A study published recently in JAMA Network highlights the need for improved pediatric advanced care for adolescents with terminal cancer. The research reveals a gap in understanding between parents and children when initiating and discussing critical conversations about end-of-life decisions.
“Advance care planning interventions are needed to improve families’ awareness and understanding of their teens’ end-of-life choices,” says principal investigator Maureen E. Lyon, Ph.D., a Children’s National Hospital clinical psychologist.
“Teens need to have a voice in their care and families are eager to know what their teens want, but those conversations can be difficult,” says Dr. Lyon. “Advance care planning interventions for parents and adolescents create a space where they can ask questions and be honest with each other.”
While families with adolescents with cancer are often spinning with the daily struggle of life, the authors say that clinicians presume that families understand adolescents’ treatment preferences for end-of-life care – and this can cause miscommunications. As has been seen not only in the pediatric setting, a lack of advance care planning is associated with increased hospitalization, poor quality of life, and legal actions.
The study involved a survey of 80 adolescent-family dyads (160 participants) from four tertiary care U.S. pediatric hospitals. From July 16, 2016, to April 30, 2019, the families were exposed to Family-Centered Pediatric Advance Care Planning for Teens With Cancer intervention sessions.
The results showed that family members’ understanding of their adolescent’s beliefs about the best time talk about end-of-life decisions was poor, with 86% of adolescents desiring an early conversation on the topic (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but with only 39% of families understanding this. This was particularly when it came to the topics of dying a natural death and being off life-support machines. Nevertheless, families’ did seem to have an excellent understanding of what was important to their adolescents in regards to wanting honest answers from their physician and understanding treatment choices.
The findings from the study can be found here in the article “Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care.”
Coronavirus has more people addressing their end-of-life planning. And for those who haven’t, it’s a great time to take it on.
People are traditionally rather hesitant to take the steps that experts suggest — creating an advance directive, writing a will and more — in part because they don’t want to ponder their own mortality. But the coronavirus pandemic has sharpened awareness and focused concern on this front. Several estate attorneys, online legal service providers and life insurers say they’ve seen an uptick in interest since the coronavirus hit.
Consider the advice of Jenni Neahring, a kidney specialist and palliative care doctor at St. Charles Hospital in Bend, Oregon who works daily with patients with chronic and serious illnesses. She says it’s better to make these decisions before an emergency to avoid putting extra stress and urgency on loved ones if something should happen.
If a patient is unconscious, health care professionals must spend critical time hunting down relatives or friends to help determine their preferred next steps.
Things have gotten harder with COVID-19, Neahring said, as no one is allowed in the hospitals with these patients and those on ventilators cannot speak for themselves.
“It has brought into sharp relief how necessary these conversations are and how much worse it is to have to do them at the end,” she said.
Here are a few things you can do now to help you and your loved ones later:
Start with picking your point people: who will make medical decisions for you if you cannot speak for yourself? This person is known as the health care proxy. They will be named in a legal document known as the durable power of attorney for health care.
Then choose someone who can oversee your financial affairs, such as paying your mortgage or other bills, if you are incapacitated. This person would be given financial power of attorney. It doesn’t have to be the same person as your health care proxy.
Choose someone you know well and trust for these roles. Pick a backup as well, in case your first choice is unavailable.
WRITE IT DOWN
After you’ve addressed the health care and financial representatives, consider writing a living will, or “advanced directive.” An advanced directive says exactly what medical care you do and do not want. Each state has its own advanced directive form; they can be found at the Medicare website.
If you are having trouble getting started, check out online resources such as The Conversation Project, Prepare for your Care or AARP’s website.
Consider writing a will to let people know what to do with your assets after you die and who you choose to be guardian of any children. Without a will, it won’t be up to you who raises your kids and your estate could end up in probate, potentially causing more headaches and costs for those you leave behind.
“The takeaway is while this is a current need, it’s always a need,” said Chas Rampenthal, general counsel at LegalZoom.
Many people look at end of life planning, including wills, estates and trusts, as an issue for the wealthy, but that’s untrue, Rampenthal said.
“It’s not about how much you have, it’s about making your wishes known,” he said.
And while life insurance isn’t always considered part of end of life planning, it can be an important step to protect your family financially. Term life insurance, a policy in place for a certain period of time, works best for most families, versus whole life, which is much more expensive and complex.
“This is just prompting people to eat their vitamins and do something they should be doing anyway,” said Peter Colis, cofounder and CEO of Ethos, an online life insurance company.
It’s not a great time to meet with people in person. But estate attorney Matthew D’Emilio said that most lawyers are able to arrange phone, video or other consultations during the pandemic. Many states have provided alternatives for witnessing and signing documents to cope with the social distancing rules.
If the idea or cost of seeing an attorney is too daunting, there are many online options for legal documents, some of which provide direct consultation.
SHARE YOUR WISHES
Let your friends and family know what you want, who is in charge and what documents you have. Provide a copy of critical paperwork to your loved ones. Share an advanced directive with your physician as well.
Neahring suggests keeping the name and number of your medical decision maker in your wallet for emergencies.
And while most details will be addressed in the legal documents, some experts suggest writing a short letter reiterating your preferences and reasoning to help provide clarity and comfort to your loved ones later on.
The coronavirus pandemic has brought death and dying to the forefront of the public’s consciousness.
As an anaesthetist working in a London intensive care unit, it is part of my daily life. Within a matter of weeks it has become everyone’s business.
Throughout my career I have been involved in the care of critically-unwell patients. All intensive care doctors accept that in spite of our best efforts, some people will not survive.
Whilst our primary goal is to support patients to recovery, we must also ensure that patients who are no longer benefiting from intensive care are supported too, so they may die without discomfort. This is true of any intensive care ward, at any time, but Covid-19 has further highlighted the importance of good end of life care, as we are seeing record numbers of very unwell people admitted to the hospital.
When the intensive care team is called to admit a patient, we try our best to establish their wishes with regards to treatments.
Have they thought about intensive care and life support? If their heart or breathing was to stop, have they thought about whether they would want the medical team to attempt cardiopulmonary resuscitation, for instance?
Whenever we can, we explain clearly what the treatment options are and the risks and benefits of each; we ask them what their own priorities are and answer any questions they may have. Then we adjust the treatment goals to best suit that individual patient.
But sadly, there are times where this communication is not possible and both the team and patient are robbed of that opportunity. That is why I am so passionate about what is known as advance or anticipatory care planning, or what I prefer to call advance life planning.
This is where people are given the opportunity to talk through their priorities and concerns for the end of life and translate them into a plan for their future care and treatment. This may include a Living Will (a legally-binding document also known as an Advance Decision or Directive) to refuse certain treatments and an Advance Statement to record other preferences for care.
People may also wish to nominate a trusted person to make healthcare decisions for them if they become unable to, using a Lasting Power of Attorney for Health and Welfare. These documents are then shared with healthcare professionals and loved ones.
I appreciate that in these uncertain times people can feel powerless and voiceless, but advance care planning can empower you and ensure your voice is heard clearly
All intensivists can recount a story in which, acting in good faith, a patient was put on to full life support, only to subsequently learn from loved ones that this action was against that patient’s end of life wishes.
This is not only heart-breaking for all involved, going against our core belief to ‘do no harm’, but it also denies that person the chance to be kept comfortable in a place of their choosing to say a meaningful goodbye.
This pandemic means we can no longer shy away from death. It is an inevitability of life and conversations about death should no longer be taboo.
It is now more essential than ever to talk to our loved ones about what a good death would mean to us as an individual.
For some, the most important thing might be remaining as pain-free as possible. For others, the priority might be to remain as lucid as possible until the end, or dying in a place of their choosing, whether that is at home or at a hospice, surrounded by their loved ones.
Some may want to accept all efforts to keep them alive as long as possible in spite of the risks. An Advance Statement can record information like this, and while it is not legally-binding like a Living Will, it should be taken into account if decisions need to be made on your behalf about your care and treatment.
I appreciate that in these uncertain times people can feel powerless and voiceless, but advance care planning can empower you and ensure your voice is heard clearly. It also assists medical professionals like myself to continue to act in the best interests of our patients by respecting their wishes.
By recording them as clearly as possible now and sharing them with your family and your GP, you will be far more likely to get the care and treatment that’s right for you when the time comes.
Know that if you do want to put plans in place, you are not alone.
The charity Compassion in Dying – for which I am clinical ambassador – aims to help people prepare for the end of life; how to talk about it, plan for it and record their wishes.
The MyDecisions.org.uk free site, which guides people through different scenarios so they can record their wishes for future care and treatment, has seen the number of completed Living Wills in the last month surge 160 per cent compared to the same period last year, and completed Advance Statements are up 226 per cent.
One might therefore conclude that the coronavirus is prompting people to consider and record their wishes for the end of their lives – some for the first time – and that is to be welcomed.
These are unsettling times, but know that healthcare teams in hospitals will continue to work hard to care for our patients, whether that means supporting them to a full or partial recovery or enabling them to have a dignified death.
For those who have already taken the time to document their wishes for the end of life, I am thankful. To those who are thinking about it, I appeal to you to do so.
Earlier this month, Cheryl Goldman, a retired high school teacher living on Long Island, called her son, Edo Banach, in Maryland. It seemed a routine chat until Ms. Goldman announced that if she became ill with Covid-19, she would decline a ventilator.
“I’m her health care proxy,” said Mr. Banach, who happens to be the president of the National Hospice and Palliative Care Organization. “Her perspective was, what’s the point? In all likelihood it’s not going to help, and she’d be taking a vent away from someone else.”
At 69, Ms. Goldman has emphysema and already relies on supplemental oxygen. She told me that she’d been following the news, including the grim statistics for older adults with chronic illnesses who require ventilators during extended stays in intensive care.
In such cases, “the number who leave the hospital is low, and it’s lower for someone with health problems like me,” she said. She also feared being separated from her family during a hospitalization and wanted, instead, to remain at home with hospice care. “It’s a pragmatic decision.”
Mr. Banach, leading the response of about a thousand hospices nationwide that are facing heightened demand and bracing for worse, appreciated her forthrightness. “It’s the kind of conversation everyone should be having with their loved ones,” he said.
In the best of times, it can be tough to get Americans to discuss and document their end-of-life wishes. Depending on the study, a third to two-thirds of adults haven’t drafted advance directives, the documents that outline which medical treatments they would accept or refuse and designate a decision maker to act on their behalf if they’re incapacitated.
“People think, I’ll deal with it in the future,” Mr. Banach said. But for thousands of older adults, the future may have arrived.
To date, there’s no clear evidence that older people are more apt to contract the new coronavirus, said Dr. Douglas White, a critical care specialist and the director of the Program on Ethics and Decision Making at the University of Pittsburgh School of Medicine.
“What we do know is that older individuals are more likely to experience very severe disease if they do become infected,” he said. “The data are sobering.”
That’s partly because most older adults have chronic conditions — heart or lung disease, diabetes, high blood pressure — known to intensify the virus’s effects. And they have less physiologic reserve — “less ability to rebound from an overwhelming illness,” Dr. White explained.
When seniors and their families engage in what’s called advance-care planning, they often focus on the D.N.R. question — whether patients would want to be resuscitated after cardiac arrest.
But because Covid-19 is a respiratory disease, the more pressing question will likely be whether a hospitalized patient who’s seriously ill will accept intubation and ventilation.
That initially involves a tube inserted down the throat, connected to a ventilator that pushes air into the lungs. When a patient has spent two weeks on a vent, doctors commonly perform a tracheostomy, creating a surgical opening in the windpipe that replaces the swallowed tube.
Long before the virus erupted, among people over 66 who spent 14 days in an I.C.U. on a ventilator, 40 percent died within a year of discharge. Now, “those numbers are too rosy for Covid,” Dr. White said, citing findings from Italy and Britain, where more than half of older patients on prolonged ventilation died.
A just-published JAMA article looked at coronavirus patients admitted to Northwell Health hospitals in and around New York City. Excluding those still hospitalized after the monthlong study, the mortality rate among patients over age 65 exceeded 26 percent, and almost all patients over 65 who needed mechanical ventilation during that period died.
That data can prompt frank exchanges. “If a patient is elderly and has significant medical issues, I’ll explain that a large proportion of people who become ill with Covid-19 and need a ventilator unfortunately will not survive,” said Dr. Kosha Thakore, the director of palliative care at Newton-Wellesley Hospital in Massachusetts.
Moreover, longevity is not the only priority, and sometimes not the primary one, for older people considering medical options. What will life look like if they do survive?
“After elderly people have been on a ventilator, they’ve often already developed physical debilitation, difficulty swallowing, bedsores,” Dr. Thakore explained. They frequently cycle in and out of hospitals with complications. Their deficits can be physical or cognitive or both, and are often permanent.
Even pre-Covid, after 14 days on a ventilator in an I.C.U., only about one in five older discharged patients went home. “The others end up in nursing homes,” Mr. Banach said. “Some may later go home, and some will die in the nursing home.”
Though older adults with Covid-19 may not require hospitalization or ventilation, the decisions they face if they do highlight the importance of reviewing advance directives.
A new study in JAMA Internal Medicine questioned 180 patients over age 60 with serious illnesses; most said they would trade a year of life if that meant they could avoid dying in an I.C.U. on life support.
But that kind of aggressive care is exactly what they might receive. “If you don’t let the system know your wishes, the system takes over,” Mr. Banach pointed out. Family members can feel lingering trauma if they’re forced to make life-or-death decisions for loved ones who never discussed what they wanted.
“Many older patients we’ve encountered with Covid-19 have opted not to undergo ventilation and an I.C.U.,” Dr. White said. “No one should impose that on a patient, though if there’s true scarcity, that may arise. But patients might choose it for themselves.”
If older people have paperwork stashed in a drawer or safe, now is the time to unearth it and see if their instructions still reflect their values. If so, scan the document and send it to family members and doctors, Mr. Banach advised.
But for those who never got around to drawing up advance directives, appointing a decision maker — and telling that person what’s acceptable and what’s not — is ultimately more crucial. In emergencies, doctors probably won’t flip through documents to learn patients’ wishes; they’ll ask family or friends.
Mr. Banach’s counsel: “Take out your phone and do a video selfie: ‘This is who I am. This is the date. This is what I want.’ Send it to your friends and relatives. That’s enough.”
Many hospitals and health systems have developed workarounds when documents require signatures or witnesses; some are also doing palliative-care visits via telemedicine.
Dr. Gregg VandeKieft, a palliative care specialist with Providence Health on the West Coast, recently spent half an hour on Zoom talking with a patient’s sons about her end-of-life care. Dr. VandeKieft and a nurse were in Olympia, Wash.; one son was in Alaska and two elsewhere in Washington. “It felt not all that different than if we’d been in the same room,” Dr. VandeKieft said.
The coronavirus pandemic may spur more such conversations. In Los Angeles recently, Brie Loskota and her husband contacted close family friends, a couple in their 70s, asking about their well-being, offering to FaceTime, and then inquired: “If you got sick, is there anything we should know?”
The older couple, one of whom has a neurodegenerative disease and has already experienced mechanical ventilation, responded that they both wanted to avoid hospitalization and to die at home.
“It was a relief to be told,” said Ms. Loskota. “It’s not less heartbreaking, but it lets us make a decision with them in mind. It led my husband and me to talk about it for ourselves.” They’re in their 40s and have not yet drafted advance directives.
Coronavirus prompts more people to consider, or revisit, end-of-life care
By Naomi Martin
The coronavirus pandemic has pushed the fact of human mortality to center stage, prompting scores of people, not just doctors, to consider or revisit their end-of-life wishes. Complicating matters, the pandemic has introduced ventilators — a life-support tool seldom discussed outside hospitals before the outbreak — into mainstream Americans’ worries.
Amid talk of hospitals rationing ventilators, some people are updating their living wills or proxies to say that they do want a ventilator to extend their lives, if necessary. Others, largely elderly people and those with serious health conditions, are making it clear that if their odds aren’t great, they wouldn’t want the machine to keep them alive.
“In the two-and-a-half years we’ve existed, we’ve never answered questions on ventilators, but now they’re pretty common,” said Renee Fry, cofounder of Gentreo, which offers low-cost estate planning.
It’s urgent that people clarify their wishes to family now, doctors say, because the coronavirus can progress quickly, making patients suddenly so sick that to stay alive, they must be put in a medically induced coma and on a ventilator.
In that moment, they may not have a chance — or be able — to fully consider the potential consequences such as brain and organ damage, or needing to live bed-bound with a feeding tube.
Most people who contract the coronavirus don’t become seriously ill, and only a small portion require intensive care. However, early data suggest that perhaps 50 percent to as many as 80 percent of coronavirus patients who are placed on ventilators don’t survive.
“The reality is even if we have enough ventilators, that’s not going to save most people,” Dr. Breanne Jacobs, an emergency room doctor and professor at George Washington University School of Medicine who wrote about the issue.
Most elderly people would prefer to pass away at home with family rather than alone in a hospital, she said, so “if they understand a ventilator is not going to miraculously get them back to where they were, a lot of people would probably change their mind about allowing doctors to do intubation.”
The crisis has prodded many people to take up the oft-deferred task of discussing end-of-life goals. Thousands have downloaded a new coronavirus-related guide from The Conversation Project, which helps people broach the uncomfortable topic.
Doctors advise against using medical terms, like ventilator, in documents, because that’s not helpful to clinicians aiming to follow someone’s overarching wishes. Instead, they say, people should focus on big-picture values.
“A lot of people say, ‘I don’t want to be intubated,’ but they mean they don’t want to be intubated for the rest of their lives,” said Suelin Chen, cofounder of Cake, which offers free end-of-life planning services. “If it were just to recover for a few days, they’d want that.”
Specialists say everyone over 18 should, at minimum, record their health care proxy, which in Massachusetts requires two witnesses. If that’s impossible during social distancing, people can complete a “trusted decision-maker” form, which is better than nothing.
And they should discuss key questions with their chosen person before an emergency, such as what makes life worth living, how much suffering are they willing to endure, and for what odds of success.
These should be ongoing conversations, as people’s wishes change with age and health status, they said.
“This isn’t just doom and gloom — it’s how do you want to live your life all the way through the end?” said Kate DeBartolo, senior director at The Conversation Project.
The downsides of inaction can be high. Someone may receive procedures they don’t want, as hospitals can be obligated to try to keep someone’s heart beating, regardless of whether their brain is alive. Without clarity, family members may disagree over stopping life support, prompting infighting and guilt. Planning reduces depression in grieving relatives, a 2010 study found.
In some instances, family members may have to go to court to take a loved one off life support.
“With my mom, I always say it was the greatest gift that she gave us,” said Patty Webster, 50, a Conversation Project community engagement leader, whose mother, a hospital chaplain, made her wishes so clear that when she suffered two strokes, her family all agreed when the heart-wrenching time came to stop prolonging her life.
“She had an end-of-life that she wanted,” Webster said. “She had friends and family by her side, laughing and crying, together with her when she took her last breath.”
Amid coronavirus, Webster revisited the topic with her family. She shared an article by a doctor about the damage that ventilation can cause. Afterward, her in-laws, in their 80s, emailed to say they wanted to live to 110, but only if “cognizant, thinking, and communicative,” and likely wouldn’t want ventilators.
Webster and her husband, meanwhile, would be willing to try temporary ventilator treatment for a chance to remain in the lives of their children, 18 and 20, in an active, meaningful way.
People who have started end-of-life planning during the crisis say it offers a measure of control. That doesn’t mean thinking about death gets any easier.
“It’s terrifying to think about when you flat-line, that’s the end,” said Chris Haynes, 48, a South End restaurant publicist who recently crafted his will, but can’t bring himself to envision his end-of-life care. “It just shakes you to your core.”
Pushing past that discomfort can make a huge difference to families and doctors, said Slavin, the MGH resident. In one recent case, he said, a health care proxy for a critically ill coronavirus patient knew that the patient wanted to try a few days on a ventilator. Then, if her condition didn’t improve, she would switch to hospice care.
“It’s hard whenever a patient is dying,” Slavin said, but “it felt like we were doing right by this patient and her family.”
Lately, Slavin has discussed the coronavirus by phone with his primary care patients who have advanced cancer, dementia, or heart failure. He describes the potential harms and low odds they’d face on a ventilator. He recommends that, if infected, they not pursue intensive care. Most patients agreed, he said.
For Slavin personally, the calculus is different. At 33 and healthy, he faces a good chance of recovery if infected and would want to try every option to survive and build a future with his wife.
“At another point in my life,” he said, “I might say, ‘I want a time-limited trial of intensive care, then shift to making comfort the top priority.’ ”
By Megan L. Ranney, Jeremy Samuel Faust and Chuck Pozner
When there are no ventilators to be had, no intensive-care-unit beds to be occupied, what will hospitals do for elderly patients who have run-of-the-mill respiratory failure? Or for patients with heart attacks or any of the innumerable dire reasons that people need emergency care?
Now more than ever, medical directives about end-of-life care are essential, especially for the elderly, who in the coming weeks and months may find themselves requiring emergency attention, whether for covid-19 or some other illness. With the prospect that ICU beds could soon be in short supply — as they already are in parts of New York City — it is vital for physicians to know, and to honor, every patient’s explicit wishes.
In the absence of that information, many patients may well be assigned ICU beds or placed on ventilators even though they might not ever have wanted any “heroic measures” taken if they had been consulted before falling ill.
We physicians are trained to have these conversations and to have them in ways that reveal patients’ wishes and priorities, while not unduly influencing them. But the conversations are rarely simple.
For one thing, ideas that are second nature to physicians are often foreign concepts for everyone else. Terms such as “mechanical ventilation,” “extracorporeal membrane oxygenation” and “cardiopulmonary resuscitation” seem to fly off our tongues. Yet even when we translate seemingly impenetrable jargon — saying “breathing machines,” “lung bypass” and “chest compressions” instead — we frequently fall short of plainly explaining the patients’ realities. Outcomes are poor much of the time, covid-19 or not. But just because there may be little hope does not mean there is none.
With millions of people now seeing almost nonstop news coverage about the covid-19 onslaught, many may be privately thinking about their own wishes, or considering asking family members about theirs. That may make the conversation with doctors less unexpected and therefore a little less jarring.
Others who thought they had long ago settled on their end-of-life preferences might, in light of the pandemic, have begun to reconsider. For that reason, we urge both health-care workers and families to reopen conversations on the subject with patients and loved ones before they are in the throes of life-threatening illness. We also urge patients and families to record these preferences on paper, with medical orders or living wills, and have them ready for communication with their doctors.
And doctors must respect those wishes. Even under normal circumstances, too often patients’ own explicit choices to forgo heroic measures are ignored. They end up receiving care they never wanted, and great harm is done. That must stop.
With infection concerns limiting access to emergency departments and ICUs, families may not be able to have these talks when patients are in treatment. The conversations might be most relevant for residents of skilled nursing facilities and long-term-care facilities, and other vulnerable individuals for whom life on a ventilator may be crueler than it is compassionate. But everyone needs to think about these questions. No one is immune.
As physicians, our approach matters. We must offer to have these conversations, never impose them. And the invitations must be both welcome and accepted. We hope to never have to make life-or-death decisions based on the availability of a ventilator, and simply by bringing forth the thoughtful wishes of patients, the need to make such heart-rending choices may be postponed indefinitely.
We cannot fully control how many people will be infected in the coming weeks and months. But through discussions with patients and their families, we can respect their wishes, potentially save lives and — most important — make difficult decisions in the light of day, not in the heat of the moment.
Long before she contracted COVID-19 at a Kirkland, Washington, nursing home, Barbara Dreyfuss made sure to document the wishes that would govern how she died.
The medical directive she signed last year at the Life Care Center outside Seattle called for no resuscitation if her heart stopped, no machine to help her breathe. The 75-year-old, who suffered from lung disease and heart problems, had been on a ventilator for two weeks in 2016, a grueling experience she didn’t want to repeat.
“Mom’s form said, ‘Do not resuscitate, allow natural death,’” said son Doug Briggs, 54. “That was her choice.”
So after Dreyfuss fell ill in late February, becoming one of the first U.S. patients sickened by the new coronavirus sweeping the globe, her family reluctantly allowed doctors to halt lifesaving treatment in favor of comfort care.
Dreyfuss, a once-vivacious feminist and activist, died March 1, two days before tests formally confirmed she had COVID-19. But her decision to confirm her wishes in advance could serve as an example for growing numbers of individuals and families feeling new urgency to pin down end-of-life preferences and plans.
In the weeks since the coronavirus has surged, sickening nearly 165,000 people in the U.S. and killing more than 3,000 as of Tuesday morning, interest in advance care planning has surged, too. More than 4,000 requests poured in during the week of March 15 for copies of “Five Wishes,” an advance directive planning tool created by the Tallahassee, Florida, nonprofit agency Aging with Dignity. That’s about a tenfold increase in normal volume, said Paul Malley, the group’s president.
“We started hearing from families that they want to be prepared.” said Malley, noting that more than 35 million copies of the living will were already in circulation.
Stephanie Anderson, executive director of Respecting Choices, a Wisconsin-based group that provides evidence-based tools for advance care planning, said her organization put together a free COVID-19 toolkit after seeing a spike in demand.
“We had hundreds of calls and emails saying, ‘We need help having these conversations now,’” she said.
The tools and documents aim to help adults of all ages plan for their medical, personal, emotional and spiritual care at the end of life with a series of thoughtful questions and guides.
Malley said the COVID-19 crisis has spurred interest from two primary groups. The first: people immediately concerned that they or someone they love will contract COVID-19.
“They’re saying, ‘Will we know what Mom or Dad wants?’” Malley said. “They’re motivated by the urgency of a health crisis around the corner.”
New requests also are coming from families sidelined at home by shelter-in-place orders, he said, as they spend relaxed time with loved ones and have more breathing room for such discussions.
“Their family is playing more board games together and catching up on movies,” he said. “Advance care planning is falling into that bucket of that thing people wanted to do when they had time.”
These conversations can be difficult enough during ordinary times, but the crisis has provided an urgent new reason to start talking, said Anderson. “We’re hearing people are really worried,” she said. “I’ve heard the word ‘terrified’ about what’s happening in the country.
It’s more than just filling out a document, Anderson emphasized. The conversations about preferences and values can help provide real relief. “They want somebody to talk about these things,” she added.
Eliciting end-of-life preferences in advance also could help ease the strain on the health care system as doctors grapple with how best to divvy up care amid dwindling medical supplies and equipment.
“We’ve always had the requirement that people get asked about an advance care plan, but now we are taking that incredibly seriously,” he said. “Because we need to know if you get much worse, what would you want?”
One new and potentially controversial question his hospital is considering would ask patients whether they’d be willing to forgo a lifesaving ventilator for someone else in a crisis. “Would you want to get in line for those crucial care resources?” Wynia said. “Or are you the kind of person who would say, ‘I’ve had a good life and I’ll let other people get ahead of me in line’?”
The most “ethically defensible” way to make a triage decision is to ask patients in advance, Wynia said. “By the time you’re asking for volunteers, these people can’t talk to you anymore.”
But some experts worry that asking such a question crosses a line, even during an emergency. Malley balked at the thought of asking COVID-19 patients to weigh their lives against others, fearing it could pressure vulnerable people — the elderly, disabled and others — into decisions they don’t really want.
“I think we shouldn’t resort to coercive questions,” he said. “I don’t think anyone should be made to feel they have a duty to die.”
Even if you’ve made advance care plans in the past, Malley and Wynia emphasized the need to reevaluate them in light of the COVID-19 scare. If you’ve documented your wishes to decline CPR or intubation because of a primary disease, such as cancer, consider whether you still want to forgo such treatment for the novel virus. Similarly, if you’ve opted for full treatment — prolonging life by all measures — make sure you’ve considered the potentially devastating aftermath of mechanical ventilation for COVID-19.
“For this condition, people who need to be on a vent for COVID-19 are staying on it for two weeks or three, and they may have very severe lung disease afterward,” Wynia said.
Indeed, Barbara Dreyfuss’ two-week stint on a ventilator shaped her answer to questions on the medical directive that guided her care, her son said. “Because of what had happened to Mom four years ago, we had already sat around as a family and discussed this,” Briggs said.
That doesn’t mean it was easy, said Meri Dreyfuss, 62, Barbara’s sister, who called stopping active treatment “a hellish decision.” But as the infection in her lungs worsened, Barbara Dreyfuss was clearly in pain. “I was like, ‘Oh, my God, I can’t stand the thought of her suffering,’” Meri Dreyfuss recalled.
Late on the evening of March 1, Briggs was with his mother in her isolation room. Nurses asked him to step out because he had exceeded the allowed contact time. But when he looked back, monitors showed that his mother’s vital signs were dropping fast.
Nurses allowed him to rush back into the room. Dressed in a hospital gown, mask and gloves, his cellphone wrapped in a plastic bag, Briggs quickly turned on the ’60s music his mother loved. Nurses had increased doses of drugs to decrease her air hunger and anxiety.
“Somewhere between ‘Stand by Me’ and ‘Here, There and Everywhere,’ my mom passed away,” he said.
At the center of a global crisis, Dreyfuss’ earlier decision allowed her to have control over how she died.
“It felt like she was peacefully sleeping,” Briggs said. “She just stopped.”