02 Nov A Personal Look At Death With Dignity
Last October before our coworker Kate Lounsbury died of lymphoma she asked this blogger to write about her choice to use Washington’s Death With Dignity law to acquire legal aid in dying. Kate hoped it would promote wider public understanding. Before writing, I spoke with coworkers and friends and asked for their perspectives on Death With Dignity. Many had voted for Initiative 1000 which established the law with a 58.6% margin in 2008. All said they’d vote the same way again today. That was clear. But some expressed conflict about the actual act it legalized—aid in dying. Would I make that choice? they wondered aloud. How would I feel when someone I loved made that choice?! I think many people experience similarly unsettled emotions. Some are conflicted or opposed ideologically or because of religious faith. Complicating our feelings is the fact that death is rarely discussed in our culture and is hard to imagine. In that, Kate’s view differed from us all. She didn’t have comfortable distance from imminent death. She knew her life would end– painfully– and, understanding that, she was unwavering in her determination to choose the manner in which she left this world and her beloved friends behind.
“Most people want to know ‘did my loved one die peacefully?’” Midge Levy, a long time social worker, told me. Levy is the Vice President and Chair of the Community Education and Awareness Committee for Compassion & Choices of Washington, an organization that stewards Washington’s law, supports and empowers people at end of life, and advocates for the right to a peaceful, humane death. Kate did die peacefully. “Kate was in wonderful humor and went into her last sleep telling us that ‘it was all worthwhile,’” her partner told Kate’s circle of family and friends. “Death With Dignity allowed Kate to reclaim her life from the death cancer had in store for her and to make her death her own,” friend Cate Bell observed in an email. “For Kate it was the perfect option. All through her life, she faced significant obstacles with bravery and determination, and Death With Dignity allowed her to end her life in harmony with the way she lived.”
“The law brings comfort to family and friends. Loved ones have the option— a way out.” Levy said. For years in Washington, she explained, people who were terminally ill either experienced difficult deaths or found ways to end their suffering. Washington’s Death With Dignity “law makes this option available to the public at large. It provides a protocol about how to use it. Here we have a system set up. We have physicians writing prescriptions for medication we know that works. There’s support for the person electing the option and we’re recording outcomes. The law is working perfectly. There’s no obligation to use it. No one has not died,” Levy stated, addressing common concerns.
Washington’s Death with Dignity is a very narrow law with specific requirements. It takes time (at minimum usually three weeks) and energy to arrange required physician evaluations and find a participating pharmacy. “Doctors, pharmacists, and even entire health systems like Providence and Franciscan are permitted to opt out of participating in the law. This can make it difficult for patients to pursue aid in dying,” explained Robb Miller, Executive Director of Compassion & Choices of Washington. “Patients must be 18 or older, mentally competent, and have a terminal illness with a prognosis of 6 months or less to live. This rules out people with Alzheimer’s disease or dementia because by the time they become terminally ill, they’re no longer mentally competent,” Miller added. “Additionally, the patient must make two documented oral requests and submit a witnessed written request. Finally, one must be able to self-administer the medication and so must be able to swallow or push the medication into a feeding tube. These requirements and safeguards ensure that only qualified patients are able to use the law, but they also exclude a significant number of terminally ill people,” Miller concluded. In fact, Kate’s mother was unable to use the law because a stroke had taken away her speech and functionality. She succumbed to multiple myeloma shortly before Kate herself died.
Only four other states: Oregon, Montana, Vermont, and part of New Mexico have Death With Dignity laws or make it accessible through the courts. Bills are often introduced in other states but lawmakers rarely want to make decisions that could anger their constituency and issues of rights and choice can be flashpoints. Washington and Oregon’s laws were passed by popular vote through the initiative process thereby enacting law without the complexities involved in a House or Senate bill. About half the states in the U.S. have similar capability.
Kate was glad to live in a state that gave her the choice to die with dignity but, through her experience, she believed the law could do more. First: it doesn’t compel all medical professionals to tell terminal patients that they have the legal right to “aid in dying.” Kate didn’t hear about Death With Dignity or Compassion & Choices of Washington from her doctors or oncologists. She discovered them through her own research. Terminal patients are often referred to the services of hospice but their goal is to keep a patient as comfortable as possible while they die. They have no legal role in or ability to qualify their patients for Death With Dignity. A large majority of people that use Death With Dignity, Midge Levy said, find that hospice isn’t enough. “While hospice can generally manage patients’ pain and symptoms, they aren’t always able to do so,” said Robb Miller, adding “There are other forms of suffering, such as losing the ability to do anything you enjoy and losing one’s dignity or independence that no medication can address.” What do you think? Do doctors who inform patients that they have less than 6 months to live also have a professional obligation or obligation of conscience to tell the patient that he/she has a legal alternative to suffering through Death With Dignity?
Secondly, Kate said, having a Death With Dignity law isn’t bringing us any closer to discussions about living and dying. “It should be easier to get information about how the law relates to living,” she explained. “I feel like, in my situation, selecting the option opened some doors to talk about death.” It did. Kate’s friends and family members walked through those doors talking openly about her death and their feelings. They became important supports to Kate and to one another. In fact, the energized community that bonded around Kate’s decision is a remarkable outgrowth of her dying that’s helping everyone’s ability to cope and heal. The community was there in final days, on the day of her death, and in the days that followed. This October, a friend and fellow dancer, Deborah Birrane, will re-create six of Kate’s dances in memory of her successful early solo career in San Diego.
In the vimeo above, Birrane tells us she’s continuing to discover and be inspired by Kate’s life, “Early on in learning Kate’s dances via video. I remember shouting outloud, ‘Oh, Kate! Why aren’t you here to help!?’ and a moment’s pause before, oh yeah, you are….guiding and pushing us all beyond what we thought we could do.”
Death with Dignity isn’t suicide, Kate confided, addressing a perception and judgment she’d encountered in the process. The decisions when one is already dying, when there’s no longer a choice to live or die, decisions about managing final days, she said, are vastly different from the decision to end a still healthy life prematurely. Her testimony the night before her death transcended her words. Far from rejecting life, Kate transformed the profoundly disappointing turn of events, the sobering reality of last days, into an opportunity to create community and bonds of friendship. Death With Dignity as a law may not yet have taught us anything about how death and life inter-relate but Kate did. Her bold decisions and honesty became a catalyst for learning and insight. Her final days were about celebration of her life and acceptance of her death but they were also full of intentional preparation for the lives of family and friends who would live on. Through her profound generosity in final acts she continues to inspire and teach those fortunate to have known her and touch others as she’s honored in memory.
Kate was 1 of 12,390 people who died of cancer in Washington State in 2013. She was 1 of 175 in Washington who received life-ending medication last year and 1 of 119 known to have self-administered it. She fit the profile of people connecting with and choosing Death With Dignity: 77% have cancer and 84% are at home when they die. Kate elected the 26th of October to take the life-ending medicine. It could have been any day—her choice—and she could have changed the day. She could have received the medicine and not taken it but she did. A volunteer from Compassion & Choices of Washington provided instructions and support. Six loving friends were in attendance.
According to a study published in 2013 by the New England Journal of Medicine families of people who were granted aid in dying generally felt positive about their experience and were grateful for the option. Kate’s friends and family were no different. “The Death With Dignity process is very well thought out and designed to be respectful of all the parties involved, from the person making the choice to the medical community to the funeral home industry,” wrote Kate’s friend Cate Bell. “It is designed to minimize any mistakes. It is an empowering option for people living with fewer and fewer options as they near the end of their lives.”
When death is imminent most of us get one final choice—how we die. For Kate, spreading love and knowledge before exercising her Death With Dignity rights was that choice.