From Death With Dignity, deathwithdignity.org:
As our partner organization, End of Life Washington gears up to celebrate the 10th anniversary of the Washington Death with Dignity Act next November, EOLWA Executive Director Sally McLaughlin is preparing for the next 10 years. We spoke with her earlier this month about the organization’s recent accomplishments, long-term goals, and strategies to confront challenging issues in the year ahead.
What was one of EOLWA’s most significant accomplishments in 2017?
The thing that has of late gotten us the most attention and press is our organization’s latest end-of-life planning document: the recently published instructions for oral eating and drinking. We worked hard to develop a document which allows a person to articulate her wishes about when to be offered food and fluids during late-stage dementia. We are pleased to offer this resource to all Washingtonians.
How do you measure EOLWA’s success?
We monitor how many Washingtonians die from ingesting medication prescribed to them by their doctors under the Washington Death with Dignity Act; then, we look to see how many were clients of ours. In 2014, there were 127 deaths; 124 of those were clients of ours. In 2015, there were 219 deaths, and 202 of those were our clients. We are seeing a subtle growth in people who are able to access and complete the Death with Dignity process on their own, without our assistance. From our perspective, that is a very positive development.
In the final analysis, we do not want to be a self-perpetuating organization. Our goal is to do our job right and so well that eventually we won’t need to exist. We want to see other organizations, especially hospices, take care of their own clients so that we don’t have to swoop in at the last minute. Now we are seeing other institutions taking care of their own patients who have chosen to end their lives using the Act. We are pleased to see the role we have played in helping organizations get to that point.
What are some examples?
We are supporting a designated social worker at the University of Washington Medical Center. She is doing such a phenomenal job that she doesn’t need us anymore, which of course is part of our goal. Making sure UW Medical Center has its systems and personnel in place helps them to better steward their death with dignity patients, leaving EOLWA in an advisory role.
We continue to work with Washington State hospices as well as facilities such as Seattle Cancer Care Alliance to support them as they develop robust protocols to respond to patient requests for death with dignity. We’re still the clearinghouse for information about end-of-life options and referrals, but we are seeing slow but measurable progress among healthcare organizations in our state.
It can be a challenge to provide services to patients in rural areas. How is EOLWA working to serve people outside of Washington’s population centers?
It’s a real challenge for us because of our desire to provide rigorous training and mentorship to people who work under the EOLWA name. Our normal process when you become a volunteer client advisor entails an in-person interview followed by an online information training, including quizzes which highlight understanding. You must attend a 3-day in-person training and attend monthly meetings, and you work with a mentor for a minimum of one year. When people live in rural areas, it’s a little harder to participate in our program. How do we mentor you long-distance? We’re working on building teams in less populous parts of the state. Given that there’s less demand for Death with Dignity in more politically conservative rural areas, we could do what we need to do with a small team. We are slowly but surely building that infrastructure.
What are you most excited about for 2018?
I am excited to continue the growth that we’ve implemented with regards to our volunteers and their choices for involvement. I am most excited to see us get a better foothold in other areas of Washington state. I have begun setting up meetings with providers and potential volunteers in new areas. We continue to canvass senior centers, distributing our brochure and connecting with staff and residents.
Through our workshops and seminars, we address not only how qualified individuals can access the law; we also provide education about all end-of-life choices. Part of that education includes ensuring that every Washingtonian over 18 is aware of how to create a viable advance directive and how to access the law.
I want every Washington resident to know that she has the right to explore death with dignity or physician aid in dying. I take it personally when I hear someone from out of state say, ”If I come down with [a terminal illness,] I’m moving to Oregon to use the death with dignity law.” People need to know that Washington is one of the states that has this option, and that we can provide support and guidance to help them get their needs met.
On a personal note, I feel so fortunate to be able to work with an organization and for a cause that is so inherently meaningful. I came to the Death with Dignity movement after 42 years in the world of education. This work is just as meaningful, if not more so. That is why I continue to devote my time to ensuring Washingtonians have the information and the support they need to die on their own terms, with dignity and control.
op-ed from The Seattle Times, November 17th, 2017
by Robert A. Free
After moving my sister to a memory care home in Oregon following her Alzheimer’s diagnosis, I began exploring legal options of pursuing death with dignity if I am confronted with dementia. I don’t know that my sister would have wanted to end her life early in order to escape the ravages of serious dementia, but I want to exercise choice if I receive that diagnosis. I do not want my family to experience the pain that we experience as we watch my sister become a different person, slowly relinquishing her quality of life and sinking into unresponsiveness.
Washington’s Death with Dignity Act — and similar laws in Oregon, California, Vermont and Colorado — provide no relief for people with Alzheimer’s or other forms of dementia. The laws require that a person be mentally competent to choose a planned death, as well as receive a prognosis of six months or less to live.
The only legal option when faced with serious dementia is “Voluntarily Stopping Eating and Drinking,” or “VSED.” This option is available to persons in the very early stages of dementia when they still have sufficient cognitive ability to choose between life and death and enough fortitude to see the VSED process through. There is no requirement for a prognosis of six months or less to live.
There is another stage of progressive dementia toward the end of a person’s life during which an earlier and natural death is possible if certain documents are prepared before the person sinks into dementia. Almost all dementia patients eventually reach an unresponsive stage when nourishment becomes unimportant to them. Believing they have an absolute duty to provide nourishment, caretakers frequently cajole people to eat and drink beyond the time a person is interested in doing so.
Caregivers sometimes interpret a person’s open mouth when spoon fed as a desire to eat when medical practitioners tell us that opening the mouth when touched with a spoon is a reflex rather than an expression of a desire for food. Demented persons have the right to decline forced feeding, which is tantamount to an assault on the body.
End of Life Washington (formerly Compassion & Choices Washington) is an organization providing support for persons choosing end-of-life options. We recently drafted “Instructions for Oral Feeding and Drinking,” similar to an advance directive, a document which expresses a person’s decision about when to be offered food and fluids during late-stage dementia.
The instructions list several reactions — such as turning one’s head away, spitting out food, or appearing indifferent to being fed — which should be interpreted by caregivers as the desire to stop eating and drinking, thereby allowing the natural dying process to proceed. In addition to signing these instructions, it is vital to appoint a surrogate health-care decision-maker, pursuant to a power of attorney document, to make health-care decisions if dementia develops.
The appointed surrogate can make sure caregivers honor the demented person’s wishes to be allowed to stop eating and drinking if the indicators listed above are present.
VSED and these instructions are legal and certainly morally acceptable ways of helping people die with dignity if Alzheimer’s or other serious dementia strikes. Both can provide some solace to people who contract this tragic disease.
Robert A. Free is a retired attorney and board member and past president of End of Life Washington.
by JoNel Aleccia, Kaiser Health News
People who abhor the thought of being kept alive with feeding tubes or other types of artificial nutrition and hydration have, for years, had a way out.
They could document their wishes to halt such interventions — and have them honored — using advance directives.
That includes patients diagnosed with progressive dementia who are able to record crucial end-of-life decisions before the disease robs them of their mental capacity.
But the practice has rarely — almost never — included provisions to refuse food and fluids offered by hand. Until now.
A Washington state agency that advocates for medical aid-in-dying has created guidelines for dementia patients who don’t want to be spoon-fed at the end of life.
The group End of Life Washington, or EOLWA, which assists people using the state’s 2009 Death with Dignity Act, recently posted new “Instructions for Oral Feeding and Drinking” on its website.
Aimed at people with Alzheimer’s disease and other progressive dementias, the document provides a two-page template for patients to instruct caregivers not to provide oral food or fluids under certain circumstances. There’s another document explaining the do’s and don’ts of using it.
The instructions are ground-breaking for patients who fear losing control not only of their faculties but of their free will to live and die on their terms, said Sally McLaughlin, executive director of EOLWA.
“We get calls from folks with concerns about dementia and concerns about the fact that loved ones with dementia feel like they’re being force-fed,” McLaughlin said. “Many, many folks understand that as they stop eating, they would like no one else to feed them.”
Critics say the new document raises concerns about potential mistreatment of vulnerable patients, arguing that such “instructions” could be used essentially to starve the elderly or incapacitated.
“It really is troubling,” said Stephen Drake, research analyst for the disability rights group Not Dead Yet.
He points to other so-called right-to-die efforts, such as the refusal of artificial nutrition and hydration, saying they started out narrowly defined and then became common practice.
“It really is a big game changer in the number of people whose lives can be ended when they’re in vulnerable situations,” Drake said. “In legal situations, this is a door-opener.”
Proponents of the guidelines say they fill a gap in information for people already interested in navigating the uncertain landscape that surrounds assisted feeding at the end of life.
“What we are saying is that there are objective and somewhat subjective conditions in the future where you can say ‘I’m giving you instructions now to help you interpret my wishes,’” said Bob Free, a Seattle lawyer who helped draft the document. “We have never really seen a standard form or advance directive to govern this.”
The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink, the authors note.
“If I accept food and drink (comfort feeding) when they’re offered to me, I want them,” the document states.
But if the person appears indifferent to eating, or shows other signs of not wanting food — turning away, not willingly opening their mouth, spitting food out, coughing or choking — the document says attempts to feed should be stopped.
And the guidelines tell caregivers to respect those actions.
“No matter what my condition appears to be, I do not want to be cajoled, harassed or forced to eat or drink,” the document states. It adds that the “reflexive opening” of the mouth should not be interpreted as consent to eating.
“An analogy is the difference between when a knee is tapped with a hammer and the reflexive response is a knee jerk and when a person voluntarily raises his or her knee,” said Free. “We think this is a fairly objective test, which in real life will be clear.”
The new guidelines won’t be binding — legally or ethically, experts say. Nearly two dozen states have laws that address assisted feeding, including many that prohibit withdrawing oral food and fluids from dying people.
“The hard part about advance directives is even though you put your wishes there, it doesn’t mean a medical professional will honor it — or that a facility will honor it,” said Jonathan Patterson, staff attorney for Compassion and Choices, a group that supports medical aid-in-dying.
The new forms follow two recent high-profile cases in which family members said dementia patients were kept alive with spoon-feeding by caregivers, despite written requests to stop.
Margot Bentley, 85, of British Columbia, died last year. She was a retired nurse who had cared for dementia patients before being diagnosed with Alzheimer’s in 1999. In 1991, she wrote a statement stipulating that she wanted no nourishment or liquids if she developed an incurable illness. However, the nursing home where she was a patient continued to spoon-feed her, despite her family’s protests. A court ruling upheld that action, saying that food is basic care that cannot be withdrawn.
Nora Harris, 64, of Medford, Ore., died on Oct. 11 after an eight-year struggle with early-onset Alzheimer’s disease. More than a year earlier, her husband had gone to court to stop caregivers from spoon-feeding Harris, who had an advance directive that called for no artificial nourishment or hydration. A judge declined, siding with officials who said the state was required to feed vulnerable adults.
Such cases horrify people who fear the same fate. Nancy Christensen, 60, a Seattle nurse, said she updated her living will herself within days of reading about Harris.
“I thought, ‘Wow, I need to be much more specific,’” said Christensen, who appended notes saying she doesn’t want assisted feeding if she can no longer feed herself. “I don’t think anybody thinks about this until they’re too far into it.”
Free, 71, said he plans to fill out the new documents himself.
“It’s been a personal desire of mine to have a dignified death,” he said. “The idea that my sons would have to witness me in a deteriorated state is very frightening and demoralizing.”
Whether VSED, which stands for “voluntarily stopping eating and drinking,” can be authorized in advance by people diagnosed with dementia remains unclear. The question has gained traction in a nation where dementia cases in people 65 and older are projected to reach 7.1 million by 2025. Paul Menzel, a retired bioethicist at Pacific Lutheran University in Tacoma, Wash., said some people want to avoid the most debilitating stages of the disease.
“It’s not misery they’re afraid of,” he said. “They just don’t want years of withering.”
The EOLWA document is a novel tool, but it may not go far enough, said Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying. The conditions it lists typically apply to the final stages of dementia, she said. Some patients want the right to refuse food earlier in the disease process in a deliberate effort to hasten death.
Until now, however, there have been few models for articulating those desires.
“It certainly is an improvement over no previous mention of hand-feeding,” Schwarz said. “Maybe this is where it must begin.”
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.
From our friends at End of Life Choices New York:
“The American Nurses Association’s (ANA) Center for Ethics and Human Rights recently released a new position statement on Nutrition and Hydration at the End of Life. In this position statement and its accompanying recommendations, the ANA now recognizes that decisionally capable patients have an acknowledged right to voluntarily stop eating and drinking (VSED) as a means to hasten their dying. The ANA is traditionally a rather conservative organization; it tends to make changes slowly and cautiously as the professional organization that represents the interests of the nation’s 3.6 million registered nurses. So this revised position statement is a big deal.
Although there has long been a well-established legal right for patients or their surrogates to forgo any life-prolonging treatment (including medically provided nutrition and hydration), orally provided food and fluid has previously not been specifically addressed by the ANA.
As increasing numbers of suffering patients choose to intentionally hasten death by VSED, some nurses continue to question whether hastening death in this manner can be distinguished from an act of suicide. This can be a particularly difficult choice to professionally support when the patient’s suffering is not caused by a terminal illness or intractable physical pain. When a patient chooses to VSED, it can be argued that the ‘terminal fast’ is the cause of death rather than any underlying disease. Some nurses may feel morally complicit if they provide palliative support to such patients – particularly if they are untrained in principles of palliative care.
This revised position statement ought to relieve some of that anxiety as it specifically states that “some people who choose VSED may not be imminently dying. Psychological, spiritual or existential suffering, as well as physical suffering, can lead to patient requests for hastened death.” While acknowledging the importance of good palliative symptom management (both for the underlying disease and any symptoms associated with fasting), the statement concludes “VSED at the end of life is used to hasten death, and is a reflection of autonomy and the patient’s desire for control.”
by JoNel Aleccia, Kaiser Health News
Bill Harris is blunt: For more than a year, he has been trying to help his wife die.
The 75-year-old retired tech worker says it’s his duty to Nora Harris, his spouse of nearly four decades, who was diagnosed with early-onset Alzheimer’s disease in 2009.
“Let me be honest: Yes. It’s what she wanted,” he said. “I want her to pass. I want her to end her suffering.”
Nora Harris, 64, a former librarian, signed an advance directive after her diagnosis to prevent her life from being prolonged when her disease got worse. Now, her husband said, she’s being kept alive with assisted eating and drinking against her stated wishes.
The onetime Virginia Woolf scholar and world traveler can no longer communicate, recognize family members or feed herself. She’s being spoon-fed at Fern Gardens, an assisted living center here, after a local judge ruled against Bill Harris last summer, concluding that state law mandates that she continue to receive help.
“She did not want to be in a position where somebody had to totally take care of her,” Bill Harris said. “When nature, through the disease, basically said, ‘I can’t feed myself,’ Nora’s position was, that’s it. Let nature take its course.”
In recent weeks, Nora Harris has been gaining weight, climbing from less than 100 pounds to 102 or 103 — just enough to keep her stable. Bill Harris learned that, in addition to three state-required daily meals, staffers have been feeding Nora optional snacks, too.
Now he’s considering going back to court to try to stop the snacks in an effort to let Nora Harris lose enough weight to end her life. Twice before, in 2015 and 2016, she fell to 90 pounds and was enrolled in hospice, with six months or less to live, only to rebound, he said, when staffers coaxed her to eat.
“You’re denying Nora the right to die on her terms,” Bill Harris said. “It’s not a right-to-life issue, it’s a right-to-die issue.”
The southern Oregon case underscores the complexity surrounding the use of advance directives for people with Alzheimer’s disease and other dementias.
Advance directives are legal documents that spell out a person’s end-of-life wishes if they are unable to make their own decisions.
These directives generally allow named agents the power to withdraw artificial hydration and nutrition in the form of feeding tubes, for instance. But when that same nourishment is offered by hand, several states, including Oregon, draw a line, said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University in St. Paul, and an expert on end-of-life law.
Across the U.S., the more than 5 million people living with dementia are typically encouraged to put their end-of-life wishes into writing early and to pick a trusted person to carry them out, said Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association.
That’s no guarantee, however, that those requests can — or will — be honored. In Nora Harris’ court case, her advance directive and testimony from her husband, her daughter and two close friends all indicated that she wouldn’t want anything to prolong her life.
“That court decision basically condemned Nora to the full extent of the Alzheimer’s disease,” Bill Harris said. “They gave her no exit out of this situation.”
But Eric Foster, the court-appointed lawyer who represented Nora Harris, argued that her directive doesn’t specifically mention food and drink presented by hand. Because she now opens her mouth and swallows when food is offered, she has, in essence, changed her mind, he said in a court document.
Bill Harris said that opening her mouth is a reflex, an automatic response to six decades of habit.
Kallmyer, with the Alzheimer’s Association, said it’s hard to tell whether someone with dementia is acting out of reflex or desire. The association recommends against tube-feeding for patients with dementia, while also advising what they call “careful hand-feeding.”
“If they’re eating and they’re opening their mouth, it’s difficult to say they didn’t want it,” she said.
Foster’s stance was backed by a judge who sympathized with Bill Harris’ plight, but sided with Fred Steele, Oregon’s ombudsman on long-term care. Steele said Nora Harris’ advance directive wasn’t specific enough to advise Fern Gardens staff to withhold food and water.
“Our concern was just focused on the administrative rule,” he said. “If the rule exists to prevent a facility from committing elder abuse, our focus was on what the rule required. The rule requires the resident be cued with food and they have the choice of eating or not eating.”
Lynn Rawlins, the center’s administrator, said her hands are tied.
“We have to feed them until they stop opening their mouths,” she said before a tour of the center last month. “Unless feeding them causes more harm from aspirational pneumonia or a choking factor. We still have to feed them, even if they choke.”
Nora Harris is a small woman with graying brown hair and dark, confused eyes. On a recent 88-degree summer afternoon, she wore a maroon fleece sweater, gray sweatpants and mismatched socks.
She spoke in urgent whispers, syllables spilling out, unlinked from words.
Bill Harris put an arm around her shoulders reassuringly.
“Absolutely,” he said. “Of course.”
But he added later: “It’s difficult visiting her, especially when you know what Nora was like before.”
That’s the thorny issue at the heart of advance directives for people who lose the capacity to make their own decisions, said Pope.
If Nora Harris were aware enough to refuse food, instead of passively accepting it, there would be no question.
“Do we listen to the previous Nora or to the current Nora?” Pope said. “That is, unfortunately, not legally or ethically answered well.”
A bill introduced in the Oregon Legislature last year would have allowed an appointed committee to amend the state’s advance directive form. Critics, including Oregon Right to Life, an advocacy group, opposed the effort, arguing that it paved the way for mistreatment of vulnerable people, including dementia patients like Nora Harris.
“OR legislators move to allow starving, dehydrating the mentally ill,” one headline read.The bill passed the state Senate, but failed to advance.
Nora Harris’ situation also raises issues surrounding a controversial method of hastening death for seriously ill people known as “voluntarily stopping eating and drinking,” or VSED. It causes death through dehydration, usually in seven to 14 days.
VSED is being used by a small but growing number of determined patients with the help of their families, Pope said.
In Washington state, board members at End of Life Washington, a nonprofit that supports medical aid-in-dying, created an advance directive focused on people with dementia. Soon the group plans to release a new form for people who want to leave instructions for stopping eating and drinking at the end of life.
Medical experts say VSED can be a relatively painless, peaceful death. In the absence of nutrition and hydration, the body produces opiate-like substances that blunt hunger and thirst. With additional painkillers, comfort can be ensured, they add.
An analysis of VSED research concluded that “terminally ill patients dying of dehydration or starvation do not suffer if adequate palliative care is provided.” A 2003 survey of nurses in Oregon who helped more than 100 patients with VSED deaths said they were “good” deaths, with a median score of 8 on a 9-point scale.
Unlike aid-in-dying laws or rulings now in place in six states, VSED doesn’t require a government mandate or doctor’s authorization.
But the question of whether people with dementia can authorize a VSED death in advance, to be enacted later, when they’ve lost the capacity to choose, remains legally uncertain, Pope said.
“We don’t have statutes, we don’t have regulations, we don’t have a court case,” Pope said. “We have this thing where you’re allowed to refuse medical care. But this is basic care. Are you allowed to refuse basic care?”
For now, the answer in the case of Nora Harris is no.
That’s frustrating for Bill Harris, who says the emotional — and financial — toll of her illness has been enormous.
“The person you know, the person you married, who you love, is basically going away, fading away before your eyes,” he said.
He had planned to retire from his job at Wells Fargo bank at age 67 but worked an extra eight years to pay for the costs of Nora’s care, which total more than $80,000 out-of-pocket each year. Because she fell ill at age 56, she didn’t qualify for Medicare or other government help.
Worse, though, is seeing his once “extremely bright” wife wandering the halls of the assisted living center, “like a zombie,” he said.
“Nora was quite enamored of Virginia Woolf,” Bill Harris said, referencing the British author who drowned herself after years of mental illness.
“If she had known this would happen, she would have put rocks in her pockets and jumped in the river. This is absolutely where she never wanted to be.”
by Robert Samuelson, via The News Tribune
For those of us who had hoped that American attitudes toward death were shifting in ways that would promote a wider reconstruction of the health-care system, there’s discouraging news from Health Affairs, the preeminent journal of health policy.
It devotes its latest issue to “end-of-life” care and finds that — at least so far — the power to make health care more compassionate and cost-effective is limited.
That was the vision. Americans would become more realistic about death. Through “living wills,” they’d reject heroic, often futile, treatment to keep them alive. Health spending would be lower (by one estimate, a quarter of Medicare spending occurs in the last year of life).
People would die with dignity. They’d be spared needless suffering.
Superficially, the vision seems to be triumphing, according to the 17 studies in Health Affairs. By one study, a third of American adults — and nearly half those 65 and older — have some sort of living will.
From 1999 to 2015, the share of Americans who died in hospitals dropped from more than half to 37 percent. Over the same period, the number dying at home or in a hospice rose from less than a quarter to 38 percent. Moreover, at 8.5 percent of health costs, spending in the last year of life is lower in the United States than in some other countries.
But on inspection, the gains seem less impressive. The share of people with living wills has remained stuck for six years. According to another study in Health Affairs, the increase in hospice care is not substituting for expensive hospital care but adding to it.
“What has emerged [is] a relatively new pattern of hospice use,” said the study by Melissa Aldridge of Mount Sinai hospital in New York and Elizabeth Bradley of Vassar College. “Hospice enrollment [has become] an ‘add-on’ in health care after the extensive use of other health care services and within days of death.”
Patients receive expensive care until nearly the end, when they’re switched to hospice care. This obviously limits the potential for reducing costs and for relieving patients’ suffering.
In addition, spending for the last year of life, though significant, is still a small share of total spending, refuting the argument that the high cost of dying explains why U.S. health care is so costly.
“We found that U.S. health spending [during the last year of life] was less than one-tenth of total U.S. health care spending [8.5 percent] and thus cannot be the primary cause of why U.S. health care is so much more expensive than care in other countries,” concluded another study in Health Affairs headed by Eric French of University College London.
None of this means that end-of-life care can be ignored. Indeed, the problems will almost certainly worsen, because much care-giving is by families and friends. Already, 29 percent of the adult population — two-thirds of them women — consider themselves caregivers.
As the population ages, the burdens will grow. In 2010, the ratio of potential caregivers (people 45 to 64) to those aged 80 and older was 7-to-1; by 2030, it’s projected to be 4-to-1. Alzheimer’s cases are increasing. Spending pressures on Medicare and Medicaid will intensify.
Just whether the persistence of high-cost care reflects good medicine, a deep human craving to cling to life, or both is unclear. But the rhetoric about “end-of-life” care has changed more than the reality. To the question — Can we die in peace and with dignity? — the answer is “not yet.”
Robert Samuelson is a columnist for Washington Post Writers Group.
by Jeremy Topin, via The Washington Post
The dilemma for the critical-care team was not uncommon: An elderly patient with a life-threatening illness and in severe pain, not understanding the nature of his situation. A decision needing to be made about how aggressive to be. A doctor trying to convince the patient to pursue a rational approach, one based on understanding the limits and capabilities of life-supporting interventions.
This situation plays out in emergency rooms and intensive care units hundreds of times a day. But two factors made this incident unique. First, this patient — struggling to breathe, battling low blood pressure and in tremendous pain — was my wife’s grandfather. Second, the doctor recommending aggressive measures, contrary to the patient’s advance directives, was I.
Herb Lee, a healthy, independent 87-year-old, had gone out to dinner. Something must have been wrong with the food because he vomited all night long. In the emergency room the next morning, doctors diagnosed him with severe shock and kidney failure from severe pneumonia. (He had aspirated some material into his lung.) His breathing was labored, his oxygen was low and his pulse was fast and weak. But Herb was unable to process any of this. Sciatica pain down his lower back and leg had become excruciating from lying on a hospital gurney, and the only thing he wanted was pain medicine. And he wanted it now. But none was forthcoming, given his tenuous blood pressure and marginal breathing.
Before this, Herb had been clear about treatment if he ended up in a hospital. After watching his wife battle metastatic cancer years ago, he knew what he did and did not want: No life support. No breathing machines.
This left Herb and his doctors in a bind. The medical team at the ER wanted to treat Herb’s pneumonia and sepsis. But antibiotics take time, often 48 hours, before they have an effect, and patients often get worse before they get better. The pain medication he was desperately calling for was out of the question, as it would further lower his blood pressure and impair his breathing.
The medical team was failing Herb on all fronts. Not only were they not giving him the best chance to survive, but allowing him to continue on in significant pain while struggling to breathe was unacceptable. He was in no condition to make complex life-or-death decisions.
So my wife’s family looked to me, a young internist in the second year of specialized pulmonary and critical care training, and a moonlighter in that same ICU, to help make decisions.
What do you do when you disagree medically with a patient on matters of life and death? When there is no ability to have a thoughtful, patient, nuanced conversation over life support? For Herb, was it a “hard no” to any intubation? Were two days okay if there was a high likelihood of recovery? Or was even one day too much?
When doctors disagree with patients and families, it is usually the family choosing aggressive care in the face of overwhelming illness even though the benefits of life support are negligible or nonexistent. It gives a reprieve of sorts, allowing for further discussion. But what if it’s the reverse? What if the patient’s decision for no intervention leads to a potentially premature or unnecessary death from a treatable illness? What if a patient’s limits were stated without ever considering the current context? And what if this is your own family member writhing in pain, struggling to breathe?
We often talk about decisions of life and death, of aggressive care or comfort, of full “code” — do everything possible — vs. do not resuscitate/do not insert a breathing tube. One or the other. Binary options. But in real life, applying these decisions can get messy. There is nuance and context and uncertainty.
And what happens when, in these shades of gray, in this fog, you disagree with your patient? What if you are a knowledgeable critical-care doctor, and it’s your family member? If you choose to treat, you take away his autonomy and right of determination. If you choose to limit care, you are choosing an irreversible path to death and a future full of what-ifs. What do you choose when you are in the fog?
With Herb, I chose to treat, not to limit. I chose paternalism over autonomy. I chose a time-limited trial of life support over a morphine drip. I chose not to be the grandson-in-law who made the last decision leading to Herb’s death. He had pneumonia. As a doctor, I knew it was treatable. Reversible. Curable.
And so a breathing tube was placed. Once his breathing and blood pressure were stabilized, morphine was administered to treat his pain. We bought some time to allow antibiotics and his immune system to turn the tide on his pneumonia and sepsis. At 48 hours he made enough progress to push forward another day. The breathing tube was removed 24 hours later, and he was able to leave the ICU shortly thereafter. He avoided most if not all of the potential complications and pitfalls that often plague patients in the ICU. A week on the regular medical floor was followed by a transfer to a nursing facility. Within six weeks, Herb was back home.
In my world of critical care, this is a win. It does not get much better than halting the progress of a life-threatening illness, supporting the body while it heals and nursing the patient through a hospitalization to an ultimate return home.
Over the following months, Herb would see another great-grandchild born and celebrate family birthdays. And at one of those dinners, sitting next to Herb, I took the opportunity to finally ask:
“Herb, I made the right choice, right? Overriding your ‘do not resuscitate’ order?”
He looked at me and simply said, “I wouldn’t want to go through that again.”
He told me of the countless sleepless nights, lying in the bed, scared, confused, not knowing when light would finally come to end his darkness. It was hell, and not one he wanted repeated. If he could do it over again, he said, it would be no. No breathing tube. No life support.
I was shaken. What does it mean when an unequivocal win in my world is not a win in the eyes of the person for whom it matters most?
The intersection of critical illness, advance directives and end-of-life decisions is an uncomfortable place. It is hard to talk about these issues when in good health, much less in sickness. But we must run toward — and throw ourselves into — the discomfort. We need to talk to our family and friends and share what it is that makes life worth living — and when it’s not. We need to explore what “quality of life” means for each of us. By doing so, we inject some much-needed light into the darkness and the fog, and help bring clarity when it’s needed most.
A few months later, Herb developed another severe pneumonia. There were no tense conversations, no anxious looks among family. There was light where before it had been dark. And as we focused on Herb’s comfort, that light remained. He died a few days later in the hospital, with the palliative assistance of hospice.
It has been more than 13 years since Herb passed away. Over that time, I have been involved in countless frantic discussions with patients and their families about goals of care in the midst of critical illness. It’s never easy, but because families often ask me what to do, I share with them Herb’s story. And by doing so, he continues to help shed light when it’s needed most and to help determine what a “win” means for each of us.
Topin blogs about life and medicine at Balance. Twitter: @jtopin1.
By Elias Lieberman, via Cape Cod Times
In his My View opinion piece of June 21, “Physician-assisted suicide obsolete and primitive,” William Gallerizzo applies a scattershot approach in stating his opposition to medical aid in dying. Confusing correlation with causation, raising the specter of “human sacrifice” and “cannibalism” and, most egregiously, bringing forward the tremendously offensive comparison of the Nazis murder of those deemed “undesirable” with the legally established right of competent, terminally ill people to ingest life-ending medication to end intractable suffering associated with terminal illness.
Mr. Gallerizzo makes a point of telling the reader that he is an ordained Catholic deacon, as if to suggest this qualifies him to decide what ethical choices others should be entitled to make. We write as clergy representing several faith traditions who are united in our belief that everyone should be entitled to make the most fundamental of choices if faced with suffering that cannot be adequately addressed as a consequence of terminal illness.
What is medical aid in dying? It is a safe and trusted medical practice in which a terminally ill, mentally capable adult with a prognosis of six months or less to live may request from his or her doctor a prescription medication to self-ingest to bring about a peaceful death.
The American public consistently supports medical aid in dying by large majorities (68 percent to 74 percent), as shown in both independent national and state surveys. Three U.S. state polls also confirm that a majority of individuals who identify with a faith tradition support medical aid in dying as an end-of-life option.
Every religious tradition has its own values, tenets and rituals around death. One’s individual beliefs are an important factor in one’s understanding of, and approach to, dying. While some faiths counsel their adherents that advancing the time of death to avoid suffering is immoral, others just as strongly counsel the dying and their families to leave this life in the manner most meaningful to them. Choosing medical aid in dying is only one end-of-life option. Those who are opposed need not choose it. For those who face unbearable suffering that cannot be effectively addressed, even with the most advanced palliative care, this option can give them both courage and hope, allowing them to live fully as long as possible and to pass peacefully when death is imminent. This is a personal decision that only the individual can make.
Faith leaders have no specified role in medical-aid-in-dying laws, nor should they; it is a medical practice involving a dying person and his or her health care providers. The person who chooses medical aid in dying may well ask for spiritual and emotional support from the faith community or faith leader, but no one — not a health care provider or a faith leader — is ever forced to participate.
What about the value of suffering? Beliefs around suffering depend on the individual and the faith tradition. Our understanding of suffering and its purpose in our lives will likely vary from those around us, so we need to allow people to make their own decisions about how to deal with difficulty at the end of life. One individual’s beliefs, or one faith tradition’s teachings, should not dictate how those who do not share them live their lives.
Medical aid in dying is but one end-of-life option for people whose suffering becomes unendurable, and is most frequently used in conjunction with hospice and palliative care. Some terminally ill people will turn to VSED (voluntary stopping of eating and drinking) to hasten death and end suffering; some will opt for palliative sedation rendering them insensate to pain but unable to further interact with others. Evidence from Oregon tells us that the three most frequently mentioned end-of-life concerns were loss of autonomy, decreasing ability to participate in activities that made life enjoyable and loss of dignity. Medical aid in dying is but another option for people whose suffering robs their life of meaning.
Medical aid in dying is not suicide, which is an irrational response to situations perceived to be unchangeable; it is a rational decision, voluntarily undertaken to avoid suffering at life’s end. One physician phrases it this way: “The terminally ill are not suicidal if they ask for a quicker death; they do not reject life; their bodies are doing that for them.”
The well-documented experience of those states that have some form of medical aid in dying now provides decades worth of data that demonstrate that the practice offers a meaningful and valuable end-of-life option.
For all of the aforementioned reasons, we endorse the passage of legislation being considered in the House and Senate that would afford residents of our commonwealth this important end-of-life option.
— Elias Lieberman is rabbi at Falmouth Jewish Congregation. This commentary was also signed by the Rev. John Gibbons of First Parish in Bedford, the Rev. Nell Fields of Waquoit Congregational Church and the Rev. Deborah Warner of Church of the Messiah in Woods Hole.
by Devon Andre, via belmarrahealth.com
We will all die at some point. No matter how healthy our lifestyle is or how much exercise we get, all we can hope for is to live as long as we possibly can. We may have started families or have loved ones close to our hearts that we don’t want to leave, but this is inevitable.
Sadly, most people in their advanced years don’t want to think about death, as new research finds that two-thirds of Americans adults have not completed an advanced directive.
Important legal documents
Advanced directives are legal documents that outline a person’s wishes were they to become incapacitated by a serious illness or injury. Advanced directives often include a living will as well.
“Most experts agree that some form of written directives are a key component of advance care planning, and yet rates of completion are low and do not appear to be increasing,” said study leader Dr. Katherine Courtright. She is an instructor at the University of Pennsylvania’s Palliative and Advanced Illness Research Center.
The researchers believe there are barriers that prevent people from completing these documents that need to be addressed on a national level, particularly for those who are chronically ill and have a high risk of critical illness or death.
The team’s research looked into data from more than 795,000 Americans. Only 29 percent of them had completed a living will containing specific end-of-life wishes, while 33 percent were found to have designated health care power of attorney—a representative that will act in the person’s best wishes.
Going out on your terms
The study found that those who were already chronically ill had a slightly higher completion rate. However, the researchers believe that treatments Americans would choose near the end of their lives are different than what they choose to receive while on their death bed.
“Unfortunately, this disconnect can lead to unnecessary and prolonged suffering. Advance directives remain the primary tool for people to communicate their end-of-life care wishes and appoint surrogate decision makers, but improvements to the documents and completion process are clearly needed,” concluded Dr. Courtright.
*Note from EOLWA – the correct terminology is “Advance Directives” rather than “Advanced Directives”