Making Your Wishes Known at the End of Life

Tomorrow is Health Care Decisions Day! Follow the link to read a touching article on advanced directives in today's New York Times, and learn about how a living will can ensure that your end-of-life wishes are respected:
http://www.nytimes.com/2010/04/16/health/15chen.html?ref=health

Keith Oblermann Comments on Palliative Care

This may be a bit controversial. Keith Olbermann is an impassioned commentator. His perspective here is both personal and political. He did this piece on the eve of his father's death which coincided with President Obama's Health Care Summit meeting with Congress.

The video clip:

     http://videocafe.crooksandliars.com/heather/keith-olbermann-special-comment-my-father

Do you have an advanced directive?

National Healthcare Decisions Day is coming up on April 16th.
Do you have an advanced directive?  Do you know why you might want one?

     http://www.nationalhealthcaredecisionsday.org/

Here is a story about a PA hospice planning an outreach to the community:

     http://www.theprogressnews.com/default.asp?read=21889

And here is an informative excerpt from the National Healthcare Decisions Day website. The links don't copy over, so please visit http://www.nationalhealthcaredecisionsday.org/resources.htm directly.

What is an advance directive?

All adults can benefit from thinking about what their healthcare choices would be if they are unable to speak for themselves. These decisions can be written down in an advance directive so that others know what they are. Advance directives come in two main forms:

•A "healthcare power of attorney" (or "proxy" or "agent" or "surrogate") documents the person you select to be your voice for your healthcare decisions if you cannot speak for yourself.

•A "living will" documents what kinds of medical treatments you would or would not want at the end of life.

How can I learn more about advance directives/advance care planning?

The links below explore a variety of resources to help you make, discuss and document future healthcare wishes and decisions.

•AARP: End-of-Life Planning

•Aging with Dignity: Five Wishes

•American Bar Association: Tool kit for Health Care Advance Planning; 10 Legal Myths about Advance Medical Directive

•American Health Lawyers Association: Guide to Legal Issues in Life Limiting Conditions

•American Hospital Association: Put It In Writing

•Caring Connections: Advance Care Planning; Financial Information; Planning Ahead Checklist; Free Brochures

•Center for Practical Bioethics: Caring Conversations Workbook

Where can I get an advance directive?

Aging With Dignity (Five Wishes)

The Five Wishes document helps individuals express care options and preferences. The advance directive meets the legal requirements in most states and is available in 20 languages for a nominal fee. Order online or call 850.681.2010.

Caring Connections

Caring Connections offers free, state-specific advance directives for all 50 states and DC that meet the legal requirements for each state. Download individual copies for free or call 800.658.8898 to have a copy mailed to you.

Center for Practical Bioethics

Caring Conversations is a workbook to help individuals and families communicate with each other about their healthcare preferences and contains advance directive documents. These forms are valid in every state when notarized and signed by two witnesses. Download for free or call 800.344.3829 to order.

Project Grace

Project Grace offers a free Advance Care Planning Document that is legally valid in states that do not require forms to be notarized. Download for free, or call 877.99.GRACE to order a copy.

National Resource Center on Psychiatric Advance Directives

National Resource Center on Psychiatric Advance Directives offers general and state-specific information on psychiatric advance directives.

The Will to Live Project

The Will to Live Project provides state specific forms for designating an agent and stating healthcare wishes.

International Task Force on Euthanasia and Assisted Suicide

The International Task force offers a durable power of attorney document (in either multistate or state-specific versions) that expressly defines and prohibits euthanasia.

Organ Donation Choices: www.organdonor.gov or www.donatelife.net

State-Specific Resources (see http://www.nationalhealthcaredecisionsday.org/resources.htm )

End-of-Life Discussion

Harvard Medical School just hosted readings from Sophocles to faciliate a dialogue about end-of-life issues.  Audience members included hospice workers, med students, ethicists, MDs, artists, nurses, and more.

Issues raised include the following:

- Whether people have a right to "write their ending" - for instance, should people get to choose whether they die at home or in a hospice or a hospital? Or choose how much life-sustaining procedures they receive, especially when death is expected within hours or days?

- There can sometimes be a delicate dance among patient, family members, and care teams when balancing the requests of the dying patient with the emotional needs of the family, or the belief systems of family/patient/care teams.  For instance, what if the dying patient had a long-standing belief that they don't want to receive extreme measures of life support- but the adult children of the patient remember the strong, resilient parent who would have "fought against anything?"  What if the dying patient is in extreme pain and they are ready to accept the inevitability of their death, but the family want more time with him/her?  Whose wishes should the care team honor?
-How excruciatingly difficult it can be for family & care teams to witness and acknowledge the suffering of the patient/loved one.

- Some members of care teams talked about what an honor & privilege it is to help patients pass away while they are in their own home, instead of a hospital setting.
- Poignant lines from the Sophocles readings include a statement by the son of a dying man, who said, "I am pained by your pain."  This line was referred to frequently during the post-reading discussion.
- Another poignant line referred to the dying person's wish to be "seen" by their loved ones - a deep desire for recognition & acknowledgement.
- How some people in chronic or overwhelming pain refer to their pain in the 3rd person. The pain might be spoken of as "she" or "it" and sometimes the pain seems more than the person, as in "There is no more me, only it," referring to how the dying person no longer feels autonomous and is taken over by the pain.

- Some care team members discussed patients who ask for euthanasia treatments and whether they are denying themselves the 'gift' of self-discovery by consciously experiencing their dying process. What do you think?

- We briefly discussed how these complex end-of-life decisions can be further complicated by patients who are suffering from dementia and may be unable to understand what is happening to them.