Former first lady Barbara Bush’s announcement that she was opting for “comfort care” in lieu of treatment for the chronic diseases that would end her life certainly got people’s attention.
And as someone who’s spent my career working on health care policy, I was grateful that one of her final acts was to share this deeply personal choice with the rest of us.
For more than a year, I’ve served as the executive director of the Visiting Nurse Associations or VNAs of Vermont, the trade group for non-profit home health and hospice agencies. And I’ve become well acquainted with the services our members provide to people with life-limiting conditions. But since it’s hard for most Americans to talk about death, I’ve also learned how much most people don’t know – or misunderstand – about the help that’s available.
One myth is that special services are only for people who’ve decided to stop treatment. Actually, services called “palliative care” focus on symptom-relief and the emotional and spiritual needs of individuals and their families. It’s available both to those receiving curative treatment – such as chemotherapy – as well as those who’ve decided to stop treatment.
And stopping curative treatment doesn’t mean stopping care. Instead, opting for “hospice” opens the door to a broad array of services delivered by a multidisciplinary team. Expert nurses foster comfort and dignity by managing pain and symptoms. A counselor might help a person complete a life review to come to terms with the end of life.
Families receive support that lets them focus on their loved ones. A volunteer might prepare meals, help clean the house or pick up kids from school. Families receive grief counseling, even after their loved one is gone. Studies show that caregivers who work with hospice teams experience less anxiety and depression and can return to their regular activities sooner after the death of their loved one.
A decade or so ago, my grandmother was very ill. When my mom turned down curative treatment on her behalf, an expert team helped my mom create a plan to treat my grandmother’s pain in her hospital room - where we all gathered to see her - and say goodbye.
Hopefully, Barbara Bush’s brave decision to publicly announce choosing what she called “comfort care” will enable more people to explore the many services designed to help us maintain comfort, dignity and peace through the very end of life.