Imagine your life partner was in a coma, and the doctors tell you he is probably never going to come back. Would you stop his life-sustaining care if it were up to you?
If your wife suffered from advanced dementia and needed life-saving heart surgery, would you authorize it?
Could you tell the doctors to turn off your unconscious brother's ventilator and feeding tube if he will never be able to survive without them?
Could you live with yourself if you hastened your grown child's painful cancer death with terminal sedation?
It would be much easier to answer "yes" to these questions if you had a piece of paper (an advanced care directive), signed by your loved one, telling you exactly what to do if this worst-case scenario occurred. Then, all you'd have to do is speak up in the voice of your loved one and put your own values and guilt aside. Without clear instructions from the patient, you may live the rest of your life wondering if you'd done the right thing.
When my mother asked me to help her die outside the medical system, I was torn with guilt and the expectations of those who wanted her alive at all costs. Yet I did what she asked. I doubt if I could have done so without her explicit description of how she was ready to stop taking chances on the operating table and let go of her life.
Isn't this peace of mind a gift worth giving? Isn't it a gift you want to ask for from your loved ones? Think about it. There's not much you can do to make your death any easier on your family and friends. But you can prevent the trauma of making them hold your life in their hands by thinking ahead, providing the road map, and stating your choices about your end-of-life health care preferences.
National Healthcare Decisions Day (NHDD) falls conveniently every April 16 so you can deal with the difficult matters of death and taxes all in one week. NHDD is one day when we're asked to put our own discomfort aside and think about the loved ones we leave behind. The NHDD coalition is thousands strong, and it does its work without a staff or budget. The passion of its participating organizations has made this movement grow substantially for each of the five years of its existence.
Organizations all over the country are making resources available for everyone who's ready to relieve the burden on their next-of-kin. These hospitals, coalitions, hospices and community outreach organizations can help you prepare an advance care directive. And, just as important, they can help you start the conversation with your family so they will know what you want.
It's okay to want every last possible treatment to prolong your life, regardless of the state you're in. It's okay to draw parameters around quality of life and want to decline treatment under certain circumstances. The point is that it is your life and your decision. And you should make that decision when you aren't too sick to talk and reason.
In California, for example, more than one-half of all advance care directives are not honored by a dying person's loved ones. Why? In addition to language barriers, probably due to the guilt involved, the denial of imminent death, and the mistaken belief that medical science can heal everything. Early and consistent communication between families and medical providers is the key to having a good death.
From our earliest memory, we learn how to let go. To let go of the bottle, our mother's hand, our favorite snuggle blanket. Then, our grade school friends, our childish toys, our ideals. As we grow up we let go of jobs, of spouses, of our parents and children. Finally, we let go of life itself. Life. It's the one thing we know we'll have to detach from. For sure. For certain. Someday.
Maybe your end will come suddenly, and you'll never know fear or uncertainty. Maybe your end will come slowly, and you'll have plenty of time to think about how to let go. But equally possible, your end may come without your even knowing it. The end of your physical life might come well after your consciousness shuts down. And if that happens, someone else will have to make the decision whether or not to let go of YOU.
If you haven't left a legal advance care directive, you have decided to leave someone you love quite a responsibility instead. This is not how I want to be remembered. How about you? Only about one-third of adults have an advance directive, and most of their doctors don't even know it exists. Think it doesn't matter?
At this time of year I think of Terri Schiavo, a comatose young woman whose right to die was decided in the courts. Her husband believed she would not want to live on a respirator and feeding tube. Her parents disagreed and believed their daughter wanted to be alive at all costs.
The tragedy is that one of them was wrong. Terribly, terribly wrong. And we'll never know which one.
Janice M. Van Dyck is an award-winning freelance writer and author of Finding Frances, a novel about a family dealing with the ethics of end-of-life choices.
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