Category: Healing and Helping Professionals

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Sometimes a ‘Good Death’ Is the Best a Doctor Can Offer

Despite everything we do, we have lost so many battles with Covid-19

By Dr. Hesham A. Hassaballa

There has been so much clinician distress with the Covid-19 pandemic. So many physicians, nurses, and health care professionals have suffered physical, emotional, and moral difficulty taking care of severely sick patients. Some have even committed suicide.

As an ICU physician, I feel this firsthand and believe the reason for the anguish is that we, as critical care doctors and nurses and health professionals, are used to making a difference in the lives of our critically ill patients. Yes, we do lose some patients despite all that we do. But, for the most part, the majority of the patients we see and care for in the ICU get better and survive their critical illness.

Covid-19 has upended all of that.

Before Covid, I would not think twice about placing someone on a ventilator. It is a life-saving measure. With Covid, however, many patients who go on ventilators never come off. This is very distressing.

It is just so hard to try and try and try — spending many waking and sleeping hours — to help these patients pull through, only to have them die on you. Many times, the deaths are expected. Sometimes they are not, and those deaths are the most difficult to bear.

We are used to seeing death in the ICU. It is inevitable that some patients, despite all that we do, are going to die. With Covid, however, it is different. So many have died, and what makes it so hard is that these people are dying alone. Their families are only left to watch them die, if they so choose, on FaceTime or Skype. I’ve lost a daughter to critical illness. I cannot imagine the horror of not being able to be there at her side.

I was speaking to a fellow ICU doctor, and he told me that it seems all he is doing in the ICU is ensuring a “good death” for his patients, and this has deeply bothered him. He is not used to this amount of death. None of us are. It is very, very hard.

Is there any such thing as a “good death”?< It seems oxymoronic that the words “good” and “death” can be juxtaposed. As doctors, our whole existence is to prevent our patients from dying. So, in one sense, there is no such thing as a “good death.” To be sure, I have seen plenty of “bad deaths” in the ICU. Of course, those include patients whose death was unexpected. At the same time, there are patients who we know (despite everything we do) will not survive. In those cases, we do our best to make sure the patient does not suffer. If a patient dies while suffering pain or distress, or they get care that is not consistent with their values and wishes, then — to me, at least — this constitutes a “bad death.” But, indeed, there can be a “good death.”

None of us knows when or where we are going to die… If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome.

As a doctor, especially an ICU doctor, it is awesome to see our patients do well and survive critical illness. It gives me an indescribable feeling of warmth and joy, and it is the fuel that keeps me going for a very long time. This joy has only been amplified during the Covid crisis. Watching one of our patients — who was very sick and I thought for sure going to die — walk out of the hospital on his own made me absolutely ecstatic.

Sadly, however, that experience has been fleeting with Covid, which has been so disheartening. Yet, even in death, there is an opportunity to do good. Even in death, we can do all that we can to ensure our patients die in peace, without pain, without suffering, and with the dignity they deserverecent study found that approximately 25% of patients experienced at least one significant pain episode at some point in the last day of life. More than 40% of patients experienced delirium. Delirium is an altered state of consciousness, and as ICU doctors, we work very hard to minimize this experience in our patients. In more than 22% of ICUs in America, there were high rates of invasive therapies at the time of death. Almost 13% of patients were receiving CPR at the time of their death, and more than 35% of patients died on a ventilator.

If getting CPR or being on a ventilator will only prolong suffering, or if either is not consistent with a patient’s wishes or values, then I — as their physician — must do everything I can to ensure this does not happen.

When I speak to families on the phone, trying to comfort them in the face of the death of their loved one, I promise this one thing: “I promise you that your loved one will not suffer. I promise you that I will make sure they are not in pain or in distress.” It doesn’t make the death of their loved one any easier, I know, but it is the absolute least I can do to make a horrible situation better.

None of us knows when or where we are going to die. Many (if not most) of us do not know what will cause our death. Those factors are beyond our control. If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome. That is a “good death.”

And if it is inevitable that a patient will die, and I can help that patient die a “good death,” then that is my job. And in that duty, there is some good, some light, in the overwhelming darkness of this pandemic.

Complete Article ↪HERE↩!

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I’m an oncologist with terminal cancer, and I support medical aid in dying.

Here’s why.

As my cancers progress, I want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death.

By Dr. Tom R. Fitch

Remarkable advances in medical care are helping us live longer. But that means there also are an increasing number of people living with advancing serious illness.

The vast majority understand they are living with a terminal condition, yet they and their families are unprepared for the final stages of life. Relatively few have had discussions with their physicians about their prognosis and end-of-life care options. Their wishes and goals are not discussed, and no meaningful informed consent regarding further disease-directed treatments is provided.

“Let’s try this,” becomes the default recommendation, and patients are commonly led down a path of relentless disease-directed therapies of limited to no benefit. Tragically, more treatment too often results in more suffering and shortened survival.

With the expert end-of-life care currently available, dying and death can be meaningful and peaceful for many. But to believe all deaths are “natural” – peaceful and without suffering – is just wrong.

I cared for patients with cancer for more than 30 years and increasingly provided palliative and hospice care over the final 17 years of my career. I saw agonizing deaths despite my best efforts, and it was not rare for patients to ask me how I might help accelerate their dying. That, however, was not an option in either Minnesota or Arizona where I practiced.

Patients must understand their options

Now, I too am faced with terminal illness. I have multiple myeloma and non-Hodgkin’s lymphoma, and despite aggressive care, I have not achieved remission. My cancers are incurable.

I contemplate dying and my death and those thoughts include consideration of medical aid in dying. I do not know if I would ever self-administer a lethal dose of medications, but I pray that the option is available for me.

I do know that we must help patients and families overcome the taboo of discussing their prognosis, dying and death. We need to facilitate meaningful end-of-life care conversations among patients, their families and health-care providers; promote the completion of advance directives; and encourage discussions of patients’ wishes, goals and values.

Patients and families must be informed of the many end-of-life care options available – including the expertise of palliative care and hospice providers, discussions regarding the possibility of stopping disease-directed therapies, withholding or withdrawing more advanced supportive care and/or devices, voluntarily stopping eating and drinking, and palliative sedation.

Patients near the end of their life also should have access to medical aid in dying (MAID).

What medical aid in dying laws do

I fully respect the conscience of those who oppose MAID; they are opposed for passionately held personal beliefs and values. I simply ask that they similarly respect my strongly held beliefs and values.

Guidance in the American Medical Association Code of Medical Ethics understands this divide: “it encompasses the irreducible moral tension at stake for physicians with respect to participating in assisted suicide. Supporters and opponents share a fundamental commitment to values of care, compassion, respect, and dignity; they diverge in drawing different moral conclusions from those underlying values in equally good faith.”

MAID is now legal in nine states and the District of Columbia, available to more than 70 million residents. After nearly 50 years of real-word experience, there has been no evidence of the “slippery slope” or “increased societal risk” opponents routinely cite.

We have seen no indication of a heightened risk for women, the elderly, poorly educated, the disabled, minorities, minor or those with mental illness. There has been no rising incidence of casual deaths and no evidence to suggest that MAID has harmed the integrity of medicine or end-of-life care.

MAID laws clearly provide adequate safeguards and allow for the position of dissenting physicians. The laws respect their conscience and give the right to any physician not to participate.

This is patient-centered care

Those of us who support MAID are asking for the same – respect for our conscience and considered judgment. We do not believe we are doing harm. We are caring for a competent adult who has a terminal illness with a prognosis of six months or less. We are providing patient-centered care consistent with the patient’s wishes, goals, beliefs and values – helping that patient avoid protracted, refractory and avoidable suffering.

One false narrative espoused by opponents – that “participation in MAID is suicide” – needs to be addressed. Participants do not want to die. They have a progressive terminal illness, and meaningful, prolonged survival is no longer an option.

They have full mental capacity with an understanding of their disease, its expected course and their prognosis. They have the support of their family. They feel their personhood is being destroyed by their illness, and they want their death to be meaningful and peaceful.

None of this is true for people who die by suicide.

Personally, I no longer struggle with the ethics, morality and other controversies surrounding MAID. Ethical principles and moral laws alone are just not sufficient to answer the complex questions surrounding an individual’s dying and death.

Our diverse country and our Constitution forbid us from imposing our own religious and faith beliefs on others. When we try, we are forcing others to conform to our beliefs and we are turning a blind eye from truly seeing the very real human suffering that is in front of us.

It is devastating for patients if we ignore their life stories, their family, their culture, and the impact of their disease and treatment on their life and well-being. The value of their life, as they define it, has vanished and they want to die on their own terms.

This is not a challenge to God’s divine sovereignty but a challenge to the disease itself. Patients are vowing that it will no longer be in charge.

As my cancers progress, I too want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death. I desperately want to avoid recruitment into that borderland where I would vegetate as neither here nor there.

I ask for your unconditional trust and I ask that those opposed to MAID for themselves, respect my prayerful discernment and personal requests for end-of-life care as I believe it is consistent with my needs, beliefs and values.

Complete Article ↪HERE↩!

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At New York hospital, a friar watches over those dying

‘The miracle is to let go’

Brother Robert Bathe, a Carmelite friar, outside of Bellevue Hospital in Manhattan.

By Kevin Armstrong
The morning after he turned 52 last month, Brother Robert Bathe emerged from the Millennium Hotel on West 44th Street. He ambled half a block into Times Square and reflected on the emptiness. A street cleaner’s whoosh broke the silence.

Dressed in a brown robe, the traditional garb of his Carmelite order, Bathe began his daily walk down Broadway. At 28th Street, he hooked left and continued to Bellevue Hospital, where he is a Roman Catholic chaplain and bereavement coordinator.

“Welcome to ground zero,” he said before a nurse trained a thermometer gun on his forehead and scanned for a reading.

It read 98.6. The nurse nodded.

“Normally,” he said, “the family is there with me bedside at death, and when we say the Our Father it is very emotional. Now I stare at a person that is taking their last breaths. I’m with a doctor and a couple of nurses. We’re saying goodbye.”

Bathe is the friar on the front line of the coronavirus pandemic. A native Tennessean who was a soil scientist before entering religious life at age 27, his Southern accent is the first voice many patients’ family members hear from the city’s oldest hospital when he calls to inquire about special needs.

Each morning, he reviews death logs. He then walks through the emergency department and intensive care unit, where he stands behind glass and cues up music on the smartphone he keeps in his pocket. “Bridge Over Troubled Water” is a favorite selection. On Funky Fridays, as he calls them, Bathe mixes Benedictine chants with James Brown. If patients are awake, he flexes his biceps or pumps a fist — encouragement to stay strong. He takes precautions when praying over the intubated, slipping on an N95 mask and face shield. In all, he ministers to more than 25 patients daily.

“Music gives a little more sense of sacredness so I don’t get distracted by nurses and doctors screaming,” he said. “I am focused on that patient, looking at that face. I know who that person is, imagine what it is like for them to be alive.”

Bathe speaks with a man across the street from Bellevue Hospital. He says he was called to become a friar more than two decades ago after witnessing a man die in North Carolina.
Bathe greets people in the Mount Carmel Place courtyard near the hospital. The coronavirus continues to paralyze New York and stretch the limits of its hospital system.

His pager pulses with death updates. It is programmed to receive alerts for cardiac emergencies, traumas and airway issues. Whenever a coronavirus patient on a ventilator needs attention, it comes across his screen twice. When a nurse who worked in the neonatal ICU died of covid-19 recently, Mary Ann Tsourounakis, Bellevue’s senior associate director of maternal child health, called pastoral care for help. A group of nurses grieved. First to arrive was Bathe, who led them in prayer in a small hallway.

“One of the most healing and loving I’ve heard,” Tsourounakis said. “People think it has to be a big production. Sometimes those moments are the moments.”

The virus continues to paralyze the city and stretch the limits of its hospital system. Confirmed cases have surpassed 185,000 and more than 20,316 deaths had been recorded, according to the New York City Health Department.

Bathe’s path to New York began in Knoxville, Tenn. He grew up around his grandfather’s cattle farm, went on frequent hikes as an Eagle Scout and eyed a career as a forest ranger while a teenager. His mother, Linda, worked at the University of Tennessee, and she consulted with faculty members about her son’s future in forestry. Prospects were slim, and alternate paths — archaeology or agriculture — were suggested.

He didn’t see himself traveling to Egypt to unearth tombs, so he dug into agricultural studies and toiled with botany and geology as well. Following graduation, he worked for the Buncombe County environmental health agency in North Carolina. Hired to protect groundwater, his release was to drop a line in honey holes for catfish, pitch a tent and listen to bluegrass songs after dark.

One day, Bathe was sent to meet a man named Robert Warren to evaluate his soil so he could build a house. When Bathe arrived, he saw Warren slumped over in his truck. As Bathe approached, he said, Warren grabbed his hand and asked, “Would you pray with me?”

They recited the Lord’s Prayer, he said. Moments later, he was dead, Bathe recalled. Bathe accompanied him to the hospital and attended the memorial service and funeral.

Bathe joined the Carmelites soon after, and in 1997 was assigned to Our Lady of the Scapular and St. Stephen’s Church, two blocks from Bellevue. Lessons followed.

One day, he said, a woman fell from her window in a neighboring building and through the church roof. Bathe was sent up to investigate.

“First dead body I ever smelled,” he says. “Life is tender.”

long his almost two-mile walk to work, Bathe’s appearance and demeanor have become well known and appreciated.

Transfers are part of the friar life. He taught in Boca Raton, Fla., and served as the vocation director from Maine to Miami before returning to Manhattan two and a half years ago.

In ordinary times, Bathe receives a monthly allowance of $250, lives in the St. Eliseus Priory in Harrison, N.J., and rides the PATH train. He fell ill in January, experienced the chills, registered a temperature of 101 and lost weight. He believed it was pneumonia then and self-isolated, using a back stairwell to his room. His brothers left meals outside his door, and he returned to Bellevue after convalescing. He has yet to be tested for covid-19.

Since March 30, the hospital has facilitated his participation in a program that provides free or discounted rooms for front-line workers, first at a Comfort Inn on the west side of Manhattan and now at the Millennium, to limit his commute. Along the route to work, his bald head, eager gait and hearty laugh are known to mendicants and administrators alike.

He carries on the tradition of the Carmelites, who have ministered at Bellevue since the 1800s, through periodic epidemics, saying Masses from the psychiatric ward to the prison unit. Colleagues include a new rabbi and a 20-year-old imam.

When a Catholic dies, he performs the commendation of the dead, a seven-minute service. His responsibilities range from distributing Communion to finding prayer books for patients across faiths to leading memorial services for staff. He is “staunchly against” virtual bereavement, which has become common amid the pandemic, insisting on providing a physical presence.

“People are looking for a miracle when the miracle is to let go,” he said. “Call me too practical, but I don’t pray they leap out of the grave like Lazarus. I think we’re meant for better. We’re meant for God.”

Hospital staffers are processing what has happened since the pandemic first gripped New York, and they’re bracing for a potential second wave. Since Lorna Breen, medical director for the emergency department at NewYork-Presbyterian Allen Hospital, died by suicide last month, Bellevue has increased its support services for employees. Questions about closure come from all mourners.

“Families ask, ‘Are we going to be able to have our loved one go to Mexico?’ ” Bathe said. “How are we going to do the next step, to bury our loved ones?”

long his almost two-mile walk to work, Bathe’s appearance and demeanor have become well known and appreciated.

On a recent Sunday, Bathe stepped outside for a breather in what some people call Bedpan Alley, the east side neighborhood that includes hospitals and a shelter on First Avenue. He checked on a homeless woman who sits in a chair facing Bellevue each day, rubbing his thumb against hers as she slept. A shoeless man was prone on the sidewalk. Bathe inquired about a can collector’s economic concerns. Business was slow.

“Are you a priest?” a woman on a bench asked Bathe.

“No, ma’am,” Bathe said. “I’m a friar.”

She introduced herself as Shonda. She was anxious about a meeting with her manager.

“You want to say a prayer for me?” she said.

“Put the phone down,” he said.

Bathe closed his eyes and prayed.

“Breathe,” he said.

“I’m going to breathe,” she said.

As he walked back to the hospital, his pager went off. “Cardiac Arrest,” it read, “10 West 36.”

“Somebody’s dying,” he said.

Bathe makes his way to the hospital from his hotel in midtown Manhattan.

Complete Article ↪HERE↩!

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Now more than ever we need to talk about how we want to die

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.

By Dr Anushka Aubeelack

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.

Complete Article ↪HERE↩!

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When life support is withdrawn, commitment to care must not end

By Timothy M. Smith

Physicians caring for the sickest patients with COVID-19 sometimes have to make the difficult decision to withdraw life-sustaining treatment. However, that painful choice does not obviate a physician’s obligation to provide supportive care to dying patients thereafter.

The AMA has created an ethics resource page, “Caring for patients at the end of life,” that offers expert advice on the ethical and emotional challenges involved. Citing numerous opinions from the AMA Code of Medical Ethics, the page provides a comprehensive guide to eliciting and following patients’ wishes for how they want to die.

More broadly, the AMA and the Centers for Disease Control and Prevention are closely monitoring the COVID-19 pandemic. Learn more at the AMA COVID-19 resource center. Also check out pandemic resources available from the AMA Code of Medical Ethics, JAMA Network™ and AMA Journal of Ethics®, and consult the AMA’s physician guide to COVID-19.

A transition, not an end

“A decision to withhold or withdraw life-sustaining treatment is not a decision to withhold or withdraw care entirely,” the page says. It goes on to quote the Code opinion on “Withholding or Withdrawing Life-Sustaining Treatment,” which requires that physicians reassure “the patient and/or surrogate that all other medically appropriate care will be provided, including aggressive palliative care, appropriate symptom management if that is what the patient wishes.”

Citing the same opinion, the page notes the emotional toll this process takes on everyone involved and recommends establishing the patient’s preferences and setting specific goals for care.

Ideally, patients will have already expressed their end-of-life wishes to their physicians or their surrogates. Often, though, patients haven’t given much thought to the care they will want or not want at the end of their lives. In those situations, per the Code, physicians should “elicit the patient’s values, goals for care, and treatment preferences” and capture those preferences in the patient’s medical record.

If the patient lacks decision-making capacity, the resource page notes, his surrogate may make health care decisions on his behalf.

Read the Code opinion on surrogate decision-making.

Understanding advance directives

If, however, the patient has an advance directive, the preferences set out in the directive should govern care decisions.

“Some physicians think advanced directives are only useful for declining care. They’re not. You can say what you want,” said Elliott Crigger, PhD, director of ethics policy at the AMA. “Now, you may not get it—there may be reasons why it won’t work—but you can say what you wish and how you want to die. And that includes either declining care or asking for care.”

There’s a similar misunderstanding around do-not-resuscitate orders, Crigger noted.

A few physicians may wrongly interpret a DNR order as a sign that the patient also is less interested in other supportive care. “But that’s not what it means,” Crigger said. “It means, ‘Don’t resuscitate me.’ It doesn’t mean, ‘Don’t provide every other kind of supportive care you can.’”

Read the Code opinions on advance care planning and the use of advance directives.

When sedation is appropriate

“When it proves impossible to adequately manage symptoms despite vigorous palliative care efforts, for some terminally ill patients an option of last resort is sedation to unconsciousness,” the page says.

Referring to opinion 5.6, “Sedation to Unconsciousness in End-of-Life Care,” the resource page notes that physicians should reserve this option for patients in the final stages of terminal illness and “ensure that options for appropriate, symptom-specific palliative care have been exhausted, ideally in consultation with a multi-specialty team,” adding that the patient or his surrogate must give informed consent before sedation is administered and the decision should be recorded in the patient’s medical record.

Read about a score-based framework for determining priority access to ventilators and other scarce resources.

Complete Article ↪HERE↩!

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Coronavirus Disrupts Hard Decisions About End-Of-Life Treatment

The coronavirus means more people are dying alone in ICUs. Families are having to make abrupt decisions at a distance about terminal care. Palliative care specialists try to adapt.

By Will Stone

TRANSCRIPT

Palliative care is a specialized branch of medicine that focuses on relieving pain and symptoms in seriously ill patients and those who are dying. Will Stone reports that the coronavirus pandemic has disrupted this kind of care at a time when families are facing abrupt decisions about end-of-life treatment.

WILL STONE, BYLINE: Before coronavirus, Darrell Owens rarely worked in the emergency room. Now he’s there daily. Owens is a nurse practitioner and directs the palliative care program at a hospital run by the University of Washington in Seattle. Owens used to visit with families in quiet conference rooms or at the bedside.

DARRELL OWENS: Cancer patients, stroke – regular routine palliative care patients.

STONE: Back then, he could grab a chair and scoot up right next to the patient and take his time. Palliative medicine focuses on patients’ quality of life and relieving symptoms of serious illness, like pain and anxiety.

OWENS: We are obligated – as much as we are to try to save people’s lives, we are as obligated to save their deaths.

STONE: Across the country, coronavirus has disrupted this sacred task. Owens is adapting. The ER now calls him a lot. He sees every coronavirus patient who’s older or at risk for complications.

OWENS: The conversations are more abbreviated than they would be because, one, you’re behind a mask. You’re in a loud room, completely gowned up, and so you want to limit your exposure.

STONE: All that makes it harder to talk through a patient’s chance of survival and big questions, like do you want to be resuscitated? Do you want to be put on a ventilator? Because of the pandemic, relatives are usually barred from the hospital.

OWENS: You cannot underestimate the stress on family members who cannot visit and now, in a crisis mode, trying to talk this through over the phone.

STONE: It’s this painful new reality that Rich and Rob Mar and their sister Angie Okumoto faced when they lost both of their parents to coronavirus last month. Their mother Elizabeth was in her early 70s, still running a Hawaiian restaurant with her daughter. Rich says she liked to give out hugs.

RICH MAR: One of those people that just quickly made friends and made an impression on everyone.

STONE: They say their mother was in good health before contracting the coronavirus. They brought her to the ER when her breathing got worse. She was asked, did she want to be resuscitated, if necessary, and put on life support? Angie says they didn’t hesitate to say yes.

ANGIE OKUMOTO: You know, yeah, of course. We just had no idea what this virus was going to do.

STONE: They just assumed she would pull through.

MAR: I didn’t know that was the last time I was ever going to talk with her.

STONE: Before they knew it, she was sent to the ICU.

OKUMOTO: For 14 days on the ventilator, she was alone.

MAR: Right. Right.

OKUMOTO: Alone for 14 days.

MAR: That’s the part that hurts the most and what will haunt me forever.

STONE: Near the end, they did get to see her, but she was sedated.

MAR: We were all gowned up. And so we’re, like, trying to talk to her and let her hear our voices.

STONE: Meanwhile, their father Robert was also getting sick. He was 78, an engineer.

MAR: My dad was more of the analytical type. He can give you a practical solution for everything.

STONE: They took him to the same hospital as his wife, where he made his wishes very clear.

OKUMOTO: My dad, from Day 1, he said he did not want to be on life support.

STONE: So Darrell Owens, the palliative care director, started managing Robert’s care.

MAR: He was super compassionate, telling us the facts and being straightforward with us.

STONE: Because Robert had decided against aggressive treatment, he was never moved to the ICU. He was able to have a few visits with his kids, and he wasn’t on a ventilator, so they could talk to him and text. Their father died on March 27, not long after their mother.

MAR: The way he wanted to.

OKUMOTO: With dignity.

MAR: With dignity, yeah. That was very important to him.

STONE: The family is grateful to the nurses and doctors. Still, they grieve those visits they never had. Angie never got to say goodbye before her mom was intubated.

OKUMOTO: If I got to be bedside to my mom earlier, holding her hand and just being present – and that we’ll never know, right? Like, that’s what sucks.

STONE: It’s an experience of death that more families are coming to know – loved ones dying alone and out of reach from a new and poorly understood virus. In New York City, Dr. Diane Meier works in palliative care at Mt. Sinai School of Medicine. During the worst of the surge, the hospital set up a palliative care hotline for families.

DIANE MEIER: So this is completely unprecedented. All the cues you normally get with face-to-face are very hard to pick up over the phone.

STONE: Mt. Sinai doctors are even calling elderly patients at home to learn their wishes just in case they do get infected.

MEIER: Many of our patients had been thinking about it a lot, incredibly relieved that we had reached out to them.

STONE: Meier says it’s a new way of doing palliative care when faced with a virus that moves so fast. For NPR News, I’m Will Stone in Seattle.

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COVID-19 Answers

A Two Part Interview with Dr. Diane Meier

Everyone is worrying about what to expect and how to prepare for COVID-19. After all, we know so little and there is still no treatment. In two interviews with Dr. Diane Meier, director of CAPC (the Center to Advance Palliative Care), ARCHANGELS Co-Founder and CEO, Alexandra Drane, gets at the core of what’s waking us up at night, including how do we make decisions and how do we actually feel human instead of just medical specimens. Diane makes us feel more in control and feel better about our COVID19 worries… she clears up confusion, addresses the fears many of us have, recommends three things we can all do right now to be prepared–and she makes it not scary. We can all feel good about telling a friend to watch these videos.

To learn more from about palliative care resources, go to www.getpalliativecare.org and https://getpalliativecare.org/whatis/disease-types/covid-19-and-palliative-care/

To learn more about ARCHANGELS, go to www.archangels.me and https://www.archangels.me/covid-19-resources