For me, hell existed inside the pain of this wounded body as it failed miserably in any attempt to interact with the external world, while heaven existed in a consciousness that soared in eternal bliss. And yet, somewhere deep within me, there was a jubilant feeling, thrilled that I had survived. -- Jill Bolte Taylor, Ph.D. in My Stroke of Insight
A year ago, out of the blue, my wife became critically ill. When my son arrived in the ICU waiting room, I told him that his mother and I had previously discussed what each of us desired to do should we face such a difficult situation. Thankfully, she recovered and is now back to taking care of everyone else.
As a neurologist, I have consulted with many families who also faced a family member's sudden, desperate illness. An unexpected event changed their family's lives in less than a second. We have to ask these families to make decisions on how much care we should provide and to tell us what their loved ones would or wouldn't want done. These families must not only absorb all of the new information about their loved one's condition but also too often "guess" what their loved one would want them to do. Unfortunately, many of them had never talked with their loved one about such a difficult situation.
These may only seem like hypothetical questions to discuss at a cocktail party with a drink in one hand and an hors d'ourve in the other. How many times have you said, "I would never want to live if..." But, at 2 a.m. in the ICU, unconscious, on a ventilator and surrounded by your children and husband, it is no longer a party exercise -- it is real. You need to have a serious discussion with your family about your wishes before they're faced with making those choices themselves. If you don't, they will wish you had.
It Is Not Just the Elderly
We tend to think that medical decision making discussions are primarily for the elderly or for those with cancer. Yes, they need to plan, but this blog is directed at the rest of you who have completely ignored this issue. You don't think it will happen to you, but you may find yourself at age 40, 50, or 60 in an ICU, your family unprepared and in a state of shock.
Ellen Goodman and her colleagues created the Conversation Project to help you become better prepared for these types of events. You can go online and print off a "starter kit" that works for all ages, the able-bodied and the disabled, the eager and the reluctant participants.
Right now, it is not too late. You can still make your usual New Year's resolutions to lose weight, be kind to others and make peace with the sister you haven't talked to in 10 years. In addition, I am going to give you a list that you must check off in the first few months of the new year. If you think this is going to be a difficult discussion in the comfort of your home, it will be far more difficult at 3 a.m. in a hospital waiting room.
"This is what I want done if..."
I am not a lawyer and will not pretend to give you advice about living wills or advanced directives. However, I will tell you that while they are practical guides for health care professionals, the most useful information for a family is knowing what their loved one told them, face to face, about their wishes. Many times, I will ask families to imagine that for five minutes their loved one is standing with us at the bedside, observing what is going on. I then ask the family, "What would your loved one want us to do?"
You may want to use the entire Conversation Project kit, but for now, sit down and get started by asking each other:
• Under what circumstances would you want life-sustaining measures discontinued? While you may only be able to speak in generalities, it is a start.
• Try to give your family some guidance on what you consider "quality of life." This varies greatly for each person and certainly by age group. Younger people tend to invest a great deal of value in physical abilities, while those of us with a fair amount of "seasoning" realize that physical abilities are elusive and our cognitive abilities have much more value.
• If you did not have cognitive awareness or were severely cognitively impaired, would that impact your decision on how much care you would want?
• Would you want a feeding tube or water (hydration)? If you wouldn't, put it in writing, since some doctors and facilities may have a problem with this.
• Is your will up to date? I cannot tell you how many patients I have treated who were in a coma only to find out that the last time they updated their will or power of attorney was when they had their first child.
• Finally, most importantly, have you said all the things you need to say to each other and your children -- now, while you are cognitively intact? Families without "loose ends" are able to make the difficult medical decisions much more easily. Every doctor has a dozen stories of dealing with a family that seems to be in agreement on what to do for their loved one, when a daughter or son from Cleveland shows up and tosses an "emotional grenade" in middle of the room.
This may all sound straightforward, but it isn't. My 96-year-old mother is in a nursing home and has always refused to discuss any of these issues. She has always responded, "You just do what you want," and we have. Many of my friends and associates have told me that their spouse or children refuse to have "the conversation." Get over it. This is one of the most important resolutions you may make this year. Try to keep this one.
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