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 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”
With the help of a palliative care team, the author’s terminally ill mother dies on her own terms.
At my mother’s recent memorial service, lots of people asked to speak. We got to hear from friends and family who had known her from each of the eight decades of her vibrant life. While the details varied, there were important consistencies across all of the wonderful memories that were shared: her great warmth, infinite curiosity, pioneering spirit, and utter inability to tell a joke. But most of all during the formal remarks and informal conversations that followed, everyone in the standing-room-only crowd recalled my mother’s fierce independence and drive to do things “her way.” And nowhere was this drive better demonstrated than in her determination to go out on her own terms. For this she had needed my help, and I very nearly blew it.
When—just a few days after her eighty-ninth birthday—my mother was diagnosed with a colorectal mass (we would later learn it was cancerous), she restated to me what I long knew to be her fervent wish: no treatment of any kind beyond symptom relief. NO invasive procedures, NO chemo or radiation, NO life-prolonging treatments. NONE! She wanted only one thing: to spend the rest of her days, however many or few there were to be, in her apartment in her lively and supportive community. My job was simply to help make sure her wishes were honored. As it turned out, this was not so simple at all. Just days after the initial diagnosis, despite my mother’s long-standing, clearly stated, and just-repeated wish, I found myself reluctantly making an appointment for a preoperative examination with a surgeon for a procedure to reroute her intestine around the mass.
How had we ever come to even consider this?
The Limited Option
For as long as I could remember, my mother had made it clear that she did not value longevity for longevity’s sake. Her greatest fear had always been living past the point when she felt good about being alive. “Can you believe it?” a friend or relative would sometimes exclaim in delight about a markedly diminished elderly relation. “She just celebrated her ninety-sixth birthday!” In response, my mother would shudder in dismay and reply that she hoped that she would not face a similar fate.
Thus, from the instant she learned about the colorectal mass, my mother told every one of the endless series of doctors who paraded by her bedside that she was really OK with the situation, as long as she could opt to do nothing about it and have a peaceful end when the time came. Though increasingly weak as the days wore on, she remained clearheaded and articulate. And when her voice faltered slightly, or when she got tired of repeating herself, I spoke up for her, and she would nod vigorously in agreement.
Nonetheless, on the fourth day in the hospital, a surgeon arrived at my mother’s bedside with a different agenda: to discuss the risks and benefits of two surgical options for addressing the threat posed by the mass. One option was to surgically remove the mass entirely, while a second option involved rerouting the intestine around the mass, which would otherwise be left intact. Since the mass was growing slowly, the surgeon explained, and since there was no sign of cancer anywhere else, my mother was a good candidate for the second, more limited surgery, which was less invasive and promised a speedier recovery.
In fact, the surgeon confidently pronounced my very frail mother an “excellent” candidate for this surgery and predicted a relatively insignificant recovery time with only minimal pain and discomfort. But—oh yes, there was one more thing worth mentioning: The “limited option” involved a colostomy. A hole would be created surgically in my mother’s belly, out of which stool would exit into a pouch. The pouch would need to be emptied regularly (once a day or so) to avoid leakage. My mother would need to find a well-fitting pouch to minimize the risks of skin irritation, the extent of odor, and the possibility of leakage. And she’d need to learn to change the bag (it takes practice), adjust her already limited diet, and perform the necessary skin care. Besides this, there would be anxiety about whether the bag would bulge visibly or, worse yet, soil her clothing. Yet the surgeon was certain that, with the new technologies and products for colostomies that were available, my mother would adjust in no time.
When I asked what would happen if my mother declined surgery altogether, the surgeon provided a chilling answer. Doing nothing, he told us, would cause her colon to rupture, followed by sepsis. This would be accompanied by acute and possibly prolonged abdominal discomfort and eventually excruciating pain. He painted a graphic picture of what would be happening inside her body to cause this pain. It would be a gruesome way to die. No way would he ever let his mother suffer through that, the surgeon pronounced. His face suggested he was horrified to think that we might even consider it.
In the face of the surgeon’s specialized knowledge and the high degree of confidence he projected, our certainty about my mother’s long-abiding wish waivered. I, in particular, struggled to reconcile what this expert was telling us with my admittedly vague understanding of the alternative: palliative care.
The surgeon left the room, and my mother began to weep silently. I could not remember when I had last seen her cry, but it had been decades at least. Her hope of a dignified death had been dashed, and she found herself facing a choice between excruciating pain or surgery with a colostomy, with all of the attendant ramifications. She clearly feared she might end up one of the “lucky ones” who “get to live”—in an increasingly physically and cognitively feeble state—to ninety-six!
I reluctantly scheduled a pre-op appointment for later that month, but I also reached out to a close friend who specializes in research on patient engagement. She encouraged me to probe more deeply the surgeon’s predictions and assertions about the likely impacts of undergoing surgery, as well as the consequences of declining it. What exactly did a “relatively easy” recovery mean for an eighty-nine-year-old woman who weighed only 118 pounds? How would a colostomy actually affect the quality of her life? Could the pain of a ruptured colon be effectively controlled by a clinician who specialized in palliative care? I sought answers to those questions.
I started by investigating the surgeon’s assurances regarding the simple-to-use and odor-free technologies that were available for colostomy patients, since I knew that this would be of particular concern to my mother. We faced the added complication of her Parkinsonism (a condition related to Parkinson’s disease that, in my mother’s case, left her unable to stand or walk), for which she needed the services of a full-time home attendant.
I called M. R., one of my mother’s former aides, who knew her needs, abilities, limitations, and sensitivities at least as well as I did. I trusted M. R. to give me straight answers. I asked if she had had any experience with the colostomy paraphernalia and if she thought my mother would be able to change the bags as easily as the surgeon had suggested. If she couldn’t, were home attendants allowed to assist with this activity? God forbid that my mother would have to end up in a nursing home just because of a colostomy.
M. R. assured me that Mom would most likely be able to change the bags herself, though she offered to check on whether an aide would be permitted to help. But then she got to the more central issue: “You know your mother,” she told me. “You know how much she cares about personal hygiene. She will not like the smell. Even if it is not a strong smell, she will smell it. They will tell you there is no smell, but I will tell you your mother will smell it. It will bother her. A lot.”
M. R. went on to describe having cared for an outgoing and sociable retired lawyer who became so self-conscious following his colostomy that he had become “a recluse.”
For my mother, this would be a truly catastrophic blow. Formerly very active and outgoing, she had already lost a great deal, including her mobility and much of her independence, to Parkinsonism five years earlier. Nonetheless, she remained surrounded by a large cadre of devoted and lively friends—some of whom she had known for decades. When I visited her in the unique Upper West Side community in Manhattan that had been her home for fifty years, we would sit on the bench in front of her building, and, without exception, an average of three or four people per hour would stop to sit and chat. Her apartment door was never locked, so friends and neighbors were constantly popping in to play Scrabble, watch a film, discuss a book, or bemoan the deteriorating state of the world.
Over the previous five years, my mother had already begun to feel that her life had been irremediably diminished. Aside from the Parkinsonism, she was growing extremely frustrated with the continuous, if gradual, cognitive decline associated with “normal aging” and the impact it was having on her memory and her ability to use her computer, cell phone, television, and other mainstays of modern life. The prospect of social isolation or other additional losses was more than she should have been expected to bear.
This bleak outlook strengthened my resolve to learn more about whether palliative care could be effective against the specific risks of “doing nothing” as described by the surgeon. The following morning, as my mother was preparing to be discharged from the hospital, a doctor arrived to check her status. We mentioned that she was happy to be headed home, and that our next step would be to identify a palliative care specialist who might be able to tell us whether and to what degree the dire consequences of declining surgery could be mitigated.
As luck would have it, the doctor told us that he was trained in palliative care. He immediately validated my mother’s decision to reject treatment and offered his unequivocal assurance that she would not need to face an excruciating end. He explained that he could immediately sign her up for home-based hospice, which would include palliative care. This was the first that we had heard of this program.
The Magic Words
Looking back, I can’t say whether the surgeon who advised my mother was intentionally engaging in scare tactics. He probably wasn’t. Yet his highly subjective, rosy picture of life after surgery and his ghastly view of the alternative were based on his own values, fears, and preferences rather than those expressed by my mother, an elderly woman who above all else feared a longer and increasingly limited existence. Moreover, he was either ignoring, or ignorant of, the potential mitigation of pain and suffering that could be offered through effective palliative care.
Of course, at that moment we were equally ignorant about what palliative care entailed, and how effective it could be for those who decline other treatments.
I’ll never understand why the option of hospice with palliative care was not presented to us early in my mother’s hospital stay, given her very clear statements of her wishes when she was first told of the existence of the mass. It was only when we finally said the seemingly magic words—“we would like to confer with a palliative care doctor”—that we learned that my mother’s wishes could in fact be granted. I shudder to think about what might happen to people who are less persistent or do not know what to ask.
I later learned that this omission was not merely an unfortunate oversight, but a potential failure to comply with Chapter 331 of the Laws of 2010 in New York State, commonly known as the Palliative Care Information Act. This law requires that all patients facing an illness or condition that is reasonably expected to cause death within six months be given counseling concerning palliative care and end-of-life options. The New York State Department of Health webpage devoted to the act explains that the purpose of the law is to “ensure that patients are fully informed of the options available to them…so that they are empowered to make choices consistent with their goals for care, and wishes and beliefs, and to optimize their quality of life.”
The law states that it is the responsibility of the “attending health care practitioner” to provide the necessary information and counseling. In my mother’s case, I do not know which of the countless doctors who checked in throughout her hospital stay met that description. Clearly that aspect of the law has to be clarified to produce the desired effect. Perhaps what’s needed is the equivalent of a Miranda warning for patients facing terminal illness: You are not required to accept treatment, and if you opt to decline it, a palliative care doctor will be provided for you who will ensure that your pain is fully and effectively managed. But such a requirement would be just the start.
For a law like New York’s to be truly effective, hospitals need well-staffed palliative care departments with team members who routinely visit seriously ill patients and who can systematically present palliative care options, both as part of and distinct from hospice. In addition, physicians who treat patients with potentially terminal, or even significantly life-limiting, diagnoses should understand palliative care treatment well enough to be able to discuss it comfortably and meaningfully. Training in medical school and through organizations such as the Center to Advance Palliative Care can help achieve this goal. Otherwise, there will always be situations like the one my mother and I faced, when a patient’s choices are inadvertently circumscribed by the limitations of one particular specialist’s knowledge, assumptions, or beliefs.
It might not be easy to get practitioners to accept a patient’s request for palliative care as a rational and legitimate alternative to more aggressive treatment, however. A colleague who is researching informed consent recently told me that a survey (not yet published) at four hospitals showed that 45 percent of doctors believed that they are in a better position than patients to decide what their patients need.
My mother would have had some choice words for those doctors. She would have pointed to the last six months of her life as evidence of the soundness of her choice. Spared the aftermath of a surgery she did not want, my mother ate and felt better than she had in months. Everyone commented on how well she looked and how upbeat she seemed. She took in several museums and a show. We strolled through Riverside and Central Parks and spent a glorious day at the New York Botanical Garden. She enjoyed visits from friends and family members, including some whom she had not seen in many years. Capping it all was a show of her beautiful watercolors, attended by over a hundred neighbors, friends, and relatives. It was entirely fitting that she chose to donate the proceeds from the sale of her paintings that day to Morningside Retirement and Health Services, a nonprofit organization associated with her co-op whose services had proved invaluable to her as she “aged in place.”
Throughout this period, my mother’s outstanding hospice team delivered on the promise of compassionate, effective palliative care. The team was careful to include her, her aides, and me in all discussions of her care. They told us what to expect and educated us about what developments might signal the need for a change in regimens. This was certainly not “doing nothing.” Palliative care in my mother’s case involved active monitoring and managing of her diet, digestion, and medications to maximize her comfort and quality of life. My mother felt engaged, respected, and supported—and she experienced virtually no physical pain.
About two weeks before her death, my mother began to feel very weak. She became increasingly frail and showed signs of anxiety. She stayed in bed for a couple of days, something entirely new for her. She called me a couple of times to tell me she was certain that “this was the end.” She stopped being interested in visitors and even in phone calls. Then one day she experienced an extremely sharp pain as her home attendant was transferring her from a chair to her bed. The hospice team provided medication that eliminated both her anxiety and the pain.
A few evenings later, I woke her from a nap to ask her if she wanted dinner. She said she thought she might, so I gave her a dose of morphine in anticipation of moving her to the dinner table in another half-hour. When I went to get her, she demurred: “Why would I want to move anywhere when I am so comfortable right here?” Those were her last words. She fell back asleep, and sometime that night she lost consciousness. Over the following two and a half days, in keeping with her wishes, she was heavily medicated as she slowly slipped away.
The evening before she drew her last breath, her nurse stopped in, gently stroked her brow, and spoke to her. Mom showed no signs of hearing her. Her nurse assured us that my mother was in no pain and encouraged me to keep speaking to her, which of course I did. I told her how much I loved her, and that I was truly grateful that she had been so clear about what she wanted. For it was because of the clarity of her wishes, and her steadfast and openly expressed desire to see them honored, that together we were ultimately able to get it right.
by Sara Manning Peskin, M.D., from The New York Times
You and I, one day we’ll die from the same thing. We’ll call it different names: cancer, diabetes, heart failure, stroke.
One organ will fail, then another. Or maybe all at once. We’ll become more similar to each other than to people who continue living with your original diagnosis or mine.
Dying has its own biology and symptoms. It’s a diagnosis in itself. While the weeks and days leading up to death can vary from person to person, the hours before death are similar across the vast majority of human afflictions.
Some symptoms, like the death rattle, air hunger and terminal agitation, appear agonizing, but aren’t usually uncomfortable for the dying person. They are well-treated with medications. With hospice availability increasing worldwide, it is rare to die in pain.
While few of us will experience all the symptoms of dying, most of us will have at least one, if not more. This is what to expect.
The Death Rattle
“The graves are full of ruined bones, of speechless death-rattles” (Pablo Neruda)
We suspected the patient wouldn’t survive off the ventilator. A blood clot had crawled up one of the vessels in the back of his brain, blocking blood flow to the area that controlled alertness. He would die from not being awake enough to cough.
The beat of the death rattle began when the breathing tube was removed and continued until life was done. It was a gurgling, crackling sound, like blowing air through a straw at the bottom of a cup of water. The average time between the onset of death rattles to death itself is 16 hours. For him, it was six.
The death rattle is a symptom of swallowing dysfunction. Normally, our tongue rises to the top of the mouth and propels saliva, liquid or food backward. The epiglottis, a flap in the throat, flops forward to protect the swallowed substance from entering the airway.
In the dying process, the symphony of swallowing becomes a cacophony of weak and mistimed movements. Sometimes the tongue propels saliva backward before the epiglottis has time to cover the airway. Other times, the tongue fails to push at all and saliva trickles down the airway to the lungs in a steady stream. The death rattle is the lungs’ attempt to breathe through a layer of saliva.
Despite the sound’s alarming roughness, it’s unlikely that the death rattle is painful. The presence of a death rattle doesn’t correlate with signs of respiratory distress.
As often happens in medicine, we treat based on intuition. To lessen the volume of the death rattle, we give medications that decrease saliva production. Sometimes, we are successful in silencing the rattle. More of the time, we placate our instinctive concern for a noise that probably sounds worse than it feels. Without hurting our patients, we treat the witnesses who will go on living.
“You villain touch! What are you doing? My breath is tight in its throat” (Walt Whitman)
The patient was a wiry woman in her 80s who had smoked for seven decades. Cigarettes turned her lungs from a spongelike texture to billowing plastic bags that collapsed on themselves when she exhaled. It was like trying to scrunch all the air out of a shopping bag. Air got trapped.
Air hunger — the uncomfortable feeling of breathing difficulty — is one of the most common end-of-life symptoms that doctors work to ease.
The treatment? Opiates, usually morphine.
People sometimes ask why the treatment for painful breathing is a medication that can depress breathing. You’d guess that opiates would worsen air hunger.
The answer hinges on defining why air hunger is uncomfortable in the first place.
Some researchers think the discomfort of air hunger is from the mismatch between the breathing our brain wants and our lungs’ ability to inflate and deflate. Opiates provide relief because they tune our brain’s appetite for air to what our body can provide. They take the “hunger” out of “air hunger.”
Others believe that the amount of morphine needed to relieve air hunger may have little effect on our ability to breathe. Since air hunger and pain activate similar parts of the brain, opiates may simply work by muting the brain’s pain signals.
The patient traded her cigarettes for a breathing mask when she came to the hospital. She quit smoking for the umpteenth time and made plans to go home and live independently again. A few days later, her thin frame tired. She died in hospice.
“Do not go gentle into that good night” (Dylan Thomas)
My grandfather screamed two days before he died. “Open that door and let me out! Right now! It’s a travesty! Open that door!”
It was the scream of a lost child. My grandfather’s eyebrows, which had been lost over the years from the outside inward so that only a centimeter of long gray hairs near the middle remained, tilted toward each other.
Until then, we were preparing for missing and absence. Not for an agitated delirium. Not for rage.
A famous poet once wrote that “dying is an art, like everything else.” For hospice doctors, the artists of death, terminal agitation is the subject’s revolt against the shaper. It’s uncommon, but it can be difficult to watch when it happens.
Instead of peacefully floating off, the dying person may cry out and try to get out of bed. Their muscles might twitch or spasm. The body can appear tormented.
There are physical causes for terminal agitation like urine retention, shortness of breath, pain and metabolic abnormalities. There are medications that quell it. Yet it’s hard to discount the role of the psyche and the spiritual.
People who witness terminal agitation often believe it is the dying person’s existential response to death’s approach. Intense agitation may be the most visceral way that the human body can react to the shattering of inertia. We squirm and cry out coming into the world, and sometimes we do the same leaving it.