A couple of months ago, Vermont passed historic legislation, the Patient Choice and Control at End of Life Act, sometimes known as aid-in-dying, or death with dignity. It was the first state in the nation to enact such a law legislatively instead of by referendum.
Here in Maryland, if you are terminally ill, there are fine palliative care and hospice programs that provide essential and valuable services for the treatment of pain relief and depression, the two signature responses for avoiding unnecessary suicide in the elderly.
However, these approaches do not address the end-of-life needs of the vast majority of older middle-aged and elderly people in the general community who are not suffering from a terminal illness, chronic pain or depression. Their concerns are much more mundane, and to find out what makes them tick, one needs to talk to them, their aging children and their family doctors. What many of them will tell you is that they've lived a good life and they're ready when the time comes.
These are active older adults. Most of them don't want to go out kicking and shouting — they'd rather go in their sleep. Wouldn't we all? But since no one can guarantee that, they would like to know that they are not going to suffer if something should happen that would render them incapable of speaking up for themselves to direct their own care, such as a stroke or a catastrophic accident. To many of them, a long, slow decline that would drastically diminish their quality of life is synonymous with "suffering."
What these people need is a frank conversation with their family doctor and an ongoing dialogue with their immediate family members so that everyone is reading off the same page. Unfortunately, very few people feel comfortable bringing up the subject themselves. While physicians have finally started to break down the barriers about taboo subjects such as sexual abuse, and are even asking about them routinely during annual physical exams, the time has come for doctors to conquer the final frontier and initiate discussions about end-of-life issues head-on.
I speak from both professional and personal experience. As a nurse, I cared for countless elderly patients who lived in denial until a catastrophic health event became the elephant in the living room that no one knew how to talk about. Frequently, they ended up undergoing painful, expensive treatments ordered by their doctor that they didn't fully comprehend but were fearful to question because they were afraid to hear what the doctor would say. The doctor would order round after round of increasingly invasive, debilitating treatments that had no meaningful chance of success. All because of a failure to communicate.
The doctor's first duty is to adhere to the time-honored Hippocratic Oath, "First do no harm" — which, incidentally, prohibits her from treating a patient needlessly in a futile effort to prolong the inevitable. But many doctors still feel defeated by death as if it were a contest, rather than appreciating it as a transition that is part of the natural order.
When my elderly mother-in-law had a debilitating stroke after a long course of congestive heart failure, our family doctor, who still made home visits at a time when it was no longer fashionable, made certain while she was in command of all her faculties to have a few gentle and frank discussions with her about her wishes for the course of her care. In her garbled speech, she nevertheless made it abundantly clear that she did not want any "heroic measures," or to be "hooked up to any tubes."
After those discussions, she signed a DNR (do not resuscitate) order, a yellow sheet that we taped to the front of the refrigerator (the first place the paramedics look). When she began to fail, along with the ineffable sadness we felt a sense of peace because we knew that we were honoring her wishes. When she began to refuse food and fluids, we knew it wouldn't be long, and she gradually lapsed into a coma and died. She had lingered at home for 16 months from the time of her stroke, but for her this was a "good death" because it was the one she had chosen.
My father, on the other hand, who was a vital and active doctor who exercised and was fit into his 80s, was stricken at age 83 with a devastating recurrence of coronary artery disease that lead to acute heart and kidney failure. I remembered him doing 50 push-ups and sit-ups every day of his life when I was young, and he played tennis well into his 70s.
A few weeks before he died, he informed me that the life of a cardiac invalid, hooked up to a dialysis machine, was not a prospect that would sit well with him. With the clarity and insight that come with being a physician, he had the knowledge that all patients are entitled to have from their caregivers, and received the enlightened care that allowed him a gentle death at home instead of what he would have considered a lingering, medicalized nightmare.
It is for each person to decide for themselves, but they can only do that after they have been informed about their condition, and that is the doctor's responsibility. Organizations like Compassion and Choices, a national advocacy group that works to "improve care and expand choices at the end of life," provide a step in the right direction. So did last year's decision by the Maryland legislature to let people put advance directives online so emergency personnel can access them.
The most important step you can take right now is to sign advance directives and discuss how you feel about death and dying with your doctor and family, openly and often. Like everything else in life, it gets easier each time you do it.
Ruth Goldstein is a freelance writer in Baltimore. Her email is email@example.com.
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