By Betsy Weiss
National Healthcare Decision day is April 16 this year. This day celebrates our ability to direct our own health care even when seriously ill or unable to communicate. It is not your typical Hallmark holiday. You won’t get a card from your kids or your sweetheart. But there is no greater gift to those you love than the end of life conversations this day celebrates.
The Advance Care Planning Project, a collaboration between Methow At Home and the Okanogan Palliative Care Initiative, supports our community to promote this conversation and help individuals complete their Advance Care Plans.
The mission of National Healthcare Decision Day (NHDD), founded in 2008 by a Virginia lawyer who served on a hospital ethics committee, is “to inspire, educate and empower the public and providers about the importance of advance care planning.
NHDD is an initiative to encourage patients to express their wishes regarding health care and for providers and facilities to respect those wishes, whatever they may be.” Whether your decisions are directed by your faith, if you would choose the chance of life no matter the odds, or if you would choose to set limits to care, your choices can only be followed if you convey them to those making decisions for you when you cannot.
A special gift
I was blessed to have a mother who embraced conversations about end of life. We laughed about what she would wear to the funeral home (her most comfortable velour pants). She talked about what was important to say in her obituary (that she loved her dog, Roxanne). Both her parents lived long lives and adapted to aging well. But she watched her parents lose themselves, one from strokes and one from dementia. My mother lived a life of the mind. She devoured books. She came alive around a dinner table debating ideas. She listened intently as people shared their stories of who they were and what experiences had shaped them. She was very clear that if she lost her mind she wanted no efforts to prolong her life.
When my father died at 91, my mother came to live with us. She had been diagnosed with Alzheimer’s Disease a few years before. At that point she was reading and rereading the obituary page of the newspaper, but she could not tell us what she read. She watched old movies on the Turner Classics channel and could not tell us the plot but connected with the emotion on the screen. She had significant arthritis that limited her mobility. She was forgetting the people around her and could not dress or bathe herself.
On Thanksgiving she fell and broke her hip. I knew a fractured hip is often a terminal event for the elderly. She was too mentally impaired to be able to participate in a physical therapy program if she had surgery. She had said she did not want to go to the hospital for any reason. I told her we were thinking of keeping her at home and treating her for comfort. She said, “Oh good.” I then told her that if she did not have surgery it might shorten her life to which she scoffed, “Oh, that.” With the support of hospice we cared for her at home, played her favorite jazz and sat by her side. Without the conversations we had shared, I could never have made that decision. She gave me a gift.
Advance Care Plans
In the nation as a whole, 90% of adults have heard of Advance Care Plans, and 71% report they have thought about what they want if different health problems threaten their lives. Only 29% of Americans have an Advance Care Plan. In our death-averse culture, we rarely discuss what is important to us about our life and our death.
These conversations are as important for younger people as for older folks. The unexpected death of a young person who has not had the opportunity to speak to those who love them about what matters most to them in death miss an opportunity to provide a small bit of solace for their people. Or when an illness or event sweeps someone from our lives, young or old, those conversations about what gives life meaning create context for those who endure and can provide a bit of comfort.
In the last year, the Advance Care Planning Project has touched over 100 people in Okanogan County. Many of those people have completed an Advance Care Plan. Others are in the middle of the process. Others are having conversations with those who will be their decision makers if they cannot make their own decisions. We celebrate these conversations and accomplishments.
If you are interested in beginning a conversation, have questions about the process or are looking for a place to start please contact Methow At Home, 996-5844, sign up for a conversation with a facilitator the first Wednesday of every month on www.methowathome.org or email firstname.lastname@example.org.
Betsy Weiss is an internist who moved to the Methow from Maine in 2012. Throughout her career she volunteered as a community hospice medical director and in 2003 was in the first group of practicing physicians to become board certified in the specialty of Hospice and Palliative Care. Since moving to the Methow Valley she has volunteered with the Lookout Coalition, helped found and lead Methow At Home and has volunteered with End Of Life Washington.