McLean: Make end of life options real with palliative care
California’s recently passed End of Life Option Act has made aid-in-dying legal, but the state falls short in providing access to palliative care to all. 19 counties have no inpatient services, and 22 counties do not offer palliative care. As the right to autonomy in medical decisions is partly the cause of the aid-in-dying regulations being made legal, ensuring that patients have the best options available for pain management, symptom relief and treatment is vitally important. Excellent palliative care allows patients to make informed decisions about their quality of life and whether they wish to make use of the aid-in-dying facility. California’s legislature has taken steps towards making palliative care a priority, committing to study the status of palliative care and to provide better care for dying patients through the Senate Concurrent Resolution No. 117.
While controversy remains about California’s recently passed End of Life Option Act, we need to accept that aid-in-dying is now legal and that the state needs to support additional real options for patients—especially good palliative care with its focus on the whole-person and pain management.

Alarmingly, California falls woefully short in providing universal access to palliative care. Community-based palliative care is currently unavailable in 22 of our 58 counties; there are no inpatient services in 19 counties. Specialists in palliative care are in short supply and reliable funding is nonexistent. Most rural communities in the state have limited, or no, access to this vital service.

It is deeply troubling to offer aid-in-dying in the absence of universal access to the unmistakable benefits of palliative care.

Palliative care focuses on improving the quality of life for people with serious illness. It includes discussion of treatment goals, pain management, and relief of symptoms such as depression, shortness of breath, and fatigue. Without it, aid-in-dying may seem like the only choice rather than one of several reasonable possibilities for end of life care.

An ethical principle relied on by both proponents and opponents of aid-in-dying is autonomy. Autonomy is in play when we make our own medical decisions—choosing our doctor; choosing to stop taking an antibiotic despite doctor’s orders to empty the bottle; choosing physical therapy rather than orthopedic surgery; choosing to be an organ donor or not; and, now, under legally defined circumstances, choosing to die.

Supporters of this choice argue that this new life-ending option is merely an extension of our everyday autonomy, of our right to decide. “Why,” the argument might go, “since I have been responsible for deciding about my health my whole life, should I be denied the opportunity to make the final—and arguably most important—decision of my life, how and when to die?”

But if patients have unrelenting, unmanaged pain, can they truly exercise their autonomy; can they truly make a free choice to die in this way? If we want to ensure the autonomy of end of life choices, we need excellent, easily available palliative care, whose goal it is to relieve physical, psychosocial, and spiritual distress, treating the entire person.

The integrity of the physician-patient relationship is deeply rooted in our trust that physicians will work toward our health and well-being and that, when cure is no longer possible, they will accompany us in the dying process, providing comfort and relieving our pain through aggressive palliative care and the opportunity for hospice care.

These services enhance the quality of life, making possible thoughtful choices during debilitating illness and at the end of life. Lack of access to pain management—both physical and existential—through robust palliative care services ought never to be the sole driver of aid-in-dying.

The state Legislature took a giant step forward in addressing this shortfall in August by adopting Senate Concurrent Resolution No. 117, encouraging the state not only to study the current status of coordinated palliative care but also to develop solutions, tools, and best practices for providing better patient-centered care, improving both the quality and delivery of health care services.

As we continue implementing the End of Life Option Act, let’s first get the horse back in front of the cart by having palliative care available to every Californian.

Margaret R. McLean is the associate director of the Markkula Center for Applied Ethics at Santa Clara University and director of the Center’s Bioethics Program. She wrote this for The Mercury News.