Death With Dignity vs. “Redemptive Suffering” - The Legacy of Brittany Maynard

On January 1 of 2014, 29 year old Brittany Maynard got the kind of nightmare diagnosis we all fear: her rapidly worsening headaches were symptoms of astrocytoma, a deadly cancer that had invaded her brain. Given six months to live, Brittany rocked the country by announcing her intention to die on her own terms.

People Magazine interviewed her, and Brittany posted a Youtube video explaining her decision. The video got 12 million views, and tens of thousands of people followed the final weeks of her life. Most honored her courage. Others called her weak, or pleaded with her to change her mind. Some conservative Christians condemned her to hell. Brittany was unwavering. Despite ever more debilitating headaches and seizures, she checked off her “bucket list” including trips to Alaska’s Tongass, Washington’s Olympic rain forest, and the Grand Canyon. On November 1, after a final walk in the woods with family, her dog, and her best friend, she wrote her final words on Facebook and drank the lethal prescription she had held since summer. She fell asleep in five minutes and died peacefully about half an hour later, surrounded by the people she loved most.

Months earlier, Brittany’s husband Dan Diaz and her mother Deborah Zeigler had moved with her to Oregon, where Brittany would have a legal right to manage her own dying process. Family members spent the summer and fall of 2014 savoring their last precious months together and supporting Brittany as seizures became more intense and frequent and her body started to fail.

But not every family can afford to quit jobs and move across the country to support a dying loved one. If death with dignity is to become available equally to all, not just a privileged few, laws will have to be changed state by state. Brittany’s family has set out to do just that. Dan and Deborah are partnering with Compassion & Choices, a national nonprofit that advocates for aid in dying and provides both information and support to affected families.

Washington State, along with Oregon and Vermont, has passed legislation that may serve as a model for the rest of the country, and Robb Miller is the Executive Director of Compassion & Choices of Washington. In this interview he discusses the Maynard case, how the Oregon and Washington Death With Dignity laws work, and some challenges faced by those who want the freedom to manage their own dying process.

Valerie Tarico: I understand that—like Brittany Maynard’s family—you too became a death with dignity advocate because of personal experience.

Robb Miller: Back in 1994 my long-term partner was diagnosed with AIDS and proceeded to die 18 months later. Unfortunately his death, even though he was on hospice, was very difficult. There was a lot of suffering involved and the suffering couldn’t really be managed. It was very difficult, and during the entire period I was thinking, there has to be a better way, there has to be a way to allow someone to decide when enough is enough. He had said to me and his family that when he couldn’t walk anymore that he wanted to die. And when that time came, I asked his hospice provider, “Isn’t there something we can do to honor his wish? Can’t we provide medication he can take to end his life?” And the hospice said, ”No, we don’t do that. We’re an organization that neither hinders nor hastens the dying process. And we can’t provide any information about that.”

Later on I found out that Compassion & Choices of Washington existed even before the passage of the Death With Dignity Act in 2008, and they could have provided information to us about options he had that would have helped him not have such a prolonged and miserable dying process. And so I felt very betrayed after the fact, when I found that out.

Tarico: I know so many people who say, “I’m not afraid to be dead, but I am afraid of the process.”

Miller: The whole idea is having control, in a situation where everything is out of control. It’s the illness that rules your life. It’s the illness that takes away your ability to enjoy the things that you used to enjoy. Just giving someone the means to say, Ok, I’m ready to go, and I want to go now. This is when and how and who I’m going to die with, provides such peace of mind to people. It’s sort of like insurance, if you will. In 2013, 173 people got medication and 119 took the medication. It’s like .2 percent of the people who die in Washington. Between a quarter and a third of the people who go through the entire Death With Dignity process, even acquiring the medication, end up not taking it. So it’s less about ending suffering at the end of life than it is about having control and peace of mind.

Tarico: With baby boomers aging, questions about quality and choices at the end of life are looming large. But Brittany Maynard and her family took the conversation to a whole new level.

Miller: Yes. She and her family were very outspoken, and her story created a stir in several ways. The fact that Brittany had to move from California to Oregon pointed out the disparity in where people have the option for a peaceful death and where they don’t. Almost seventy-five percent of Americans think that doctors should be allows to help patients end their life by some painless mean, and now a majority of physicians (54%) also support this choice. But only five states protect the right to aid in dying: Oregon, Washington, Vermont, New Mexico, and Montana.

Tarico: I understand that the legislation in Washington and Oregon may serve as a model for other states. How do these laws work?

Miller: In Washington and Oregon the laws are very similar. A person must be terminally ill and mentally competent, with a prognosis of 6 months or less to live. Two doctors must be involved, one who prescribes the life-ending medication and another, called the consulting physician. Both physicians must confirm the person’s diagnosis, prognosis and capacity to make an informed decision. The person must make 2 oral requests separated by 15 days and a written request witnessed by 2 qualified witnesses, followed by a 48 hour waiting period. Then they can get a prescription. They can either get it filled or leave it on file at a pharmacy to be filled at a later date should they choose.

At Compassion & Choices we help people find physicians willing to participate. We make sure people know their other end-of-life options. We can also have a volunteer present at the time of death to make sure medical protocol is followed and to support family members and other loved ones who are present. There is no charge for those services. This isn’t something you can initiate when you are at death’s door. When you find out you have a terminal diagnosis is a good time to get in touch with us. We get many calls from people when it is too late—the person isn’t going to survive the mandatory waiting period or they are too sick to go to the doctor. In those situations, we try to help in other ways, for example by providing information about VSED (voluntary stopping of eating and drinking).

Tarico: I know that companion animals—and wild animals too—when they get close to death often stop eating and drinking. But you’re talking about an up-front decision?

Miller: People have been doing this for centuries. It’s natural to eat and drink less as death approaches. Choosing to stop prolonging the dying process by stopping eating and drinking can result in a peaceful, humane death. Symptoms can be managed with good palliative or hospice care. Depending on a person’s health status when he or she starts, it can take anywhere from a couple of days to a couple of weeks. It’s a matter of allowing a natural death—of not prolonging the natural dying process. Widow Phyllis Shacter did a powerful TEDx talk about her husband Alan’s decision to stop eating and drinking.

Tarico: It’s legal? Do people have the right to do this?

Miller: Yes, legally people have the right to not have food and water forced on them, it is a matter of bodily integrity, but not everybody knows that. For example, a 90 and 92 year old New Mexico couple were kicked out of their assisted living facility when they told a caretaker that they had decided to stop eating and drinking. Again, one challenge to patient autonomy is corporations owned or controlled by the Catholic Church. For example, PeaceHealth Whatcom Hospice in Bellingham, Washington, refused hospice services to a man with Alzheimer’s who voluntarily stopped eating and drinking to avoid the ravages of the disease.

Tarico: The people who oppose this . . . Have they never felt unbearable pain or seen someone whose body or mind is failing? How can they say, “I think the law should deny you the right to manage your own body?

Miller: Well, when I was working on the Initiative 1000 Campaign, the Washington Death With Dignity Act, what I came to realize in debates and editorial board meetings with opponents is that really, opposition is primarily religious in nature. There is some opposition from people who have philosophical or professional reasons for opposing the choice, but really, the primary opponent to Death with Dignity is the Catholic Church.

In the case of Brittany Maynard, the family was united in supporting Brittany’s choice, but they felt attacked by the Church. Archbishops in several states issued public statements opposing Brittany’s decision, both before and after her death.

The Catholic hierarchy’s “Ethical and Religious Directives for Catholic Health Care Services” states that Catholic institutions may never condone or participate in aid in dying or Death With Dignity in any way, stating that dying patients who request euthanasia should receive medical and spiritual care necessary so that they can live with dignity until the time of natural death. The Directives also say “since a person has the right to prepare for his or her death while fully conscious, he or she should not be deprived of consciousness without a compelling reason,” and “Patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.”

Tarico: Ok, I have to interrupt, because that’s just plain scary. According to Merger Watch, independent hospitals across the U.S. are being bought by big Catholic healthcare corporations. When these merger deals happen, the bishops impose the Religious Directives that you just described on providers and patients whether they are Catholic or not. So, instead of sedation and death with dignity we should all learn to “appreciate the Christian understanding of redemptive suffering”?

Even the phrase “redemptive suffering” is deeply disturbing. We’ve all heard stories of medieval monks or Opus Dei performing self-flagellation, like in the Da Vinci Code, which seems more than a little twisted. But it’s 2015, last I checked, and most people who work in or get services from Catholic controlled hospitals aren’t even Catholic. Most of us think that compassion means helping people and other animals not to suffer. There’s a story that Mother Teresa told one dying man to think of his pain as the kiss of Jesus, and he said, “Tell him to stop kissing me.”

Miller: One of the greatest barriers to Death with Dignity is Catholic health care facilities. A fellow in palliative medicine surveyed our client support volunteers in Washington and Oregon and asked about barriers. Catholic controlled health care was listed as the Number One barrier. Sixty percent said that hospice was undermining patient choices, which lines up with the fact that more than half of hospice programs are now Catholic controlled.

Tarico: My primary work is helping young and poor women get access to better birth control, and—not surprisingly—there are lots of parallels. Church control of healthcare is becoming a big barrier for women who want top tier family planning like IUD’s and implants or tubal ligations. The Catholic systems won’t stock the supplies or provide training for their staff. In Washington State, Catholic Corporations like Franciscan and Providence—they call them “ministries”—now own or control almost half of hospital beds along with associated outpatient clinics and doctors’ practices. People say, “If you don’t like it, go somewhere else”—but in many communities there’s nowhere else to go. And poor working people get hit the hardest because many can’t afford the time off, childcare, and transportation to get their healthcare farther from home.

Miller: The American Congress of Obstetricians and Gynecologists has been very unhappy. Today about half of tubal ligations occur in a hospital right after a woman gives birth, but Catholic hospitals are denying this service, making patients schedule a separate surgery later, which violates best medical practice standards. Nearly half of women denied a tubal ligation had an unplanned pregnancy within 12 months.

Tarico: What exactly do the Catholic facilities do to stop patients from getting aid in dying?

Miller: Some religiously affiliated systems have policies that prohibit or discourage referrals or even conversations. A client with Providence Hospice of Snohomish County who was denied information about the option of Death With Dignity climbed into his bathtub, put the barrel of a rifle in his mouth, and pulled the trigger. Another man in Centralia ended his life violently after he was denied information. As of result of this tragedy, Providence Hospice recently loosened up their gag rules, but all Catholic providers maintain certain restrictions around Death With Dignity. For example, no Catholic providers will refer patients directly to Compassion & Choices of Washington, the only statewide organization that provides meaningful assistance to people who want the option of Death With Dignity.

Even if patients get information, another issue is that as Catholic corporations absorb independent practices, fewer and fewer physicians are able to participate. There are whole regions in Washington where it is almost impossible to find a provider. Yet another way they are limiting patient choice is by suppressing competencies in medical providers. If medical students and allied professions are training in facilities that don’t offer procedures that Catholics disapprove of, then it affects the curriculum. Doctors may not feel comfortable doing procedures that they have not been trained to do or that they have not had any experience doing.

Tarico: I’m surprised that professional physician groups aren’t fighting for the right of their members to practice medicine free from religious interference. Where is the AMA in all this?

Miller: Not very helpful. This is the organization that opposed mandatory warnings on cigarette packages. They opposed Medicare. They have been on the wrong side of many issues over the years.

No professional groups have defended the right of providers to say whatever is best for their client. In Washington State, the Department of Health has said that providers such as hospice nurses and social workers have a protected right to offer information, but they aren’t required to provide it. In other words, the provider has a right to provide it but the patient doesn’t have the right to receive it.

Tarico: For those of us who think that individual men and women should get to make decisions about their own bodies, what is the solution to this kind of religious interference in personal decisions?

Miller: We’d like to see legislation to protect providers that provide the standard of care that is scientifically verified and medically accurate. Another option is shining light on policies that deny patients options or even full information. In Washington, the governor took action that resulted in hospitals being required to post their policies on the Department of Health’s website. A patients’ rights group is evaluating those policies and will post their evaluation. People want information. They want to make their own informed decisions. Brittany Maynard’s decision to go public resulted in a flood of requests for information both nationally and here.

Tarico: Where should people go for more information about death with dignity, either for themselves or because they want to help end the disparities and ensure access for all?

Miller: Contact Compassion & Choices or one of our local affiliates like Compassion & Choices of Washington or call our office, (206) 256-1636, or (877) 222-2816 toll-free. You can join our mailing list on the website.

Tarico: And I know that those who want to follow the work of Brittany Maynard’s family can find news online (here, here, here) or can sign up for updates or to take action in their own state.

Any last words? For this interview, I mean?

Miller: When you withhold information from people you harm them. When you decide that you can make the decision for them, you’re saying you know what’s best for them. When you impose your religious beliefs on someone who doesn’t share them, that is a form of moral and spiritual violence.

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Valerie Tarico is a psychologist and writer in Seattle, Washington. She is the author of Trusting Doubt: A Former Evangelical Looks at Old Beliefs in a New Light and Deas and Other Imaginings, and the founder of www.WisdomCommons.org. Her articles about religion, reproductive health, and the role of women in society have been featured at sites including AlterNet, Salon, the Huffington Post, Grist, and Jezebel. Subscribe at ValerieTarico.com.

Robb Miller has been executive director of Compassion & Choices of Washington since 2000, and serves as a steering committee member of the Washington End of Life Consensus Coalition, sponsored by the Washington State Medical Association. In 1994, Robb’s long-term partner was diagnosed with AIDS and the following year, his father was diagnosed with terminal cancer. His experience caring and advocating for his partner and father — from their diagnoses until their deaths — made him an activist for better end of life care and expanded choice at the end of life.