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Just 12 Days 'til NHDD 2011: Won't You Share Your Story?

So here’s my story:

I clicked the link to fill out my very own advanced care directive. What an odd feeling to be the ‘patient’ filling out this form. It’s a subject I’d broached with my family time and time again (and, they were having no part of it), something that I’ve publicly advocated for over a year and that I’d publicly and privately chastised others for either not doing or not being interested in doing. And now, here I was, finally making an honest advocate of myself. As I read the instructions, all I could think to myself was ‘who can I possibly trust to respect and voice my wishes? ’ I’m closest to my twin sister and my mom, but not only do they not even trust me to pick out my own wardrobe, I can’t even bait them into a conversation about advanced care directives. Oye Vay! So I read it again! After more careful thought, I decided that my mom might let emotion cloud her judgment and my advanced care directive may turn up missing. But Melissa – my twin sister – on the other hand, she’s a straight shooter. She might not like or agree with my choices, but she’d speak up because it’s the right thing to do.

Then, I got down to business, filling out the form! Luckily, this part was easy…what I had done for the past 16 months, is deliberate and clearly determine what I would or would not want done in terms of life sustaining treatments in various scenarios of terminal illness. Do attempt curative care in the initial stages of illness (if you haven’t already tried and failed) if physicians are hopeful of recovery or the odds seem like they are in my favor. DO NOT seek life sustaining care if it’s apparent that I’m dying and nothing is going to stop that process; let me live comfortably in my home surrounded by my stuff with hospice taking on the burden of care and giving aid to family caretakers. The details of which I clearly stated in the five lines allotted. And, it was a good feeling. In fact, ‘good’ may be an understatement, a wave of relief washed over me! My next thought was my next step: convince my family to have the same piece of mind I experienced when my advance directive was complete. So I guess my story is to be continued...

 

You may –or may not—have been able to relate to my advance care directive story. However, many of the people I’ve shared it with in hopes of sparking ‘the conversation,’ have. We want the NHDD initiative to inspire people from all walks of life to be moved to plan their healthcare decisions and so we need people from all walks of life to share their stories.

 

So, now I ask: after reading mine, won’t you share your story?

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Completing my own Advance Directive — Part 3 of 3


What instigated me to begin this journey of advance care planning at a young age and prior to personally experiencing serious illness?

In 1997, I was asked by an editor at the Washington Post Health Section to review several new books about hospice care, the subject of my specialization as a freelance newsletter editor. When I finished, I proposed another article: to undertake and to describe my own process of advance care planning to complete an advance directive, either a living will or durable power of attorney (DPOA) for health care decisions.

I would try to imagine and spell out what kinds of medical treatments I might want or not want in some future crisis when I was incapacitated and no longer able to express my preferences. Mostly, I wanted to see how difficult it would be—whether it was something ordinary people could do without discomfort. The whole process felt unnatural and uncomfortable, like a role-play exercise at a company training seminar. From the vantage of middle age and good health, trying to visualize and then discuss some undefined, distant future crisis just felt stiff. I couldn’t figure out how to bring the process to life until I decided to write an addendum, an attached advisory outlining my values as best I could express them and what would be most important to me regarding medical treatments and decision-making.

I completed my advance directive and then filed the article. But my editor promptly decamped
for Paris. His replacement found it unconvincing and it never saw the light of day... until now. So my hope is that highlighting my process will show that it is possible to complete an advance directive and live to tell the tale, and perhaps remind others with an interest in care at the end of life that they should bring that interest down to the personal level and do their own. For themselves and those who they love.

But I learned a few things about advance care planning along the way. I learned that a living will containing a laundry list of wanted and unwanted treatments for some distant future crisis is less useful than thinking about underlying values and then communicating them to someone we could represent them through a DPOA. I think a professional guide to the process could be a lot of help; otherwise, don’t feel surprised if it feels a little formal and stiff and unnatural.

This is the third part of Completing my own Advance Directive —  And Living To Tell The Tale of a series by Larry Beresford. Please refer to Part 1 and Part 2 if you are interested in reading the complete series.

Please consider sharing your experience to help the public understand the importance of advance care planning.


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Completing my own Advance Directive - The Addendum

Completing my own Advance Directive—and Living to Tell the Tale Part 2 of 3 by Larry Beresford

As highlighted in Completing my own Advance Directive—and Living to Tell the Tale Part 1 of 3: In the end I went for the DPOA and named Rose as my agent, but it still felt incomplete. So I decided to write an addendum- an attached advisory outlining my values as best I could express them and what would be most important to me regarding medical treatments and decision-making. 

Reading it 13 years later, I can see the influence of my experience in hospice care, both as a writer and a patient care volunteer. I still feel the same way about these issues, so I can’t say the experience of planning for my death was a waste of time. Here are my nine values as I wrote them in 1998:
  1. To know the fullest and most complete truth about my medical condition and prospects.
  2. To have an opportunity to find peace, understanding and closure at the end of life.
  3. To receive all reasonable and appropriate comfort care measures when I am terminally ill, and to be kept clean, dry and warm.
  4. To NOT be maintained on ventilators or other physically invasive therapies unless they offered a reasonable chance of restoring me to a better state of health and functioning.
  5. To not be a severe, prolonged caregiving burden to my wife or family. If I become so, I would want them to consider alternative placement.
  6. Otherwise, I would like to be at home to the greatest extent feasible during a life-threatening illness.
  7. If I lose the ability to communicate or interact with and to recognize my loved ones (such as from advanced Alzheimer’s disease), I would not want medical measures to prolong my life, even antibiotics. But in the meantime, I would like full comfort measures and to be housed in a comfortable nursing facility with a rich activities program.
  8. I do not believe in and would not want euthanasia or assisted suicide, unless my suffering was obvious, extreme, relentless, long-lasting and untreatable. In that case, I would appeal to my family’s best judgment.
  9. Most of all, I want everyone involved in my care to be as honest and realistic and reasonable as they can be.
What instigated me to begin this journey of advance care planning at a young age and prior to personally experiencing serious illness? Find out in Completing my own Advance Directive—and Living to Tell the Tale Part 3 of 3. (Scheduled to be featured Friday March 11, 2011)


Please consider sharing your experience to help the public understand the importance of advance care planning.

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Completing my own Advance Directive—and Living to Tell the Tale

Part 1 of 3 by Larry Beresford

When I set out to do my own advance directive, I obtained the standard documents from the organization that pioneered the living will back in 1967. I also sought out and obtained the California Natural Death Act Declaration form, my HMO’s advance directive package and the “Five Wishes” document. Then I made a date with my partner, Rose, who I was planning to marry.

We met at a North Beach coffeehouse to sit and talk about my feelings about medical care at the end of my life. Rose, who had come straight from her special education classroom in the neighborhood, wanted to know why these kinds of treatment decisions should be so fraught for people, although I assured her that in the chaos of the ICU, they often were. But in the end, she said she could be a tenacious advocate for my values. I had seen her temper and I knew how determined she could be when she thought it was important.

The next morning, I kept an appointment with my HMO primary care physician. We talked about my father’s recent, seven-week stay in a Kansas hospital for complications from cancer surgery. Like the six wise men of Hindustan who went to meet the elephant, none of his multiple physician specialists, each in charge of a different internal organ, had been able to speak for his overall medical state or propose a sensible care plan for my father as a person.

After a long course of treatment that felt fruitless to our family, he chose to go home with hospice care for the final 36 hours of his life. My doctor said in cases such as his, there is a need for a strong general internist to step in, negotiate between the specialists and advocate for the patient’s wishes, which she tries to do for her patients. She asked me to send her a copy of my completed advance directive and we both agreed that I should get more exercise and lose some weight.

I also spoke with some experts around the country and reviewed the 1998 public opinion poll, “The Quest to Die with Dignity,” by American Health Decisions, which documented that Americans believed it was important to plan for the end of life but were reluctant to actually do so. 

The experts I spoke with agreed that the living will, which is more of a laundry list of desired or unwanted treatments, was less useful than the Durable Power of Attorney (DPOA) for health care decisions, which empowers someone else to speak for me at the moment of truth. They also said the formality of completing a legal form was less important than the process of considering, clarifying and talking about my values. The larger conversation should happen with loved ones multiple times over months and years.
Bud Hammes, director of medical humanities at Gunderson Lutheran Medical Center in La Crosse, WI, suggested to me that the process could greatly benefit from a professional guide. But I thought that might be easier to find in La Crosse, which had become the advance care planning capital of the world. He also said it’s important to list what you would want in such situations, not just what you don’t want, for instance, a religious rite or a mechanism for family members to express their love and concern. I pictured a Cajun accordion trio playing mournful ballads at my bedside as my respirator was turned off.

In the end I went for the DPOA and named Rose as my agent, but it still felt incomplete. So I decided to write an addendum which will be featured in Completing my own Advance Directive—and Living to Tell the Tale Part 2 of 3 by Larry Beresford.  (Scheduled to be featured Wednesday March 9, 2011)


Please consider sharing your experience to help the public understand the importance of advance care planning.

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