We have recently heard from a number of voices grappling with these tough questions.
Tonight, Jeffrey Brown looks at a high-profile case in the Northwest.
BRITTANY MAYNARD: I can’t even tell you the amount of relief that it provides me to know that I don’t have to die the way that it’s been described to me that my brain tumor would take me on its own.
JEFFREY BROWN: Brittany Maynard’s video has thrust the issue of end of life decisions back into the national spotlight.
The 29-year-old has terminal brain cancer, and, last spring, doctors gave her six months to live. Instead, she’s decided to die on her own terms, November 1.
BRITTANY MAYNARD: I hope to enjoy however many days I have left.
JEFFREY BROWN: And her online video has been viewed more than seven million times since last week.
BRITTANY MAYNARD: I will die upstairs in my bedroom that I share with my husband, with my mother and my husband by my side, and pass peacefully with some music that I like in the background.
JEFFREY BROWN: Maynard and her husband moved from California to Oregon to utilize the state’s death with dignity law. It allows her to take lethal medication prescribed by a doctor.
The Oregon law, which calls this aid in dying, has been around since 1997, and since then, more than 750 people have used it to end their lives. All told, only Oregon, Washington and Vermont have laws allowing the practice that’s sometimes referred to as doctor-assisted suicide.
Court decisions in Montana and New Mexico have also authorized it, but those rulings have not yet been codified into law. The nonprofit group that posted Maynard’s video, Compassion & Choices, is working to expand the option of death with dignity in more states.
Maynard’s husband and other relatives also appear on the video supporting that right.
DAN DIAZ, Maynard’s husband: Between suffering or being allowed to decide when enough is enough, it just to me makes — it provides a lot of relief and comfort that, OK, that option is there.
JEFFREY BROWN: But there’s also opposition. Last week, three disability groups issued a joint statement against new legislation. They argued that — quote — “Not every terminal prognosis is correct. Not everyone’s doctors know how to deliver expert palliative care.”
The debate comes just weeks after an Institute of Medicine report found there is not enough open dialogue about end of life care in the United States.
And we have our own conversation now with Barbara Coombs Lee, president of Compassion & Choices, the group dedicated to expanding end of life options that is now working with Brittany Maynard. And Dr. Ira Byock is director of the Institute for Human Caring of Providence Health and Services, a palliative care physician, and author of the book “The Best Care Possible.”
Barbara Coombs Lee, let me start with you.
Why do you think the case of Brittany Maynard is resonating with so many people? What’s the key to this for you?
BARBARA COOMBS LEE, Compassion & Choices: The key is how Brittany has made dying real, made the tragedy of decline, the inhumanities that people suffer often before their disease takes their lives.
I think there was a lot of denial — there is a lot of denial in America. Americans find it hard to believe they will die. And if they will die, they find it hard to believe it wouldn’t be peaceful like it is in the movies.
Brittany is bringing that reality home to people. Gee, this could be me, it could be my mom, my dad, my daughter who has a horrible diagnosis. We’re all grief-stricken. And what this disease will do to her, could do to her before she dies may be just too much for her to bear.
JEFFREY BROWN: And, Ira Byock, you argue that people are taking the wrong message from Brittany Maynard?
DR. IRA BYOCK, Providence Institute for Human Caring: Well, we’re in a situation in which, as the Institute of Medicine says, there’s truly a public health crisis that surrounds the way people are cared for and the way people die.
My heart goes out to Brittany Maynard. It’s a heart-wrenching story. But I want to assure the — our people watching that she could get excellent whole person care and be assured of dying gently in her bed surrounded by her family.
It’s ironic that we know how to give extremely good care, not only comprehensive medical care, but tender, loving care. But it shows — as the Institute of Medicine report shows, we’re just not doing it in this country. And it really is a national disgrace.
JEFFREY BROWN: But, Dr. Byock, why not give her that power to do it herself?
DR. IRA BYOCK: You know, are I think that we know that there are serious deficiencies. The Institute of Medicine in 1997 documented some of the same deficiencies it just reiterated.
Doctors aren’t being trained. They are demonstrably, as a group, not well-skilled in communicating with patients, in treating their suffering. We know that our hospitals and our nursing homes are poorly staffed and skilled in hospice and palliative skills.
And so we could fix this situation. We know how to do that, but we’re not doing it. And giving doctors now authority to write lethal prescriptions fixes really nothing, none of the deficiencies in practice or medical training. It’s really a socially dangerous thing to do.
JEFFREY BROWN: Barbara Coombs Lee, a socially dangerous thing to do. In other words, it might work in one individual case for Brittany Maynard, but, expanded, it doesn’t make sense, is the argument.
BARBARA COOMBS LEE: It makes sense for a lot of people.
And I think that I agree with Dr. Byock. And he knows that I do. Hospice and palliative care is the gold standard. It’s wonderful. But it’s not a miracle. And it cannot prevent the kind of relentless, dehumanizing, horrific decline that Brittany faces, where her disease will cause unending seizures and headaches and nausea and vomiting and pressure in her brain, and the loss of every bodily function, including thinking and moving.
Brittany is achieving an enormous amount of comfort and peace of mind right now. You can see it in her face. She has that peace of mind because the disease has controlled her since January. And now she will control it. No palliative care, no terminal sedation or promise of effective palliative care can give Brittany the thing that she treasures now, the hope of gaining control over her disease before it takes her life.
JEFFREY BROWN: And, Dr. Byock, when you do get to an individual case, whether it’s Brittany Maynard or any individual, in Oregon, I understand that there are protocols, right? There are — there are — there’s a system set up to make sure that it’s done correctly, that the person is cognizant and so on.
Are those not enough?
DR. IRA BYOCK: They’re certainly not enough.
And they’re just the beginning. You know, Oregon’s law was modeled after Holland and Belgium. And in Holland and Belgium these days, people are being euthanized, by their own volition, of things like depression or ringing of the ears, not just pain.
You know, Compassion & Choices actually sold to the public the legalization of physician-assisted suicide because of unremitting pain. But we can control pain. What’s happening now is that over 85 percent of people who use Oregon’s law and end their life do so because of existential or emotional suffering, feeling of being a burden to their families, feeling the loss of the ability to enjoy life, feeling the loss of meaning.
Well, once those become criteria, there are a lot of problems and human suffering that then becomes open to assisted suicide and euthanasia. It’s an undeniable fact that the slippery slope exists.
JEFFREY BROWN: Well, let…
DR. IRA BYOCK: So, I think that doctors are proscribed from killing patients for protection of vulnerable people and the public. And that’s a good principle to maintain.
JEFFREY BROWN: Let me ask Barbara Coombs Lee that.
That is the clear slippery slope argument, and it raises the question of who decides. Who has the ultimate decision here?
BARBARA COOMBS LEE: I think anyone observing this story understands — and it is clear — Brittany is in charge. And Brittany is emblematic of every person who has used the Oregon law and will use the Oregon law.
Yes, she has emotional issues. Her emotional issues are her sense of being trapped and being a victim of her disease. And she’s overcoming those emotional issues by gaining control. She also has medication that she could take to ensure a peaceful, a humane death for herself and, yes, a peaceful experience for her family as well.
Her family wouldn’t have to watch her seizing or stand at her bedside for weeks on end while she is in a semi-comatose state or stuporous and dying very slowly.
You can call those emotional issues and denigrate them as though they don’t seem important. But they’re really about the very tender, bittersweet, poignant moments and intimacy between Brittany and the people who she loves at the most important time of her life.
JEFFREY BROWN: All right.
BARBARA COOMBS LEE: I agree with the question. What does it harm? Why not give her that hope? It helps her and harms no one.
JEFFREY BROWN: Very brief last word, Dr. Byock, please.
DR. IRA BYOCK: I think — I think Brittany could have that — those same poignant movements and tenderness with hospice and palliative care.
I think, unfortunately, while not being coerced, she’s being exploited by Compassion & Choices, as well as by the media’s insatiable appetite for sensationalism. And I think that’s a tragedy.
JEFFREY BROWN: All right.
DR. IRA BYOCK: I worry what will happen is she — her life still feels worth living on November 1. Will she then feel compelled to end her life in order to meet the public’s expectations?
I really worry for this woman who is vulnerable and going through a wrenching time in life. And I — frankly, I wish her all the best.
JEFFREY BROWN: All right, a very large discussion.
Thank you both very much. Ira Byock and Barbara Coombs Lee, thank you both.
DR. IRA BYOCK: Thank you.
BARBARA COOMBS LEE: Thank you.