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.

The Widowhood Effect: What it’s like to lose a spouse in your 30s

[pullquote] …it appears that people are more uncomfortable being around someone who is grieving than
someone who is dying… [/pullquote]

This piece by Christina Frangou is certainly one for you to read. This memoir of widowhood at age 36 details her loving relationship with her late husband, Spencer, and the 42 days (from cancer diagnosis to death) they had to say goodbye. The “Widowhood Effect” refers to the impact of grief on the human body that can be devastating.

Christina explains her grieving process and her longing for antiquated mourning traditions, like wearing only black clothing, to signify her pain to others. One of the most difficult aspects of her experience was her young age. It was difficult for her to feel so isolated in her peer group as a 36-year- old widow while other people were getting married and having children. This piece shares a brave perspective on loss that will encourage empathy for the grieving.

From my own experience, after my husband died 4 ½ years ago, it appears that people are more uncomfortable being around someone who is grieving than someone who is dying. I highly recommend an article by Megan Devine called “How To Help a Grieving Friend: 11 Things To Do When You Are Not Sure What To Do.” The article originally appeared in the Huffington Post on 10/24/14. For more useful information on grieving, go to Refuge in Grief. This article is in the appendix of my book, “Choosing To Die,” A Personal Story.

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.

 

“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.

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.

 

Considering Your Options When Lethal Injection Is Not Available

[pullquote] I do encourage everyone to develop a vision of their death, knowledge of their illnesses, acceptance of the inevitable, an appreciation for palliative care, and an understanding of the end-of-life options available in their jurisdiction. [/pullquote]

Physician Sam Harrington offers his own ranking of end-of-life options that hasten death in order to reduce suffering from easiest to most difficult. Harrington lends a critical eye to physician-assisted suicide that is legal in Canada and extends opinionated consideration of the choices American citizens have at the end of their lives. Referring to the highly publicized story of John Shields, a terminally ill Canadian man who recently chose to die through means of lethal injection, Harrington addresses the reality that the majority of Americans do not have such an option. But, Harrington explains that not having this option may not be such a bad thing.

The medical aid in dying law, often referred to as Death with Dignity, is legal in 6 states: California, Montana, Washington, Oregon, Colorado, Vermont and in the District of Columbia. Medical aid in dying is the prescription by a physician for a lethal dose of medication that absolutely must be self-administered. Harrington explains that these lethal doses of medication prescribed through the medical aid in dying law (which only applies to people deemed to be in their last 6 months of life) are not risk-proof themselves. Vomiting, difficulty swallowing, and paradoxical reactions are all in the realm of possibility. Medical aid in dying may not always be as clean and simple so it is important for advocates and those considering their options to remember other methods available to reduce suffering and hasten death at the end of life.

Harrington goes into some detail regarding withholding care; such as manual feedings, antibiotics administration, and ventilation. These must all be considered when creating an advanced directive because often those decisions otherwise fall on the shoulders of loved ones. However, VSED (Voluntarily Stopping Eating & Drinking) is one way of withholding care made as an alert, competent person. It is the choice to stop eating and drinking in order for the body to naturally, organically die. Harrington points out that VSED is an “actively passive step to hasten death that everyone should be aware of”. In contrast to medical aid in dying, Harrington says VSED  “is effective, fast enough to be tolerable, and slow enough to vanquish any familial concerns about an irretrievably impulsive decision sometimes associated with physician-assisted suicide.”

Harrington explores the nuances of the subject but ends by emphasizing what is most important: choice.

“I do not presume to tell you how each individual patient should parse his or her own decision. I do encourage everyone to develop a vision of their death, knowledge of their illnesses, acceptance of the inevitable, an appreciation for palliative care, and an understanding of the end-of-life options available in their jurisdiction. Then they can maximize control of their death.”

 

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.

The Gentler Symptoms of Dying

 

[pullquote] From jokes, to songs, to demonstrations of gratitude, and smiles, dying people may, for biological reasons unknown, be given a final moment by the body’s complex systems to be alert with their loved ones and take a last look around with clarity. [/pullquote]

Sara Manning Peskin, M.D., writes a vividly descriptive piece for the New York Times on a level of consciousness experienced near death coined by biologist Michael Nahm as “terminal lucidity”. While active dying can be confirmed in individuals by observing bodily symptoms such as “the death rattle”, “terminal agitation”, or “air hunger”, Peskin expands in detail on this subtler sign of dying.

The interconnectedness of the human body’s organs is referred to by Peskin as a “compassionate gift” because, as death nears and each organ system shuts down, they communicate to the brain to fall into a numbing slumber. Peskin states: “We may be able to sense people at the bedside on a spiritual level, but we are not fully awake in the moments, and often hours, before we die.”

Terminal lucidity is described as a burst of cognitive clarity and energy unusual compared to a dying person’s usual static state. Peskin details the biological functions and shut downs that cause bodily death which may happen in different sequences depending on the ailment. However, the mystery behind terminal lucidity is that it often occurs irrespective of the patient’s condition. A person dying with dementia, brain tumors, stroke, or kidney failure, for example, may all experience this sudden energy and awareness. “Nearly 90 percent of cases happened within a week of death and almost half occurred on the final day of life.” Peskin writes. From jokes, to songs, to demonstrations of gratitude, and smiles, dying people may, for biological reasons unknown, be given a final moment by the body’s complex systems to be alert with their loved ones and take a last look around with clarity. As Alexander Batthyány, an expert on dying, said: terminal lucidity is “the light before the end of the tunnel.”

This is an interesting article about lucidity before death. Of course, every death is different. My husband had a very conscious journey, using VSED (Voluntarily Stopping Eating and Drinking) as the means to cause his death. Each day of his 9 ½ day journey took him closer to taking his last breath. Each day, his way of communicating to me shifted a little. On the eighth day, he could no longer talk and his eyes were closed, but he could answer “yes” or “no” by moving his eyelids. This is I was able to know if he was physically comfortable. On the ninth day, he was in a coma with loud rapid breathing. Our doctor said he was brain dead and would die in one to three days. His heart was still strong. She left our house. I went into his room and spontaneously began to talk with him. We were communicating even though he was brain dead. I told him he was getting his wish and would not have to live into the late stages of Alzheimer’s. I told him how brave he was and that I was going to be alright. Then he took his last breath. He went from the loud rapid breathing to taking one or two loooong, quiet, gentle breaths. He left.

All of this is explained in more detail in my recently published book, Choosing to Die. I hope you take the time to read this first memoir and guidebook written about VSED as a form of elective death in the face of degenerative disease.