Tag: advance care planning

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

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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

 

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

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

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

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!

Considering Your Options When Lethal Injection Is Not Available

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 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. 

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.”

 

We’re Bad at Death. Can We Talk?

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“Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care.”

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.

Interviewed on Podcast “Death Hangout”

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Recently, I was interviewed by two wonderful men on “The Death Hangout.” This is a very creative podcast that interviews people about issues that surround death and dying. They told me they were reluctant to interview me at first because of the unusual nature of my topic – VSED (Voluntarily Stopping Eating and Drinking).

Take 30 minutes and watch this interview. Because of their honesty and excellent questions, this turned out to be one of the best interviews that I’ve had. Clearly, the two men who interviewed me had a good time too!

I not only talk about the VSED experience with Alan. I talk about conscious dying, how Alan found peace and prepared to die. I talk about my own fear of death and where it came from and how I’ve overcome it. It is a life-giving interview!

This is a podcast that originates in Europe. During the interview, Olivier was in Paris; Keith was in Ireland, and I was in Bellingham, WA.

Enjoy this. Share it with others. Thank you!

Phyllis

Legality Surrounding the Choice to VSED

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Death and dying feels like a messy matter at times. If we haven’t come to terms with our mortality, how can we even begin to think about and exercise our choices.

It is complicated and often intense to think ahead of time about how we want to die. Considering our choices requires deep introspection. For example, VSED is a complicated choice and it requires sufficient support. First the individual has to determine if it is right for him or her. Then loved ones have to support the individual’s decision. It takes time and effort to communicate with medical and legal people to ensure that everything will be carried out properly.

In this blog, I want to focus on the legal issues. I highly recommend that someone who is considering VSED consults with an elder law attorney. Do this well in advance. Not all elder law attorneys will be comfortable with or knowledgeable about VSED. We were fortunate to have a forward thinking elder law attorney. She knew much more about VSED than an estate planning attorney or a family law attorney.

The elder attorney will draw up documents to ensure that your wishes are followed and are within the realm of the law. In our case, my husband had his Health Directive that was filled out and updated as needed. Because he had Alzheimer’s and was still mentally competent, he filled out the Alzheimer’s Advance Mental Health Directive. This can be found on the End of Life Washington website. It is excellent, and it often requires the assistance of an elder law attorney.

My husband was certain that he wanted to avoid ever living in a dementia facility, but he only had so much control. If he landed in a dementia facility, however, we had already talked about our financial assets with our elder law attorney so that there would be money to take care of him and also money left for me. It can be very complicated. The Alzheimer’s Directive also covers decisions involving day to day choices about where someone would like to be treated and cared for. Different scenarios and options are covered in this fine Directive.

Here is a link to the Alzheimer’s Disease and Dementia Mental Health Advance Directive.

Many people ask me about the legality of VSED. Yes, it is a legal option in the United States. I strongly encourage you to look at the white paper written by Thaddeus Pope and Lindsey Anderson called “Voluntarily  Stopping Eating and Drinking: A Legal Treatment Option at the End of Life. It was this document that convinced my husband to VSED.

Another document that our elder law attorney drew up was a document to eliminate risk to the caregivers, the doctor and myself. I also filled out a similar document. Both were witnessed and notarized.

So, there is lots to think about. I encourage you to read my book, Choosing to Die. All the details are covered in the book. It is both a memoir and a guidebook.

We’re Not Too Young

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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

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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

End of Life Choices For Young People With Life Limiting Conditions

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Many parts of Europe are far more enlightened about end of life choices and the compassion that surrounds it. It is horribly sad when we think about young people dying early in their life. Yet when this occurs, we want to have compassionate choice available to us. End of Life choices affect not only elder people but young people too. Below is a link to a full case study and guideline recommendations on how to deal with end of life care, compassion and choices with young people 0-17 with life limiting conditions. 

https://www.nice.org.uk/guidance/ng61