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.

For Many Patients, Delirium Is A Surprising Side Effect Of Being In The Hospital

Illustration by Olimpia Zagnoli

 

[pullquote] A long hospital stay is considered to be more than 21 days and present the highest risk for experiencing delirium. Symptoms of Post-Traumatic Stress after hospital discharge, like flashbacks and nightmares, have been reported by 1 in 4. [/pullquote]

Sandra G. Boodman of Kaiser Health News begins with the story of B. Paul Turpin, an endocrinologist admitted to the hospital with a very serious infection. During the five months it took him to recover from the infection, 69-year-old Turpin experienced traumatic delusions and hallucinations that were addressed by doctors with increasing doses of sedatives. The sedatives only made it harder for Turpin to regain his orientation on reality. This disorientation did not cease after the infection cleared and Turpin spent the next months in a rehab center to regain his strength. The experience Turpin had is known as delirium; “a sudden disruption of consciousness and cognition marked by vivid hallucinations, delusions and an inability to focus that affects 7 million hospitalized Americans annually

A serious consequence is that delirium seen in hospital patients is misdiagnosed as dementia, primarily adults over the age of 65. Boodman emphasizes that delirium and dementia are different. Delirium is sudden and severity of symptoms can fluctuate in a single day, while dementia is slower and progressively worsens.

What can cause delirium? Heavy sedation over long stays, especially in intensive care units, can more easily trigger delirium. This can require follow up care in nursing homes. Geriatrician and professor of medicine at Harvard Sharon Inouye first encountered delirium as a young doctor in the 1980s while it was still referred to as “ICU psychosis”. Inouye states that “Delirium is very underrecognized and underdiagnosed”. Prevention of delirium is most important because there are few effective treatment options to help orientate an individual once it happens.

The care patients receives is often the primary trigger for delirium. Hospitals are loud, busy, and bright. It may be difficult to maintain a regular sleep schedule and a healthy routine. A long hospital stay is considered to be more than 21 days and present the highest risk for experiencing delirium. Symptoms of Post-Traumatic Stress after hospital discharge, like flashbacks and nightmares, have been reported by 1 in 4. That is nearly the same rate as combat veterans and rape victims.

Non drug interventions were found to be very beneficial in studies. This included installing large clocks for patients to always know what time it was, maintaining healthy sleep schedules, and making sure they had access to their eyeglasses, water, and hearing aids at all times. These small changes reduced delirium by a significant 53%.

Carelessness on the part of physicians may be to blame but can also be remedied by advocating for loved ones and being informed. Boodman shares an anecdote about a mother who was experiencing confusion and was acting “stoned” after a hospital discharge. The physician thought she may be developing dementia. Her daughter, however, insisted the physician comb her mother’s chart. This led to the discovery that an anti-nausea patch had never been removed and, once it was, her mother felt herself soon after. The advocacy work of her daughter was essential to holding physicians accountable and protecting her mother.

Thirteen years ago, Inouye developed a program called HELP, short for Hospital Elder Life Program. It is a team of volunteers that visit patients older than 70 who are staying in the hospital for 48 hours or less and do not show signs of delirium. The intent is to prevent delirium by orientating patients with regular visits. HELP prevented delirium in 96% of patients in a single year at UPMC Shadyside Hospital in Pittsburgh.

 

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.

When New Cancer Treatments Do More Harm Than Good

[pullquote]  Like many people in his shoes, my father opted to try the new drug because he thought it might help. It was expensive, but his insurance would cover it, and the high price seemed to suggest it was special. It was also better than doing nothing.  [/pullquote]

Cary Gross, professor and cancer researcher at Yale University School of Medicine,  writes a personal opinion piece for the Washington Post. Gross’ life work is to study whether new cancer treatments that are successful in small trials will be therapeutic in routine clinical practice. His 80-year-old father, diagnosed with Hodgkin’s Disease, was offered and took the opportunity to try a new cancer treatment drug, despite the limited research data available and the high cost.

“Like many people in his shoes, my father opted to try the new drug because he thought it might help. It was expensive, but his insurance would cover it, and the high price seemed to suggest it was special. It was also better than doing nothing.”

Gross’ continues to explain the nuances of cancer treatment drug trials. The Food and Drug Administration approved of this specific treatment with only 100 patients studied. More often than not, these drug trials are also performed on younger, healthier adults whose bodies simply respond differently than one of an 80-year-old. In fact, his father experience further debilitation as a result of the side effects of the new cancer treatment. Unable to walk and bedbound, he was in a rougher shape than when he has started.

Cary Gross explains that the government regulations are about to be loosened by President Trump in order to support pharmaceutical companies.

“The 21st Century Cures Act has already created a pathway for companies to obtain FDA approvals with less rigorous evidence. At the same time, large funders of research that study the safety and effectiveness of drugs, such as the Agency for Healthcare Research and Quality and the Patient-Centered Outcomes Research Institute, face uncertain futures in the current Congress.”

Cary Gross ends by strongly stating that people deserve more treatment options and focus should be placed on creating more possible, available cure for diseases. However, prioritizing research and the effectiveness of such drugs is necessary. Evidence-based treatments must become available so that they no longer do more harm than good.

New Feature in “Art of Dying” Magazine

[pullquote] I’m an advocate
for living into our dying, being aware of what is happening to us when it’s happening and not
denying it. [/pullquote]

I hope you takes some relaxed time and view the “Art of Dying” Magazine, Volume 1 and
Volume II. Although the first volume was released at the end of 2016, it is timeless. The second
was released in September 2017.

This profound and beautiful online magazine, “Art of Dying,” Volume II, can be found
at www.artofdying.net. Use the right arrow to turn the pages. Enlarge the page so you can read it
easily. If you want to see Volume I, look at the left margin, and click on the image that looks like
a book cover.

In this exquisite magazine, the first of its kind, John Wadsworth, founding editor and creative
director, has designed and published stories and ideas about death and dying. John says, “Art of
Dying unconditionally respects the numberless ways through which we cooperate with death’s
mystery. All perspectives are welcome, and no insistence that pain and sorrow be negated, nor
that the Unknown be known. Death transcends the humancentric worldview. We, the living and
the dying, unite in death’s transcendence.

Since my TEDx talk, “Not Here By Choice,” given only seven months after my husband died, I
have been interviewed numerous times. I offer information generously as a way to help others
expand their own end of life choices.

In Volume I, the article about Alan and me is the last article in the magazine. It is one of the
most beautiful and poignant articles yet written about Alan’s choice and passage to VSED
(Voluntarily Stopping Eating and Drinking).

The article begins: “Alan Alberts is a harbinger of our culture’s changing relationship with death
and dying. He chose elective death through Voluntarily Stopping Eating and Drinking (VSED)
rather than suffering the disassociated life of Alzheimer’s. His wife, Phyllis Shacter intimately
participated in Alan’s death. Together, they embody the emerging paradigm of couples, families
and friends embracing individual death as a shared experience through which all, the living and
the dead, are united in a heightened awareness of life, love and one another. ”

In this first Volume I, Phyllis tells Alan’s story through conversations they held until
Alzheimer’s silenced his voice.

In Volume II (toward the end of the magazine), released in September 2017, Phyllis shares her journey about her grieving processafter her husband died, and how that led her to the work she continues to do today, advocatingand educating others about elective death and expanding end of life choices. “I’m an advocate
for living into our dying, being aware of what is happening to us when it’s happening and not
denying it.”

If you would like to purchase a hard copy of the magazine, go to www.artofdying.net. On the left side, click on “Order Print.”

Each Volume is a beautiful and heartfelt piece of art to enjoy and share with others.

 

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

We’re Not Too Young

As newly weds it was important to have a discussion about what matters most at the end of life so we can make the right decisions for each other when the time comes

I hope that someday everyone fills out a health directive when they become an adult at 18. Our parents are legally responsible for us in the United States until then. At 18 ideally everyone should fill out a health directive. If you don’t do this and you are in an accident or get a terminal disease doctors and hospitals have a the legal right to make all decisions for you. Your health directive ensures that your loved ones will be able to represent you and your wishes. I filled out my first health directive when I was 40. I still didn’t believe I was going to die someday. I know It is challenging to think about a health directive when you think you are immortal. They vary from state to state, but what is important is what you write. Nevertheless, we are all going to die and we all want to have a good death. We are all familiar with death and through figuring out what what state we want to live into is something only you can decide. That is why preparing is important even when we are young and do not think about death.

A touching story of two Newlyweds 

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

Important End of Life Conversations

This is an all too human story. Having supported my mother and my husband through their end of life choices, I am grateful for the clarity of information that existed between them and me. They were open about their wishes. We had good communication. Many people don’t have these conversations because it creates discomfort for them. Usually, it’s the children who have conflicted issues about discussing the end of life. They don’t want to acknowledge their parents’ deaths.  Following that, they have to acknowledge their own death because it is something we all will eventually face. 

I remember how difficult it was for me to talk about these issues with my own mother. It took years before I got comfortable with it. The conversations made me feel very sad because I had to face that I would lose her someday. I loved her very much. Nevertheless, I learned so much about end of life issues from her courageous demonstration. She was a teacher to me. She certainly helped me pave the way for clear communication with my husband once he was diagnosed with both Alzheimer’s and laryngeal cancer. 

https://www.facebook.com/humansofnewyork/photos/a.102107073196735.4429.102099916530784/1458675897539839/?type=3&theater

 

Margot Bentley’s VSED Story

When I presented recently at the first national conference on VSED at Seattle University, Katherine Hammond followed me in the program. She was Margot Bentley’s daughter and Health Agent. She tearfully told a tragic story about how her mother’s Health Directive was not honored in a nursing home. When she could no longer feed herself, she wanted to be able to stop eating and drinking. The nursing home would not allow this to occur. With the Alzheimer’s getting progressively worse, her mother was kept alive for many years until her body turned rigid. There was a police order that prevented her daughter from taking her home where she would be able to not eat and drink and die peacefully. This is what her health directive requested. Sometimes we are grateful for a death. This is one of those times. Margot Bentley finally died at the nursing home in the Vancouver area in Canada. In order to prevent pain from her body becoming rigid, her doctor gave her additional morphine. Then she died.

From Vancouver Sun [PNG Merlin Archive]

http://vancouversun.com/health/seniors/margot-bentley-dies-a-finality-that-couldnt-come-too-soon-for-anguished-family

If you are interested in how the story has progressed here are the first two articles about the Margot Bentley case:

MEDICINE MATTERS: A family's anguish as nursing home continues feeding vegetative patient

MEDICINE MATTERS: CEO apologizes to family for breach of privacy by care aide in Margot Bentley case