THE BLOG
11/05/2014 01:46 pm ET Updated Jan 05, 2015

Brittany Maynard and the Search for Better End-of-Life Care in the U.S.

Brittany Maynard, a 29-year-old newlywed with an incurable brain tumor, chose to die with dignity at her home in Oregon this weekend. The manner of her death and her public discussion of her decisions have brought renewed attention to the right-to-die movement in the U.S. This has also, unsurprisingly, reignited the controversy surrounding a practice variously known as euthanasia, assisted suicide, aid-in-dying, and death with dignity.

Currently five states have laws allowing some form of physician-assisted suicide in the U.S. Though records are incomplete, it is estimated that only a small number of patients actually avail themselves of these rights. Where assisted suicide is not legal, terminally-ill individuals still seek assistance from physicians to end their lives through other channels -- through palliative care after ceasing to eat or drink, or through the use of morphine and other heavy sedatives that can render a patient unconscious until death. Regardless of the method, most of the patients choosing death with dignity are far older than Brittany Maynard and pass away much further from the public eye.

In bringing much-needed attention to the right-to-life movement, Ms. Maynard has also become the face of an impassioned and politicized debate in this country. Americans remain squeamish about end-of-life issues. The discussions we have had about advance directives and care-plans have quickly turned into debates about death panels and health care rationing. Since Brittany Maynard's death -- at home and surrounded by loved ones -- numerous posts and articles have been written about her decision, many referring disapprovingly to her "suicide."

The choice to die with dignity -- the choice that Ms. Maynard and others in the right-to-die movement have been fighting for -- should not be equated with suicide. Brittany Maynard was dying, dying far too soon and against her wishes. Cancer, above all, robs its sufferers of choices. For terminal patients, it steals the future, renders plans moot, and violate dreams. It inflicts violence on bodies, bodies which experience an ever-increasing spiral of indignities as systems are compromised and organs fail. Caregivers and loved ones bear witness to these processes, which, given the advanced state of modern medical technology, can be both protracted and painful. Like Ms. Maynard, most terminal patients do not want to be dying. But dying they are. In this context, death with dignity, in its attempts to minimize or avert suffering, has less in common with suicide than it does with pain medication or anesthesia. It is a small mercy we afford even to our pets, but -- at least in most parts of the U.S. -- deny our fellow human beings.

After three years of declining health, my mother died from metastatic breast cancer in February of 2010, a few months before her 50th birthday. Like Brittany Maynard, she died at home, surrounded by family. Unlike Brittany Maynard (but like much of the U.S. population) she did not have access to assisted suicide. While I cannot say definitively that my mother would have chosen that option, the experience of caring for her during the last few weeks of her life made me realize that, were I in her position, I would. Despite how much my mother wanted to see her children grow up, get married, and have children of their own, despite her teaching career, despite the love she shared with her husband of 27 years, terminal cancer was just that: terminal. An end of her life and all the things that she loved. Death with dignity doesn't cause death, it merely allows patients who are dying some measure of control over a situation in which their agency has already been severely compromised.

Death for many of these patients -- especially those who are younger or otherwise healthy -- can take weeks or even months. Death, though inevitable, can come on slow feet. I held my mom's hand during the last two weeks of her life as her body slowed to a stop. I watched as her eyes sunk, and applied lotion as her skin grew papery with dehydration. My family and I emptied her catheter bags, administered her medicines, and applied wet sponges to her mouth after she could no longer drink. We counted her heartbeats and sat beside her as her breaths grew shallower and more labored, the thin bones of her sternum standing out in stark relief beneath her nightgown. Caring for her was the most profoundly intimate act of my life, an experience for which I will always be grateful. But that last painful week, after she slipped into a coma, after her breathing began to rattle, after she became far less than the vibrantly alive woman who had mothered me my whole life, I wished desperately for an end to her suffering.

At the same time, I desperately wished for more time. But I wanted more time with my mother -- my chatty, frenetic, joyous mother -- not a pain-ridden shadow trapped in a failing body. Cancer took her away from me. Death with dignity would have simply allowed my mother, as it did Brittany Maynard, to spare herself and her loved ones prolonged and needless suffering. To dictate when and how she would depart. To preserve her own humanity to the last. Everyone in her position deserves that choice.

The choice for death with dignity should not be seen as existing in a vacuum, but as a part of a larger package of interventions and options available to everyone, not just the terminally ill. We should encourage the early writing of living wills, advanced directives, and conversations about priorities for end-of-life care. When an individual's health begins to fail, we should extend the availability of quality palliative care, and discuss Hospice early with patients and their families. But when death is imminent and inevitable, we should also allow patients the right to exercise agency over their own mortality: the opportunity to dictate when and how they die.

Technology has made great strides in extending life, and in diagnosing life-shortening illnesses. How we spend the time left to us, especially in the context of terminal disease, is a matter of personal choice. As a matter of policy, however, an individual's ability to exercise her own autonomy at life's end should be protected. Like my mother and so many other terminal patients, Brittany Maynard did not want to die. But death came anyway. Should we find ourselves in a similar position, we all deserve a chance at the kind of death she chose for herself.