ADVANCE DIRECTIVES - YOUR MOST IMPORTANT DECISIONS

According to a Stanford study most physicians would choose a do-not-resuscitate status for themselves when terminally ill but would tend to pursue aggressive life-saving treatment for patients facing a similar prognosis. Creating an Advance Directive and appointing a Healthcare Agent are the two most important steps one can take to increase the likelihood of a GoodEnding. 

First some important distinctions. An Advance Directive (AD) is more than a DNR/DNAR (Do Not Resuscitate/Do Not Attempt Resuscitation), MOLST (Medical Orders for Life Sustaining Treatment) or POLST (Physician Orders for Life Sustaining Treatment). A DNR/DNAR is a blunt instrument that directs health care providers whether to perform cardiopulmonary resuscitation. MOLSTs and POLSTs are state-specific forms for people living with advance illnesses. They must be signed by a physician or other specified medical professional, increasing the likelihood that they will be adhered to. (National POLST provides detailed state-specific information.) Advance Directives are deeply personal documents. They can express one’s preferences both more broadly and in more detail than other forms. Electronic ADs can even include personal video messages. Ideally, an Advance Directive or Care Plan should:

Unfortunately, most Advanced Directives kick in when one can no longer communicate and thus may not apply to someone with dementia or Alzheimer’s. Yet, these conditions are likely to rob one of the ability to guide one’s care and alter one’s end-of-life preferences. If your Advance Directive does not include dementia and Alzheimer’s provisions, you can create a Dementia Directive and share it with those who might be involved with your care. A free Dementia Directive form can be downloaded from Advanced Directive for Dementia.

One huge caveat. No form or directive will guarantee that health care workers fulfill your wishes. There are many stories of patients who received aggressive treatment in a moment of crisis despite having a DNR and/or Advance Directive. Appointing a Health Care Agent/Proxy who knows your wishes and will strive to ensure they are adhered to is the best insurance for a GoodEnding.

Advance care planning requires evaluating trade-offs and making choices. We recently discovered a fun way to have “The Conversation”. Hello is a game that provides an easy and fun way to talk about living and dying and what matters most. Below are links to some especially good books, articles and videos that will help you think through your own end-of-life issues and/or help loved ones.

• The Art of Dying Well, Katy Butler 2019

• As The End Nears, Compassion & Choices’ webinar series about the dying process of several common diseases

• Letting Go: What Should Medicine Do When it Can't Save Your Life, Atul Gawande, The New Yorker, July 2, 2010

• Being Mortal, PBS Frontline, February 10, 2015

• How Doctors Want to Die, Stephanie O'Neill, Southern California Public Radio, August 11, 2015 

• Advice for Future Corpses (and Those Who Love Them), Sallie Tisdale, Touchstone, 2018

There also are many organizations that can help with end-of-life choices. Below are links to websites offering particularly useful guidance and resources for advance care planning.