End-of-Life Choice, Palliative Care and Counseling

A Gift from the Heartby Pat Tucker

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Mom died three and ½ years ago from “complications” of Alzheimer’s. Compassion and Choices, the Hemlock Society, Washington Death with Dignity, Oregon Death with Dignity, and several other organizations devoted to giving people more choices in how they died counted her as a member. I grew up listening to her say adults should be able to make their own choices about how and when their life ends.

 

Her sister in law died the slow death of Alzheimer’s and she did not want it for herself. She watched in horror as my aunt and her good friend of 50 years lay curled in a frozen fetal position while people spent hours poking miniscule amounts of food down her. “If other people want that, ‘fine’ but I don’t!” She sought assurance that I would “just kill her if she didn’t know enough to take care of herself.” I couldn’t make that promise of course. But in 1997 we did sit down together while she wrote a living will aimed at truncating her life as soon as possible if she was struck with Alzheimer’s.

 

As she wrote, I questioned her about exactly what she meant, “What do you mean by ‘care for yourself’?, But what if you only need someone to help for an hour a day?, Mom, that’s illegal, you can’t ask me to do that!” The result was the following living will.

 

Eileen Tucker’s Living Will

 

I, Eileen Tucker, being of sound mind, do hereby declare that if I become physically or mentally incapable of making decisions about my medical care, that the following instructions be followed:

 

            1. No resuscitation*, medical intervention*, or nursing care* unless I can reasonably be expected to recover and return to the functioning level I was at in 1997 within six months of the resuscitation, medical intervention or need for nursing care.

           

            *I define resuscitation, medical intervention and nursing care to include:

                        a) tube feeding

                        b) dialysis

                        c) assisted breathing with a respirator

                        d) surgery

                        e) hand feeding

                        f) medication, including antibiotics

           

            I wish to have the above only if they are employed to keep me comfortable and free from pain and not to extend my life, unless, as noted in #1, I can reasonably be expected to return to my physical and mental functioning of 1997.

 

            2. In the event that I am not expected to be able to recover and return to the functioning level I was at in 1997, I wish only to receive the care necessary to keep me clean and comfortable and to be kept free of pain and discomfort to the maximum extent possible, even if it causes premature death.

 

            3. If I become permanently incapacitated mentally, I wish to be restrained only if I am endangering other people’s lives or property, and not to protect me from endangering my own.

 

            4. In the event that my mental health gradually deteriorates, and if it is legal, I request that I be euthanized at the point that I require more than 5 hours of assistance with personal care (meal preparation, planning, bathing, oversight, etc./day). If it is not legal, I wish to receive the minimum amount of care required by law.

 

            I have discussed my desires fully with my daughter Patricia A. Tucker and appoint her to make decisions on any details that are unclear or are omitted from the above.

 

            This living will is in addition to my durable power of attorney for health care.

 

            I make this will of my own free will, under no undue influence on this 23rd day of July, 1997.

 

It was not perfect. I was still forced to make many difficult decisions without direction. Yet, despite its limitations, it proved immensely helpful and reassuring to me as we wound our way through her final years months, weeks, days, hours and minutes. I will be forever grateful that she was willing to communicate, in detail, what she wanted.

 

Obviously not everyone wants what she wanted. The beauty of choice is that, as individuals, we can determine what we want. I share it with you, not to copy, but to give each of us the courage and foresight to write our own, in our own words that spells out to the extent possible exactly what it is that we want our caretakers to do if we are not capable of making decisions for ourselves. I share this story with you to encourage you to initiate the discussion with family members about what they want for themselves. It may turn out to be the best, most enduring gift we can give each other this holiday season.