27 May Barbara Bush: End-of-Life Care Decisions
Former first lady Barbara Bush had been in declining health for several years. Just days before her death at age 92, we read that she was seeking “comfort care” for her terminal conditions of congestive heart failure and chronic obstructive pulmonary disease. Comfort care translates to preventing or relieving suffering, providing the best quality of life possible and respecting the dying person’s wishes. No Hail Mary efforts to try to extend her life; rather, Mrs. Bush chose to spend her final days peacefully at home with her family.
Growing controversy about patient wishes for end-of-life care
Mrs. Bush’s announcement came at a time of growing controversy about documenting and fulfilling patient end-of-life wishes. We wrote earlier about Washington state’s new guidelines for dementia patients being allowed to die if they are refusing food. While many patients identify their wishes for not being kept alive by artificial or extreme measures, that’s not always the reality. Even those who create an Advanced Healthcare Directive and a DNR order and make sure their doctors and family understand their wishes, there can be a disconnect. The medical staff who treat these patients are trained to save lives–not let them die. And it’s not unusual for family members, acting on behalf of their loved ones, to ignore those wishes, keeping them alive at all costs.
A national effort to define and document patients’ wishes
There’s considerable momentum behind efforts to define and document patients’ wishes before they’re placed on costly medical interventions aimed at prolonging what is a low quality of life. Ellen Goodman is co-founder of the Conversation Project, an organization that encourages families to discuss and document their end-of-life preferences. She applauded the Bush family announcement: “This forthright, outspoken woman has made her wishes known and the family is standing by her.”
Bush’s was a personal decision that she didn’t have to share, but it may encourage others to think about their choices, talk about them with their families and document them, with the confidence that they will be honored.
Dr. Haider Warraich, a fellow in cardiovascular medicine at Duke University Medical Center and author of the book “Modern Death,” also applauded the Bush family for putting the phrase “comfort care” into the public sphere so that other people can consider it “a viable option at the end of life.” But Dr. Warraich is concerned that the term comfort care is misunderstood, that it involves stopping medical treatment, which is not the case at all.
Comfort care may also be described as palliative care
Palliative care focuses on managing patients’ symptoms to keep them comfortable, helping them retain their dignity. They are not being denied medical treatment. For heart-failure patients, for example, comfort care generally means opting not to use a breathing machine or CPR, but patients continue to receive medical treatment, including diuretics to remove excess fluid from their lungs.
A real-life experience with palliative care
My own experience with palliative care involved my 72-year old neighbor, Marian. She was always healthy and active and took good care of herself. Her doctor had been treating her for acid-reflux disease for two years. Sadly, her doctor should have been treating her for pancreatic cancer, and her new medical team gave her six months to live. A very practical person, Marian went about making arrangements and putting her life in order. Her sister and brother-in-law arrived from the UK, and we made a little bucket list of simple, fun Bay Area things to do that would be easy for Marian. Unfortunately, Marian’s disease didn’t give us time to actualize any of our plans. Within a month, she was in terrible pain and losing weight. She was weak and her skin began to turn yellow.
Marian had no interest in any kind of heroic efforts to prolong her life
Marian soon needed a more skilled level of care, so her family enlisted the services of hospice. In this case, it was a woman named Angela. For the last two months of Marian’s life, Angela, the gentlest person I’ve ever met, spent long hours with her. They would talk, listen to music, or just sit quietly, sometimes holding hands.
Angela was an extraordinary comfort to Marian, providing increasingly strong doses of morphine to make Marian’s last days as comfortable as possible. She died peacefully in her sleep. Comfort care was the way Marian chose to live the last days of her life. Angela’s final act was to leave little handwritten notes informing us of Marian’s death. I can’t say enough about the great work of this organization.
Have you talked with your family about end-of-life care?
Our Living Trust package includes an Advanced Healthcare Directive and Power of Attorney. Contact California Document Preparers at one of our three Bay Area offices today to schedule an appointment today. Our dedicated team is helpful, compassionate and affordable.