By Jim Towey
This year, Aging with Dignity’s advance care planning program – Five Wishes – will have its 25th birthday. Little did Eunice Kennedy Shriver and I know when we introduced the national version of Five Wishes at the National Press Club in downtown Washington in October 1998 that it one day would be America’s most popular living will and health care agent form, available in 30 languages, and in the hands of more than 40 million Americans.
Eunice went home to God in 2009 but her legacy, and Mother Teresa’s encouragement and inspiration at the founding of Aging with Dignity, carry on. I am proud that Five Wishes has helped educate and empower millions of Americans to engage in the important discussions about end-of-life care and how a person wants to be treated when he or she cannot speak.
Real stories, real challenges
Over the years, the stories we have heard from those whose loved ones used Five Wishes have been compelling and heart-warming. It is worth noting that in the quarter-century since we began selling Five Wishes, the $5-per-single-copy price has never changed. Never. Name another product or service that has not gone up in price since 1997. Our mission to get Five Wishes – and Five Wishes discussions – embedded in the mainstream of American life has succeeded beyond our wildest dreams.
And yet, the silver anniversary of Five Wishes comes at a time when advance care planning faces new, existential threats. This is not alarmist rhetoric. This is reality. When the COVID-19 pandemic began, hospitals and health and long-term care systems, with the permission of the federal government, suspended these important discussions, and now seem to have lost interest in protecting patient access to end-of-life information.
Getting it wrong?
A recent guest essay in the New York Times went further and challenged the wisdom and efficacy of advance care planning. The column was written by a pulmonary and critical-care physician at Brigham and Women’s Hospital in Boston. She related the story of a patient who went from previously refusing artificial respiration in times of necessity, a decision formalized through an advance directive, to later wanting extraordinary care after all. The author, Dr. Daniela Lamas, wrote, “I want advance care planning to work. I want to believe that advance directives – written statements of a person’s wishes about medical treatment – can be completed when someone is relatively healthy and offer doctors and family members a clear road map in the event of serious illness.” But Lamas then went on to question her belief, given the fluidity of circumstances and discussions that occur during times of critical illness, and her experience with her patient.
I think Dr. Lamas drew the wrong conclusions from what took place. Lamas’ patient had not only filled out an advance directive but discussed it with family members. That’s a huge win – nearly four out of five adults don’t take that step. The patient also changed her mind – another feature of patient self-determination that is vital. Indeed people frequently order a new Five Wishes to update their thinking and preferences. That is commendable. Plans evolve. People change with life circumstances. That fact doesn’t argue against advance directives and appointing a health care surrogate – it argues for physicians spending time laying out options with patients and their families, learning their wishes, and following them.
The Journal of the American Medical Association published a piece by a palliative care specialist (which Lamas cited) questioning whether advance care planning leads to better outcomes for patients. Questioning effectiveness is fair game. But the more important question in cases where patients are denied their wishes is: why did the health care system not deliver what the dying persons asked? Why weren’t their wishes followed?
I will write later about the troubling trends in health care settings that undermine or deny the right to patient self-determination – a federal right enshrined in a 1990 law. The voice of patients should be louder, not muzzled. If there are shortcomings in the current system that deprive patients’ rights of self-determination, then doctors, nurses, health care providers, and others must work together to fix them.
Aging with Dignity will spend its silver anniversary advocating for patient rights, as we have done from our founding. Mother Teresa and Eunice Kennedy Shriver stood on the side of the poor, elderly, disabled and others who often have their voices and wishes disregarded. Five Wishes, and those brave individuals educating people on their rights under the law, are needed now more than ever.