Resources for discussing our end of life choices Jim deMaine, MD     

“The Conversation Project”: http://theconversationproject.org/ Video by Trudy James: www.speakingofdying.com Respecting Choices: http://www.gundersenhealth.org/respecting-choices Gathering people to talk about death over dinner: http://deathoverdinner.org/ Hospice and Palliative Care: http://www.nhpco.org/about/hospice-care

Advance directive resources  http://endoflifewa.org/advance-directive/ (formerly Compassion and Choices) This is the most comprehensive Advance Directive which includes your values, wishes, Living Will and appoints your Durable Power of Attorney for Health Care  https://www.wsma.org/advance-directives - 2 separate directives: the Living Will and the Durable Power of Attorney for Health Care  Five Wishes: http://www.agingwithdignity.org/forms/5wishes.pdf/

Books, Memoirs, Essays  Being Mortal: Medicine and What Matters in the End - Atul Gawande, MD  The Conversation: A Revolutionary Plan for End of Life Care - Angelo Volandes, MD          

When Breath Becomes Air - Paul Kalanithi, a Neurosurgeon nearing death Your Medical Mind - by Jerome Groopman a book about making difficult choices Die Wise - Stephen Jenkinson On Death and Dying - by Elisabeth Kubler-Ross, MD Making Rounds with Oscar - David M. Dosa, an unusual cat in a nursing home How We Die - Sherwin B. Nuland, classic by a Harvard surgeon Dying Well - Ira Byock, peace and possibilities seen by this Hospice MD Knocking on Heaven’s Door; the Path to a Better way of Death - Katy Butler Light in My Darkness - Helen Keller Does the Soul Survive: A Jewish Journey to Belief in afterlife, Past Lives, and Living a Purpose - Rabbi Elie Kaplan Spitz  Patient-Directed Dying, A Call for Legalized Aid in Dying for the Terminally Ill - Tom Preston, MD  On My Own – Diane Rehm, moving story of her husband’s Parkinson’s and decision to die

Websites & resources that you may find useful  http://jama.jamanetwork.com/article.aspx?articleid=2482307 – entire Jan. 19, 2016 issue of JAMA about end of life including pro and con about death with dignity  From the United Kingdom: http://dyingmatters.org/  Senior Services: http://www.seniorservices.org/  National POLST Foundation: http://www.polst.org/  End of Life Blog – www.endoflifeblog.com , stories by Jim deMaine, MD

 Register with 911 at www.smart911.com. Health and other information that you enter can show up on the dispatcher’s screen when you verify your phone. Available in all King County Zip codes (Also put health & contact information on your iPhone)  Individual consultation about end of life: www.trudyjamesheartwork.com  Tedx talk about Phyllis Schacter’s husband’s choice of VSED (Voluntary Stopping Eating and Drinking) - https://www.youtube.com/watch?v=tiYPaU3h3w8  Powerful rap video by ZDoggMD: https://www.youtube.com/watch?v=NAlnRHicgWs  Shared decisions in the ICU, a guide for medical providers - Jim deMaine, MD http://digitalcommons.hamline.edu/hlr/vol36/iss2/13/

Health Care Advocacy  Washington State Health Advocacy Association (WASHAA) is a nonprofit organization dedicated to promoting health advocacy in Washington State: http://www.washaa.org/  Washington State Long-Term Care Ombuds Program: www.waombudsman.org advocates for residents of nursing homes, adult family homes, and assisted living facilities.

Organ donation information  Which organs can be used & when?: http://www.lcnw.org/understandingdonation/organs-tissues-for-transplant/

Funeral Planning information  People’s Memorial Funeral Cooperative: http://peoplesmemorial.org/

An example of what one patient handed to me about their wishes for end of life care “I have a firm belief that there is a natural cycle of life, that death is inevitable, and that dying should be peaceful, comfortable, at home if possible, and without tubes, artificial nutrition or ventilator support. If I cannot carry out self-care, do not have my usual mental faculties, or have an incurable disease or intractable pain, please treat me with the best care for comfort but not invasive life support care. It is quite acceptable to withhold fluid and nutrition from me and treat me with a morphine drip as part of this care for comfort, letting nature take its course. Only in the acute and reversible situation (e.g. trauma) would I want heroic life support to try to get me back to my present state of good health. I have no wish to be a burden to my loved ones, or to spend resources and energy on heroic efforts to prolong my life when my life is at end. My worst nightmare is to spend my days in a nursing home with a feeding tube. Quality, not quantity, of earthly life is most important to me.” Note: This type of personal statement can be part of your Advance Directives to be copied and kept on file. Copies of your directives, including your POLST, are valid. Give copies to your DPOA, and store them where they can be found!