In Part 1 I explained why Baby Boomers, now in our 60s and caring for parents in their 80s and 90s, are going to change the way we think about end of life care. Part 2 is about how we begin.
Each person should have the chance to decide when it is time to shift from health care toward a cure to health care for comfort and pain management, as many doctors choose to do for themselves. That means giving us and our families the information and support they need. Death is not quick and simple, like in the movies. Just as they have learned to do with childbirth, health professionals need to learn to talk to patients and their families about what to expect. That knowledge provides reassurance and a sense of control. It is more important than any advanced directive or pain relief.
I have seen a friend insist on hospitalization for his 96-year-old father, who had severe dementia and intractable pain and could neither understand nor cooperate with treatment. My friend said no four times when doctors suggested he put his father into hospice because, "I promised my mother I would not let him die." He thought he was doing what his parents wanted. Not many of us would choose that for ourselves, and we need to let the people we love know while we can.
Some initial efforts are confusing, even intimidating. A long check-list of choices about end of life asks us to project ourselves into choices no one can predict accurately. But important changes are happening now and other promising initiatives are on the horizon.
- The "slow medicine" movement pioneered by Dr. Michael Finkelstein encourages health care workers to talk to patients about their goals, to treat the person, not the disease. As Dr. Shoshana Ungerleider wrote in Vox:
My patients have all taught me valuable lessons about what a "good death" might look like. Each one has reminded me that there is more to medicine than placing a line to monitor the heart, or performing an intubation. Just because more tests and procedures exist does not mean that we should perform them all each time. Sometimes the most powerful healing of all comes through the simple act of sitting and listening to our patients with compassion.
We know that 75 percent of Americans would prefer to die at home. Only 20 percent actually do. We also know that 80 to 90 percent of physicians would not want CPR or mechanical ventilation at the end of life. Doctors actively choose to forgo the suffering that takes place in our ICUs, because we've seen it and we know better. My goal is to close this gap, to educate my patients about their options based on open, honest communication. I no longer see death as a failure but as a place we are all headed at some point -- and if I can help someone live the fullest to the very end, I have practiced the best medicine.
- A small town in Wisconsin is pioneering end of life conversations. Sarah Kliff writes in Vox that, "La Crosse has, over the past three decades, done something remarkable: Nearly all its residents have a plan for how they want to die." Even though consultations about end of life wishes are not paid for by insurance or (until 2016) Medicare, the health care practitioners of La Crosse made it as regular a part of treatment as flu shots and questions about allergies to medication.
When patient preferences are known -- as they almost universally are in La Crosse -- people tend to select less aggressive courses of treatment. And this is what has earned the La Crosse model so much praise: it's shown a meaningful reduction in health spending as a side effect of respecting patient wishes.
- California has followed Oregon, Washington, and Vermont in adopting "right to die" legislation. Patients who have been certified by two doctors as being within six months of death (at least one of those consultations in private to prevent coercion) and meet other criteria for autonomy and capacity will be able to choose to end their lives as they wish. As the Washington Post noted:
[Oregon] collects data on each case, and there have been no reports of coerced or wrongly qualified assisted deaths. The typical patient is about 71, suffering from terminal cancer, well-educated, with health insurance and enrolled in hospice. About one-third of prescriptions were never used, suggesting some terminally ill people are comforted by knowing they have an alternative to extensive suffering should they need it.
- As of Jan. 1, 2016, Medicare now covers consultations with physicians about end-of-life wishes. Contrary to Sarah Palin, these are not "death panels." The choices are all with the patient, not the government. Possibly even more significant, Massachusetts Blue Cross has now extended coverage for these discussions as well and other insurance companies are expected to do so as well. These are opportunities for patients to hear what the options are, decide for themselves what they want, and give their directions to the doctors who will be treating them. Unsurprisingly, these consultations themselves are a key factor in increasing the comfort level of people at the end of life because gives them a sense of control and closure. It is similar to the transformation of childbirth in the 1960's and '70s, giving women and their partners better information and more opportunities to create the experience they wanted for themselves and their babies. I like Katy Butler's suggestion of a "Medicare Part Q." It would "make the transition smoothly from useful curative approaches to those focused on sustaining my quality of daily life, to 'comfort care only' and, I hope, a gentle death at home."
- Hospice and palliative care specialties are becoming more widely available and better resources for people approaching the end of life and their families. The arbitrary "within six months of expected death" standard is increasingly being replaced, allowing a patient to decide when to shift from medical treatment for cure to medical treatment for comfort and pain management. The U.K. is setting the standard for the rest of the world with about 30 percent of dying people receiving hospice services, many of them dying at home, as they wished.
- The eco-burial movement provides alternatives to the toxic materials that have traditionally been used in embalming and caskets.
- There is a new specialty called "death doulas," people specially trained to help those at the end of life and their families. Like their counterparts, the birth doulas, they understand how to provide support, counseling, and treatment. Friends and family members can serve as "death walkers" for those they love. This description of a granddaughter's last hours with her grandmother is beautiful:
My sister and I sat on the bed with her for many hours the last week of her life. I would rub her hands, wash her face with a warm cloth, sing to her, tell her some of my favorite memories and sometimes simply hold the quiet space as she slept.
- Former columnist Ellen Goodman has developed The Conversation Project to help families discuss end of life issues. She writes:
The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death. I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it. And so I never want to leave the people I love that uneasy and bewildered about my own wishes. It's time for us to talk.
Talking about the end of life is scary. Not talking about it is worse. We need changes and the baby boomers are our best shot for making them. I am trying to have that conversation with my parents and am determined to have it with my children. As Atul Gawande says, "the ultimate goal is not a good death but a good life -- all the way to the very end."
For more on these issues, see my Death Stories blog.