Rural Hospice That Spurns Federal Funds Has Offered Free Care for 40 Years

Helping her father die at home “was the most meaningful experience in my nursing career,” said Rose Crumb. She went on to found Volunteer Hospice of Clallam County in Port Angeles, Wash. Dan DeLong for Kaiser Health News

 

[pullquote] The free services and four decades of expertise at the Volunteer Hospice of Clallam County are hard to beat. [/pullquote]

Jonel Aleccia for NPR shares the story of a unique and rare type of hospice care that can be found in Port Angeles, WA. Rose Crumb, a 91 year-old retired nurse, founded the Volunteer Hospice of Clallam County in 1978. Her commitment to the volunteer and donation-based structure for nearly 40 years has made the organization stand out in a sea of profit-driven, hospice corporations speckling the United States.

Crumb first found interest in easing the experience of dying people after reading “On Death and Dying” by Dr. Elisabeth Kübler-Ross when it was first published. Later, her father was diagnosed with lymphoma and Crumb found honor in helping him die at home. From then on, Crumb estimates that she has witnessed or helped ease the deaths of hundreds of people.

It is significant to point out the Volunteer Hospice of Clallam County accepts no federal funding or private insurance. They thrive on the work of 160 volunteers and just 10 paid staff. The organization has had its’ difficulties, especially in the early years, when volunteer hospices were not yet legally exempt from federal regulations. The legal fight to remain open with a small budget, volunteer staff, and flexibility of care was supported by the community and Rose Crumb’s son, a corporate lawyer. Recently, a corporate hospice moved in to the community and the competition has not deterred either organization. The free services and four decades of expertise at the Volunteer Hospice of Clallam County are hard to beat.

Port Angeles is a small, remote community in Washington State. The survival of this healthcare institution is inspiring. The citizens of Clallam County say they can keep better watch on the organization than federal regulations and that it wouldn’t be in operation today if there was neglect or abuse.

Today, Rose Crumb is in her 90’s and experiences some of the health problems with which she helped so many people cope. She says she is ready for hospice and has all her paperwork to ensure her death is how she wants it.

“Go Wish”: The Game that Sparks Important End-of-Life Discussions

[pullquote] The value of Go Wish lies in the consideration and
conversations that it intends to inspire. [/pullquote]

Dr. Jessica Zitter writes about the importance of sharing/teaching end of life information with younger
people. She has started to go into high schools to do this. Whenever I have younger people in my
audiences when I present, I make a point of talking with them afterward. They are quite comfortable
with the information. They don’t want people their families or friends to suffer at the end of life.

Go Wish is a card game that broaches difficult questions about end of life and what is most important to
the participants. Created by the Coda Alliance, a community-based, non-profit organization that
promotes the planning and preparation for the individual’s ideal death, Go Wish has a simple but
effective construct. Each card presents a statement related to end-of- life decisions and it is up to the
individual player to sort it into piles based on importance. For example, statements written on the cards
may include “To have my family with me”, “To have a nurse I feel comfortable with”, “To take care of
unfinished business with my family and friends”. The value of Go Wish lies in the consideration and
conversations that it intends to inspire.

Considering one’s own death is daunting, maybe frightening, and often avoided. However, Go Wish
encourages each participant to reflect on their own priorities and needs, and comfort zones. By openly discussing the topic, the intention is that participants will feel less anxiety having
taken the time to deliberately contemplate and record their most important values at the end of life.
The conversations between family members and friends that follow will ease the minds of those who
may someday be placed in a position to help their loved one at the end of life.

Decks of Go Wish cards are available for purchase (in multiple languages) and to play for free on their
website, www.gowish.org ! When playing the free game alone online, it is even possible to print a copy
of how you sorted each statement by importance. You can then keep it in your personal important files,
and share it with family and friends. Visit their website for testimonials and examples of how to use the
cards to spark conversations about end-of- life decisions, options, and values!

Brittany Maynard’s Widower Continues Fight for Her Legacy.

[pullquote]  Medical aid-in-dying, just as with VSED (Voluntary Stopping and Drinking), is a choice made by those who want to live but instead, after understanding they have no curative options, then choose between two different types of death.  [/pullquote]

It was heartwarming to personally talk on the phone with Dan Diaz not too long ago. Both of us are working to uphold the legacy of our loved one who died. Dan’s wife, Brittany, died by taking advantage of the Death With Dignity law. She had to move to Oregon to do this. My husband, chose to VSED (Voluntarily Stop Eating and Drinking) so he did not have to live into the late stages of Alzheimer’s.

Read this article to learn more about Brittany Maynard and Dan Diaz. Brittany was 29 when she was diagnosed with a terminal brain tumor. She had exhausted all of her options for treatment, including an eight8 hour brain surgery. The tumor would not stop growing and she was determined to have six months to live. Brittany and her husband made the choice to move to Oregon where it was legal to experience gentle, medical aid-in-dying. She chose to die on November 1, 2014. Since that day, her husband Dan continues to share his personal story and tirelessly pursues politicians in every state, imploring them to vote in favor of medical aid-in-dying legislation like Death with Dignity. He carries on his late wife’s story so that others may benefit from the same gentle death she experienced.

Dan Diaz makes a point of distinguishing the importance of terminology. This is not “suicide”. Medical aid-in-dying, just as with VSED (Voluntary Stopping and Drinking), is a choice made by those who want to live but instead, after understanding they have no curative options, then choose between two different types of death. Diaz continues his fight to legalize medical aid-in-dying because he wants others to legally have that choice in the face of impossibly difficult decisions.

Training the Next Generation of Doctors in Palliative Care is a Key to the New Era of Value-Based Care

[pullquote] …training physicians in medical school about empathy, prevention and relief of suffering, and personal fears related to mortality, is the most important step to inspiring a shift in society’s perception of palliative care… [/pullquote]

Bill Frist, heart and lung transplant surgeon and former US Senator, begins his call to action with the World Health Organization’s definition of Palliative care:

“improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”

The barriers to societal understanding of palliative care relate largely to the conversations had by lawmakers and health care providers. While the data exists to show that palliative care is effective and saves people money, those who are insured and Medicare beneficiaries are often only afforded the choice between curative care and hospice. Frist argues that important conversations regarding palliative care must be fact-based and refrain from becoming weighted with suspicions about physicians’ morality, “rationing” health care, and other fears about misappropriated “cost-saving”.

As a physician, Frist has developed an understanding of the suffering of patients, especially those afforded limited choices regarding their own pain, life-limiting diagnosis, and death. As a student and practicing physician through the 1980’s, Frist understood that health care had to either be successfully curative or it was a failure. Little to no training was provided then for students to meet the diverse needs and wishes of patients nearing the end of their lives.  Now, Frist states that training physicians in medical school about empathy, prevention and relief of suffering, and personal fears related to mortality, is the most important step to inspiring a shift in society’s perception of palliative care as one important option available for extending quality-of-life.

When I Die, Recompose Me

[pullquote]“The death care revolution has begun. It’s an exciting time to be alive.”[/pullquote]

Katrina Spade grew up in a medical family. Her family did not shy away from conversations about death. While she ended up going into architecture, she did not stop having those important conversations. While in architecture school she became curious about what would happen to her body when she died.

In Katrina Spades Tedx talk in OrcasIsland she discusses the process of “recomposition” and her project that is centered around expanding a system where the deceased can be peacefully turned into rich soil that can be used to create new life.

The video of her talk can be found here. She begins by explaining that about 50% of American chose to be buried. This requires an immense amount of resources. Furthermore, in some areas cemeteries are running out of space. “It turns out it’s doesn’t really make good business sense to sell someone a piece of land for eternity.”

This has led to a sharp increase in the number of people choosing to be cremated. Today about 50% of Americans choose this option. People tend to think of cremation as a sustainable form of disposition. However, cremation burns away all the potential that a body can have in giving back to the world. “600,000,000 pounds of carbon dioxide go into the atmosphere every year from cremation.”

So, what are other options?

“In nature, death creates life”, says Spade. She wants to redesign death care. Based on a practice called “livestock mortality composting” that has been done in the farm industry for decades, she has helped create a system that replicates that process for humans.

“All we need to do is create the right environment for nature to do its job.”

Her goal is to create a facility that is “part public park, part funeral home, and part memorial for the people we love”.

In the human composting facility, there will be a tall vertical core. At the top of the core, friends and family of the deceased will lay down the body in a laying-in ceremony. They will cover the body in woodchips to create a carbon rich area around the deceased. This helps facilitate the natural breaking down of the body that will occur over the next few weeks. Microbes break down carbons and proteins and turns the body into rich earthy soil. “Eventually you could become a lemon tree”.

The facility will also provide space to support the grieving process, provide space for memorial services, and for end of life planning. Spade says she wants to create a space “where we create soil and honor life…we believe access to ecological death care is a human right.”

“The death care revolution has begun. It’s an exciting time to be alive.”

We’re Bad at Death. Can We Talk?

[pullquote]“Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care.”[/pullquote]Dhruv Khullar M.D. writes a moving piece for The New York Times about why it is important to have deep meaningful conversations about end of life before it is too late to do so. It has been increasingly acknowledged that many Americans would rather not go through intensive care and excessive hospitalization at the end of their life. It is not even clear that the aggressive medical care allows people to live any longer than if they choose not to go through it. The two things that have the biggest impact on improving end of life for individuals is “earlier conversations about their goals and greater use of palliative care services”. Unfortunately, people often put off these discussions until it is too late. Khullar explains that “Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care.” This is important because according to a 2011 Public Opinion report by the Center to Advance Palliative Care “the vast majority of patients say they would want palliative care for themselves and their family members if understood as an ‘extra layer of support’ during serious illness.”

It is important for people to understand what palliative care is. An improved definition has been described as “specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”

There seems to be a disconnect with what physicians tend to view palliative care as and what it really is. Many physicians tend to view it as synonymous with end-of-life care. This leads to certain patients not receiving the care they require because the illnesses may not be traditionally thought of as terminal, such as kidney failure (117,000 reported cases in 2013 in U.S., 89,000 die annually), or chronic obstructive pulmonary disease (15.7 million people currently diagnosed in U.S and was the 3rd leading cause of death in 2014 ). “Palliative care, with its focus on symptom control and holistic well-being, should be considered at any stage of a serious illness – not just at the end. Its use should be driven by patient need, not disease prognosis.”

Physicians and the public should understand that palliative care can be combined with treatment of a disease. We should all be more knowledgeable about these choices and understand there are options for people with serious illnesses. According to research done by the American Medical Association when having conversations about terminal illness nearly 70% of physicians] say they haven’t been trained to have this conversation and about half say they often feel unsure of what to say when discussing terminal illness.”

This needs to change. My husband and I came across this issue when he was diagnosed with both Alzheimer’ and laryngeal cancer, only six weeks apart from one another. End of life issues were never brought up. It was as if our doctors thought we had no choice. The neuro-psychologist said he had about three months of mental competency left and that we should get all our affairs in order. The throat surgeon said he had to have three invasive surgeries on his throat or else he would die a painful death within six to twelve months. That was the extent of our conversation with these professionals.

Death By Design

More people than ever are choosing to be cremated, yet crematoriums are often grim places.”

In America and Europe, the decision and demand to be cremated is growing faster than what the crematoriums are capable of handling. Yet everyone wants to have proper ceremony and decorum surrounding the death of a loved one. Dominic Nicholls writes the story of architects attempting to provide a suitable space where people can remember their loved ones after choosing to be cremated.“…Death is a part of life. Once we leave the Earth we are still part of the universe, and architecture can help connect the two.”

Companies like RCR and Sacred Stones are trying to create a new model for burial services to meet the rising desire for cremation. This currently comes in the form of a sleek looking room that provides intimacy and privacy, or iconic burial mounds found in Anglo-Saxon areas of Europe. Both ultimately give people the same thing. A place to quietly have a moment to reflect on the memory of the ones no longer with them.

Death By Design Article

How to Talk about End-of-Life Care When a Loved One Has Alzheimer’s Disease

When my husband was diagnosed with Alzheimer’s disease, instead of living into the late stages, he chose to vsed. I was his advocate. We discussed everything. He had excellent support. In order for my husband to have a good quality of death there was a lot to talk about. Being able to comfortably talk about end of life is essential in order to prepare for a good quality of death.. Informing ourselves and others without judgment is key to living a good life and having a good death. Cultivating support systems will help yourself and others.

This article reiterates the difficulty of discussing end of life with someone in every stage of Alzheimer’s disease and how you can try to communicate how they want to leave their body

The Conversation Project is a great resource for end of life preparation and support.

How to Talk about End-of-Life Care When a Loved One Has Alzheimer’s Disease