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A Personal Look At Death With Dignity

September 15th, 2014

Kate, second from left, with friends from the dance world

Kate, second from left, with friends from the dance world

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 this blog 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.

Kate and her supporting friends on October 26th, 2013

Kate and her supporting friends on October 26th, 2013

“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 one final choice—how we die.  For Kate, spreading love and knowledge before exercising her Death With Dignity rights was that choice.

Walk For Hope And Cures This September

September 1st, 2014

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Lace up your tennis shoes and step out with Seattle as we walk to bring hope to people challenged by life altering illness. Every week offers an opportunity to support research and lift awareness for a wide range of conditions: Breast Cancer,  ALS (Lou Gehrig’s disease), Alzheimer’s, Lupus, Parkinson’s disease, Brain Cancer, Huntington’s disease, Gilda’s Club, AIDS, Sickle Cell Anemia and other causes.

The Annual Sickle Cell Walk at Seward Park kicks off the busy month. Opening ceremonies start at 10 a.m. with the 2.6 mile walk at 11 a.m. Bike events and a barbeque fill out fundraising celebration sponsored by Seattle Metropolitan Sickle Cell Task Force. See the website for start times of other events. Money raised supports scholarships that benefit individuals with Sickle Cell disease,  a 4 day summer camp for kids and advocacy efforts. Adult registration is $30.00. “It has been 100 years since the discovery of sickle cell disease, and there have been some advancements, but much more work needs to be done,” said Ken West, Task Force President, in a story about living with the condition. You can help by attending this event. Approximately 2 million Americans are affected by Sickle Cell Anemia.

The second weekend is September is the busiest of the month with walks for ALS, Lupus, Huntington’s disease, Parkinson’s disease and Gilda’s Club all in motion.

Team Hope Walk and 5KRun for Huntington’s research will start at Warren G Magnusson Park at 8 a.m. on the 13th. This is a local event coordinated with national fundraising  for Huntington’s Disease Society of America.  Huntington’s Disease, a hereditary condition causing degeneration in motor function, cognition, and mental balance, often strikes people in their 30′s or 4o’s but can express itself in childhood or much later in life.

The Walk To End Lupus NOW starts at 9 a.m. at the Seattle Center also on the 13th. Lupus, an autoimmune disease, affects approximately 1.5 million Americans.

Seattle’s Gilda’s Club’s 1st Annual Red Door walk/run also starts at 9 a.m on the 13th at Cal Anderson park. The Capital Hill club, which provides a place to “come as you are” to people living with cancer in Seattle, hopes to raise $25,000 with this event. Seattle, can we raise more? The funds support free support services for their 6,000 Washington members and the new red door lifts awareness of the need for cancer resources.

The Walk To Defeat ALS at Seward Park raises money for local patient services and the national ALS Association’s research and public policy activities. Check in at 9:00 a.m for a walk at 10 a.m. This year’s walk  joins the Ice Bucket Challenge in lifting awareness of ALS which touches a life every 90 minutes. ALS, a fast moving neurodegenerative disease affects nerve cells, muscles, and the spinal cord.

The Optimism Walk kicks off at noon on Sunday, the 14th, at Seattle University park. The 25$ registration comes with a t-shirt, snacks, and beverages. Money raised supports research, education, and outreach for the American Parkinson Disease Association. Approximately 30,000 people live with Parkinson’s in the Pacific Northwest.

Seattle takes aim at Cancer and Alzheimer’s the weekend of September 20th with the kick off to the Susan G Komen 3 day event to support breast cancer research, the 7th Annual Brain Cancer Walk, and the Walk to End Alzheimer’s.

The Susan G Komen 3 day 60 mile walk is the most ambitious participant event scheduled in September and funds raised, since its inception in 1982, have helped to produce remarkable progress. Walk proceeds also fund breast cancer screenings and financial support for men and women struggling with the condition or trying to pay medical bills.  Breast Cancer risk increases with age and can impact both men and women. 12% of American women will be challenged with breast cancer in their lifetime.

Registration for The Seattle Brain Cancer Walk starts at 7:30 a.m. at Next 50 Plaza at the Seattle Center on September 20th. 100% of the proceeds benefit Pacific Northwest Brain Cancer patients and research efforts. Early registration is $25.00 Though aggressive adult Glioblastoma tumors often grab attention because they strike suddenly in the prime of life, brain cancer is the second leading cause of death, behind Leukemia, in children.  Nearly 70,000 people learned they had brain tumors in 2013. Brain cancer accounts for 1.4% of all cancers but 2.4% of all cancer deaths.

The 2 mile Walk to end Alzheimer’s starts at 9:00 a.m. Saturday the 20th of September at South Lake Union Park. The walk generates money locally for the national Alzheimer’s Association. 1 in 9 people over 65 years of age have Alzheimer’s. Approximately 150,000 individuals in King County live with Alzheimer’s or Dementia.

The Seattle AIDS walk closes out this month of fundraising. Locally, more than 7,000 people are living with AIDS. Nationally AIDS affects 1.1 million. AIDS, an auto immune disease, develops gradually and weakens the body’s defense system.  Though medication has advanced and is enabling longer lives recent discoveries show that HIV can express earlier in life than previously learned and will re-emerge even after long term retro-viral therapy. We’re still searching for a cure. For more information, watch this detailed discussion on the latest developments in AIDS research from the 2014 International AIDS Conference or visit Lifelong, producers of the Seattle AIDS walk.

Walk for cures. Walk for awareness and education. Walk for neighbors, families and friends. Step into the new season with a walk for hope.

Innovative Cultural Enrichment For Early/Mid Stage Dementia At Seattle Day Program: Elderwise

August 18th, 2014

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Does spiritual essence stay the same despite physical or cognitive changes? That’s a deep question, isn’t it? We may wonder things like this when faced with serious physical decline or a loved one’s advanced dementia. How can we reach someone we once knew? Sandy Sabersky, founder of Elderwise, Seattle’s innovative day program for people living with early to mid-stage dementia, based her program on certainty that essence does stay the same. Programs are geared to access wholeness and essence through intuition, imagination, and inspiration. That core philosophy, called “Spirit Centered care,” drives the unique and nurturing day program and its exciting community partnerships.

Don paints amaryllis

Don paints amaryllis

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Caregiver’s Day Off Program Assists Parkinson’s Family Caregivers

August 12th, 2014

Are you a family caregiver for someone living with Parkinson’s Disease? Do you know about the “Caregivers Day Off” program? Caregiver’s Day Off, sponsored by the Washington Chapter of the American Parkinson’s Disease Association, serves families coping with Parkinson’s in King, Pierce, Snohomish, Skagit, and Island counties. With A Little Help is proud to be one of three local home health agencies trusted to support and serve Parkinson’s family caregivers through the program which sponsors 20 hours of free professional care annually.

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Lower Your Risk of Memory Loss Through Brain Fitness

August 1st, 2014

Dementia strikes an alarming number of people in King County. According to a King 5 report, in late 2012, over 150,000 people locally have Alzheimers or Dementia. King County’s population was just over 2 million in 2013. That’s an incidence of approximately 1 in 7 which is why most of us know someone who has dementia or someone who worries about memory loss. Medicine is still trying to understand how to delay, halt or predict dementia. We can’t cure it but we may be able to reduce our risk up to  50% by taking physical and mental steps toward more robust health. Read the rest of this entry »

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