What’s ignored in aid in dying debate

As of Friday, it is again legal in California for doctors to help their terminally ill patients to die.

The controversial 2015 legalization of medical aid in dying was in effect for almost two years before it was ruled unconstitutional on May 25 by Riverside County Superior Court Judge Daniel A. Ottolia. Friday’s reinstatement of the law, while the appeals process plays out, is another twist in the increasingly dramatic fight that goes to the core of what Californians want when it comes to choices at the end of life.

The End of Life Option Act went into effect two years ago on the heels of an emotional campaign highlighting the life and death of Brittany Maynard, a young woman dying of brain cancer.

Suddenly it was legal for doctors to provide life-ending medications to certain terminally ill patients who requested them.

This new option initially struck many of us physicians as anathema to our professional ethic. But it is hard to argue with a law that 65 percent of Californians support. And so many institutions and physicians proceeded urgently to develop processes and infrastructure to care for patients requesting this option, whether that meant full compliance with the act or “opting out.”

This recent legal back and forth is an opportunity for our state to further clarify what services should be provided to patients approaching the ends of their lives.

I am a physician who practices palliative care in a public hospital in Oakland. Along with many of my colleagues, I was struck by the contrast between the public outcry for access to medical aid in dying and the collective shrug when it comes to access to hospice and palliative care.

Palliative care is a relatively new medical sub-specialty focused on mitigating the suffering that so often accompanies serious illness, particularly at the end of life — physical symptoms as well as emotional burdens and spiritual challenges. It also works to restore the autonomy and dignity that is often lost in our default interventionalist approach.

At the core of palliative care lies the principle that patients must be treated as whole and complex beings, with unique preferences and goals to be elicited through honest and skillful communication. And yet this type of care is still woefully underused in our health care system. Only a fraction of the people who would benefit from it actually receive it. Or even know about it. And yet it is shown to be immensely effective at mitigating the suffering that can occur at the end of life.

Data from Oregon — where aid in dying has been legal for more than 20 years — indicate that for every 200 people considering the option, only one actually ingested the lethal medications. About half changed their minds after receiving better symptom management, more support for quality of life, and attention to their concerns. To me, this demonstrates that the real need being expressed is not so much about wanting to die as it is about being supported to live life well.

Whether or not this law is ultimately reinstated permanently, we need to make sure that we are providing every citizen with an assurance that she will be treated with respect and compassion as she approaches the end of her life. Very few people will ever end their lives with medications provided by a physician. But almost everyone will one day benefit from aggressive pain and symptom management, compassionate attention to concerns, and support for their loved ones.

We need to make it a state, indeed a national, priority to get people the medical services that will enable them to thrive during this vulnerable time. And that is hospice and palliative care. Where is the outcry?