaneously, we have also discussed our wishes with our contingent MPOAs.

But I still keep dragging my feet on asking my mom what her preferences would be. My siblings and I have talked, and said that we need to have this discussion with our mother. Hard to do, though.


A beautifully written post, some great points and links again from you.

I have seen enough people suffer through family members not letting the dying person have their wishes to return home and pass on quickly or go the way they want to go. There needs to be a balance between quality over quantity in regards to terminal illness. Our latest argument here in N.Z is the use of continuous sedation before death. If a patient asks for it they should have that right to die with dignity and not suffer.

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