Tag: palliative

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.

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.”

 

The Gentler Symptoms of Dying

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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.

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.

 

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.

A Better Way To Care For The Dying

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With advances in modern medicine people are living longer. The Economist article states

“People in rich countries can spend eight to ten years seriously ill at the end of life”.

Also 3/5 of current deaths come “after years of relapse and recovery.” What this brings to the current status quo is unnecessary pain and suffering for many elderly individuals and their families who do not have an end-of-life care plan. This issue comes not only from people’s challenge with having the difficult conversation but also with the medical profession. Susan Block of Harvard Medical School says “Every doctor needs to be an expert in communicating”.

Doctors tend to be overly optimistic about how long terminally ill patients have to live. This causes many to leave things unsaid and end-of-life wishes unwritten. Recently Americans have seen a rise in planning for treatment care in case of incapacity. However, we are far away from where we need to be. The medical profession as well as individuals must become better at dealing with the inevitability of death.

We can find our ways to deal with the inevitability of death.  Some of us may not find these ways. That is our choice. I learned a great deal observing my husband as he prepared for his death. He acknowledged that he was going to die soon and he dealt with unfinished issues in the last six months of his life. For him, he needed to resolve issues that he had with his mother who was no longer alive. With the help of a therapist, he was able to do this. This brought him deep peace. In addition, he and I met with a chaplain two months before he died. She has much experience in helping people, who are close to death, to prepare for their own. Alan was able to talk about the kind of death he wanted to have. Because he had chosen to VSED (voluntarily stop eating and drinking), he knew approximately when he was going to die. He planned the music he wanted to listen to. We talked about what people would be around him during this time. He talked about what his legacy would be to others. This two-hour conversation covered many issues.

Being An Advocate For VSED For a Loved One

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The very good news is that law will uphold a right to VSED in the context of persons stricken with fatal or serious degenerative maladies.

There will continue to be grey areas and varying perspectives about whether or not a Health Directive, when written when someone is healthy, will hold up and be followed when someone is in the late stages of dementia and is no longer mentally competent. This is a good article exploring this issue. Certainly at this time, I would not rely on a Health Directive to dictate whether or not a person is fed in the late stages of dementia. 

Maybe the issue is bigger and deeper. Maybe the issue is getting clear about the kind of death we want to have. This is something that my husband spent a lot of energy on before he made his decision to voluntarily stop eating and drinking. His demonstration became his legacy to me. It motivated me to look closely at my own thoughts about death and death, and my fears surrounding this. I go into depth of my journey through grief on my website. In my own way, I am already preparing myself emotionally for my death. And I expect to live many more good years! Rather than avoiding this charged issue, I’ve begun to explore it myself. This doesn’t mean that I won’t change my mind. But increasing clarity is bringing me more peace of mind. There are no easy answers. This is deeply personal.

Can the Right to Stop Eating and Drinking be Exercised via a Surrogate Acting Pursuant to an Advance Instruction?

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