Dying With Dignity: When Patients Want to Write the Final Chapter of Their Story

Katherine Morris, MD

Katherine Morris, MD, had only been practicing for 3 years when Cody Curtis asked her to prescribe lethal medication so that she could die on her own terms.

“[It] was a pretty challenging event for me,” Morris said in an interview with Oncology Nursing News. “While it was a law that I voted for twice and was comfortable with, it was more of a challenge when she asked.”

At the time, Morris was a practicing surgical oncologist in Oregon, where the Death with Dignity Act legally allows physicians to prescribe lethal medication to adult terminally ill patients. Morris had been treating Curtis for a year and a half when her cancer recurred. When Curtis was told her cancer was terminal and she only had 6 months to live, she asked Morris for help.

“I discussed it with my family…and decided this is what she really wanted,” Morris said. “I was her physician and it was incumbent upon me to help her and so I did.”

Oregon’s Death with Dignity Act was a citizen’s initiative that was first passed in November 1994 with 51% in favor. Implementation of the law was delayed by a legal injunction. When the injunction was lifted in 1997, a measure asking Oregon voters to repeal the Death with Dignity Act was placed on the general election ballot. Voters rejected the ballot, making Oregon the first state to allow physicians to prescribe lethal medication to terminally ill patients.

Since then, death with dignity has gained acceptance in four additional states, through laws (Vermont and Washington) and court decisions (Montana and New Mexico). And while death with dignity never faded into the background, a recent initiative by a 29-year-old terminally ill cancer patient has put a spotlight on the controversial practice.

Young Woman’s Choice Goes Viral

Last week, Brittany Maynard launched a viral online video campaign to raise awareness for death with dignity campaigns nationwide. The video, which quickly received millions of views, was put together with the help of Compassion & Choices, a nonprofit, end-of-life advocacy group and shows Maynard expressing her reasons for wanting to end her life on her own terms.

“I can’t even tell you the amount of relief 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 will take me on its own,” Maynard says in the video.

Maynard was diagnosed in January 2014 with brain cancer. She underwent surgery but an MRI reveled that her cancer had worsened, and she would only have about 6 months to live.

Maynard, along with her husband and her family, moved from California to Oregon in order to take advantage of its Death with Dignity Act.

“I don’t wake up everyday and look at it, it’s in a safe spot and I know it’s there when I need it,” Maynard says about the lethal medication. “I plan to be surrounded by my immediate family . . . and my best friend. And I will die upstairs in the bedroom that I use with my husband . . . and pass peacefully.”

Since the law was passed in 1997, a total of 1173 Oregonians have had lethal prescriptions written for them, and 752 patients have died from ingesting these medications, which is usually an oral dosage of a barbiturate. Of those 752 patients, 78.9% had malignant neoplasms.

Being There to Listen

Morris says patients are willing to talk about death; physicians and nurses just have to be there to listen.

“What I have found with my patients, no matter what stage of the game they’re in, they will tell you what they want to talk about and most of them are comfortable talking about how [they will] die if we’re telling them there’s not a curative option,” Morris said.

Helen Foley, MSN, RN, AOCNS, a member of the Clinical Faculty at the Frances Payne Bolton School of Nursing at Case Western Reserve University says nurses are on the frontline when it comes to palliative care.

“As oncology nurses, we kind of walk an interesting balance between supporting patients in their decisions and helping them see the big picture,” Foley says.

But there’s still a lot of work that needs to be done in order for nurses, doctors, patients, and their families to feel comfortable talking about death and dying.

“We need to be coaching families to talk to each other,” she says. “In the oncology world, we really need to talk to patients and families about what they want and give them a realistic picture about what medicine can do.”

Foley says it is important to ask patients how they want to live, but while all nurses are palliative care generalists, it is a skill to be able to talk to someone about death.

“These conversations are very difficult to have,” she said. “Oncology nurses need to own this, they need to develop their skills—especially in conversations around goals in care . . . it’s an ideal role for the oncology nurse.”

Nicholas L. Gideonse, MD, an assistant professor of family medicine at the Oregon Health & Science University, says the states that were early adopters of Death with Dignity, “really forced a better conversation with end-of-life, palliative care, and hospice care in general.”

“I think in some ways the discussion of, ‘how much do patients value autonomy? So much that they might consider physician aid in dying,’ drove us all towards better standards of palliative care,” he said. “These things work together, a patient’s pursuit in aid of dying is not devaluing in anyway the work of really good palliative care. It enhances it.”

Morris says that in her experience, the patients are extremely eloquent and ready to talk about death.

“I’ve really learned that patients, in a way, are almost more realistic about our limitations in the medical field than physicians are, and I think that all of my patients are very eloquent in telling me what helps them, what they want, what their goals are, you just have to ask them,” said Morris.

Gideonse makes it clear that many of the patients entertaining the idea of ingesting lethal medication have been battling the disease for a long time and have come to terms with their situation.

“I ask almost every patient at some point in the conversation, ‘if we were to have the magic wand to cure . . . would you still be pursuing hastening your end?’ And they all say ‘of course I would not, I greatly value and enjoy life, but that’s not the situation I’m in, I have a terminal illness and I can feel my decline and that’s what I’d like to avoid,’” Gideonse said. “They’re fighters but they’ve reached a point that it feels futile and they want to be able to write at least the final chapter of their story.”