"Death with Dignity" and Brittany Maynard's Legacy

The real issues surrounding physician-assisted suicide and end-of-life care.

Posted Nov 04, 2014

On November 1, a young woman named Brittany Maynard ended her life with a fatal dose of medication, legally prescribed by her doctor. It was her way of wresting control from a terrible disease that had taken over her life and made her dying a slow, debilitating, painful, and excruciating journey.

Just six months ago, she had received a diagnosis of an aggressive and incurable brain cancer. She was given only six months to live, and her doctors duly informed her that the dying process would involve increasingly frequent and severe seizures, symptoms of stroke, brain swelling, and severe headaches and neck pain, along with distressing side effects of medication to control her symptoms. As a result of this dire prognosis, Brittany, her husband, and her mother moved from San Francisco to Portland to take advantage of Oregon’s physician-assisted suicide put into law by the Death with Dignity Act.

For most of us, committing suicide is difficult to contemplate and might seem impossible to carry out. You might question the wisdom of her decision and the morality of her actions. You may have religious objections and believe that no one should have the right to choose when or how they die.

Or you might wonder if, given similar circumstances, you too would end up taking that fatal dose. 

In an effort to make meaning out of her suffering and create a legacy, Brittany decided to go public with her disease, her dying, and her decision, posting a video that went viral. As a result of her candor, she has spurred greater awareness and ignited public discussions on this topic.

Death with Dignity

Death with Dignity laws have been enacted to address people’s fears of a long, painful, expensive dying process. If you're terminally ill, wasting away, and experiencing terrible suffering, why not end your life painlessly and quickly? Why rack up massive hospital bills in a futile effort to fend off imminent death? 

Along with Oregon, Washington & Vermont also have passed Death with Dignity laws, making physician-assisted suicide legal. In New Mexico, a recent court ruling upheld the right of terminally ill patients to end life on their own terms. And advocates in Montana defeated a bill that would’ve imprisoned physicians for honoring patients’ wishes for death with dignity. Many other states are wrestling with this issue in their courts and legislatures.

The Limits of Modern Medical Technology

We got in this pickle because life-saving modern medical technology advanced so much during the 20th century that it suddenly became possible to keep people alive past their expiration dates. In fact, ever since the 1950’s, it has been all too common for dying patients to be hospitalized and put on life support, even against their wishes, largely because physicians and society-at-large felt compelled to use this miraculous “life-saving” technology to prolong life at any cost. After all, prolonging life had been a focus of medical care for centuries. And not fully understanding the consequences, many patients and families insisted that doctors indeed “do everything” even when it was against best medical judgment.

Hospice Care to the Rescue

By the early 1960’s, health care practitioners, patients, and family members alike started questioning the futility, suffering, and expense of aggressive medical intervention for the terminally ill. People observed that intensive care units merely prolonged dying, but not living. Furthermore, many people found that intensive care did not allow them to close out their lives in a way that felt meaningful to them. And compared to simply allowing death to happen, intervening with intensive care often causes more pain and discomfort-- physical, emotional, and spiritual. Surely, there had to be a better way to provide end-of-life care.

Then in 1967, Dame Cicely Saunders founded the first hospice, which gave dying patients an alternative to an isolated, painful, protracted death in the ICU.

Hospice care focuses on increasing the quality of life rather than the quantity. It encourages and allows patients to live fully until they die. Invoking another centuries-long tradition, hospice makes it possible for people to die at home, with comfort and dignity, surrounded by their loved ones. 

Still, for the next few decades, there was no consensus on where to draw the line between hoping for a cure and "giving in" to death. Indeed, hospice is still commonly seen as “giving up the fight”.

In addition, physicians were unsure about and reluctant to address the intractable pain caused by some diseases (like cancer), even at the end of life. One problem was that repeated doses of morphine and other opiates could turn patients into “drug addicts,” which was considered an extremely pitiful and shameful way to go.  Another problem was that sometimes, so much morphine was required, patients would be rendered unconscious-- and sometimes respiration was hindered, hastening death.

But medical ethicists and clergy began pointing out that writhing in agony was dehumanizing and unnecessary. And key is the intent behind administering high doses of morphine. If the sole intent is to hasten death, a potentially lethal dose should not be prescribed by a physician. But if the intent is to control pain, prescribing a potentially lethal dose is justified, and the informed, consenting patient is willing to take the risk.

The bottom line is this: alleviating suffering is aligned with the physician’s oath to first, do no harm. And with the recently (2007) established medical specialty of palliative care, hospice is an even kinder and gentler option than it was even ten years ago. In fact, a number of research studies show that hospice patients tend to live longer than those who continue aggressive treatment. Several factors are implicated, including individualized care, avoiding the risks of aggressive treatment, and treating patients and their families holistically, with attention to physical, emotional, and spiritual pain. With overall better quality of life, is it any wonder that hospice patients can actually thrive under hospice care, instead of withering away in intensive care?

A Cultural Shift in How We View Death and Dying

Over the past few decades, with growing public awareness and education, there has been a cultural shift toward understanding that modern medicine cannot cure what’s incurable, and suffering through failed attempts at aggressive intervention is a terrible way to die. We consider the fact that there are fates worse than death. And thanks to pioneers like Elisabeth Kubler-Ross, we've reframed dying as an important phase of human development and an opportunity for personal growth-- for the terminally ill and the bereaved alike. Hospice is increasingly seen as a valued alternative where hope doesn’t disappear--it merely changes direction. With the support of hospice, we can go from hoping for a cure and long life to hoping to live fully during the remaining time and hoping for a peaceful death.

A Cultural Shift in Patient Self-Determination

In the olden days, doctors were considered to be in charge of their patients’ medical care, making important decisions for patients. It was even considered a kindness to not talk about death and dying with patients, and even keeping secret a terminal diagnosis.

In the 1970’s patients started standing up for their rights to be informed and make decisions about their own medical care.  In 1990, the U.S. Congress passed The Patient Self-Determination Act, giving patients the right to refuse aggressive medical intervention, even if it was potentially life-saving.

Now, no matter where you live, you can take charge of your destiny by filling out a legally binding advance directive, which outlines your medical treatment preferences and end-of-life wishes. By refusing such interventions as cardiac resuscitation, mechanical ventilation, feeding tubes, or hydrating IV’s near the end of your life, you’re aligning yourself with the medical research showing that these interventions painfully and unnecessarily prolong the dying process. When the body is shutting down, it is a physical burden to be resuscitated, ventilated, fed, and watered. Refusing intensive care and receiving comfort care is a way to let nature take its course and allow death to mercifully come when it calls.

Still, even with hospice care widely accepted, it is all too common for physicians to recommend intensive care, and for folks to request that maximum interventions be carried out for themselves or their loved ones. And in the absence of an advance directive, far too many dying patients are still admitted to intensive care only to endure the suffering of fending off imminent death.

The Role of Physician-Assisted Suicide for the Terminally Ill

The “death with dignity” movement addresses this persistent issue of aggressive intervention at the end of life. It promotes hospice as an excellent alternative to dying in a hospital’s intensive care unit. But what if hospice care can’t provide any semblance of quality of life or a peaceful death? Death with Dignity laws go one step further, proclaiming that each person should have the right to not only allow death to come when it calls, but also to hasten death in order to avoid any lingering, suffering, and expense.

When the Death with Dignity Act was passed in Oregon, naysayers predicted that euthanasia would become rampant. They worried that physicians would be required to offer fatal prescriptions,  that family members would have shady ulterior motives and push suicide on dying relatives, and suicidal people would see this a permission to get a lethal dose in the absence of terminal illness. However, research shows that none of this came to fruition, and in fact, in 16 years, of the 1173 patients who received a prescription, 36% never used it. And yet, having that option can be therapeutic in itself, offering peace of mind should the day come when death is most merciful and welcome.

Questioning Assumptions

For those who think hospice is fine but physician-assisted suicide is too extreme, be thankful that you have yet to encounter extreme circumstances.

If you presume to know that you would never choose physician-assisted suicide, entertain the possibility that you truly have no idea what you would choose if you should face a situation that entailed unbearable and intractable suffering. You can only imagine what you might do if you had to walk that journey.

For those who consider suffering as divine discipline, be careful what you wish for.

For those who are religious and believe God gave us intensive care to fend off death, remember that God doesn’t need an ICU to keep you alive. And perhaps God also gave us hospice care, so we could die with more comfort and dignity. So if you want to put God in charge of when you die, get medical technology out of the way and choose hospice. And by all means, don’t choose physician-assisted suicide if it goes against your values and beliefs.

For those who wonder what the world has come to, self-euthanasia has been around for centuries, and at times tolerated and even promoted. In Europe and the Middle East, it's been against the law and contrary to religious doctrine for the past 700 years or so, but lots of people can recall family stories about the feeble grandma who simply stopped eating when she entered the nursing home, or the failing grandpa who went for a walk in a blizzard and was found next morning. Current advocates simply want to make it more humane and dignified for those who choose this exit-- and for their loved ones. Taking a fatal dose at home in the arms of your supportive loved ones surely beats giving them the trauma of finding your dead body in a pool of blood or at the bottom of a cliff.

For those who question Brittany Maynard’s action, know that you have the right to self-determination, not the right to other-determination. Then imagine what it would be like if others had the right to determine your end-of-life decisions.

With death inevitable, Brittany wanted to have a hand in writing her last chapter, rather than having all of it written for her.

Whatever your beliefs, thoughts, and feelings about physician-assisted suicide, consider this perspective: Brittany was able to finish her life with a sense of self and purpose, with loved ones empathizing with her subjective experience and trusting her decisions. She refused to be a victim, and steadfastly remained the hero of her own journey.