I was raised by my great aunt Mollie Cannon in Perry County Alabama. She died a few years ago of pneumonia. In the late 1980’s she began to show signs of dementia. Through the years, she had talked on and off about life and the end of life. One of her favorite saying was ” We got sick days coming..you just gotta to live”, and she lived! In the pre-dementia days Aunt Mollie made her end of life plans clear to all of us( my brother and two sisters). She had a peaceful transition. We celebrated her life and times with joy and gratitude.

A few weeks ago, I was privileged to take part in a gathering of end of life experts. Noted journalist Ellen Goodman was instrumental in bringing the distinguished  group together at IHI (Institute for Health Care Improvement). I was honored to share a table with Joanne Lynn MD, author of “Handbook for Mortals”. The purpose of this gathering organize a  coalition of experts in the field to begin a nation wide movement to encourage “The  Conversation” about end of life. Handbooks for Mortals can be found free on-line at:

http://www.growthhouse.org/educate/flash/mortals/layouts/frameset1.html

This is an excerpt for Chapter 10 of Handbook for Mortals:

“How can you get started? First, think in very general terms. Do you want every possible treatment tried, even when it involves mechanical support for body functions, or even when it is not likely to work? Do you want to die at home, even if doing that means not having a way to get some treatments? Have you talked with your family about the kind of care you want? Does your physician know how you feel? Many of us don’t take the time to figure out our wishes and hopes for the end of our lives. Others write living wills, but don’t tell anyone what they really want that document to accomplish. These conversations are an important part of living and dying well with a serious illness.”

Below are nine important issues to discuss with family, loved ones and health care providers as you make end-of-life decisions.

Talking about these issues may be difficult, but it will help your loved ones decide what to do if you are not able to make these decisions yourself.

1.Your Choice of a Spokesperson. If you have designated a patient advocate or a spokesperson to express your wishes, make sure your loved ones and health care providers know who that person is, how to contact them and why you made that person your patient advocate.
2.Your Beliefs and Values. Talk about what makes life worth living to you, what would make it unbearable, and why.
3. Health Conditions. Explain how you feel about being kept alive if you are not able to speak for yourself.
4. Life-prolonging Treatments. How do you feel about life-prolonging treatments? Do you want them?
5. Your Vision of Dying. If you hope to die in a certain way—at home, in your sleep, free from pain—talk about it.
6. Organ and Tissue Donation. Discuss your wishes with family members. To register as an organ and tissue donor.
7. Funeral Arrangements. Share your thoughts about the type of service you would like to have and what you want to have done with your remains.
8. Documentation of Your Wishes. If you have completed an advance directive or other similar statement, make copies for your physician, your patient advocate, family members, friends and health care institutions. Carry with you the name and telephone number of your patient advocate.
9. How Others Should Use Your Advance Directive. Your instructions and personal statements can be understood either as specific instructions or general guidelines. You can help others interpret your wishes by including something like this in your document:
♦ “I would like the statements in my advance directive followed to the letter.”
♦ “I would like the statements in my advance directive to be used as a general guide.”
♦ “I want those statements that I have marked with a star (*) followed to the letter because I feel very strongly about them. Use the rest of my statements as a general guide.”

Adapted from the advance care planning workbook, “Your Life, Your Choices” and from the website http://www.completingalife.msu.edu.

I still miss those I loved who are no longer with me but I find I am grateful for having loved them. The gratitude has finally conquered the loss.

— Rita Mae Brown

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