Category: Preparing for Death

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What Are Death Doulas?

by Monica Lozano

When people say someone had “a good death,” they usually mean that someone was comfortable and not in pain. But what if you could help their final days include the things they treasure — like their favorite song playing, who is at their bedside, even the scent of a candle in the room — so they feel at peace.

That’s why some people turn to end-of-life doulas. They are among the professionals who can help someone prepare for their death and reflect on their life: their greatest joys and regrets, any fears or worries on their mind, and how they want to be remembered.

It’s work that many people don’t want to think about.

“We live in a death-denying culture,” says Elizabeth Johnson, executive director of the Peaceful Presence Project, a nonprofit end-of-life doula collective in Bend, OR. Doulas can be part of the team that helps prepare people for death by opening up conversations about it, as well as providing comfort and resources. Hospice care teams and other palliative care practitioners also work in these areas.

Doulas and Hospice

Hospice care often involves a team of people, such as a social worker, a chaplain, and a nurse who checks a patient’s vitals, administers medication, and changes bandages. Doulas, on the other hand, have no required medical background and do not perform any clinical or medical tasks. They may read aloud to a patient, clear clutter, or sing with someone.

“Doulas are able to step into those unsupported spaces,” Johnson says. Where a hospice social worker or chaplain may visit once a week, “Doulas have more time and bandwidth. They are available for deep listening during acute windows of need,” says Johnson, who is on the board of the National End-of-Life Doula Alliance (NEDA).

Doulas can assist patients outside of hospice, too. Merilynne Rush, RN, a doula in Ann Arbor, MI, and vice chair of the End-of-life Doula Advisory Council of NHPCO (formerly the National Hospice and Palliative Care Organization), recalls a client who was overwhelmed after taking her husband home from the hospital to die. Rush talked to her about palliative care, a social worker, hospice, and getting a hospital bed. “She didn’t have the first clue about any of that. No one in the hospital tells you,” says Rush, who is also a past president of NEDA.

Likewise, Cynthia Schauffler of central Oregon contacted Peaceful Presence about a friend with terminal cancer. “My friend asked me when she should call hospice and I didn’t have the wherewithal, resources, and contacts to help her.”

Doulas from the group began visiting her friend twice a week. The visits included reiki, art therapy, and conversation with a chaplain. They got her hospice care and talked to her family about what to expect.

No Typical Cases

You may hear end-of-life doulas referred to as a soul midwife, end-of-life coach, death midwife, transition guide, or death doula. Unlike hospice, the cost of a doula is not covered by Medicare.

Private insurers do not reimburse for doulas, either. But some doulas provide volunteer services through a hospice or nonprofit organization.

Doulas may charge an hourly rate, from $45 to $100, or on a sliding scale. Or you may be quoted a flat fee from $500 to $5,000. Costs will vary depending on the number of visits, location, whether the doula is staying overnight, or other service requests.

Similar to a birth doula, an end-of-life doula tailors services to each client. Beyond getting wills and advance directives in order, they encourage the dying to reflect on their life. Are there relationships they want to repair? Something they need to say or do before they are gone? Who do they want to see again before they die?

There is no such thing as a typical case when you’re a doula. “It’s all over the board,” says Rush, a former hospice nurse and midwife, too. It’s not unlike the old tradition of a neighbor, friend, or auntie coming into help, she says.

Doula visits can be daily, weekly, or span several years. They can assist with writing letters, doing laundry, planning a funeral, or creating a legacy. A legacy project might involve captioning photos, scrapbooking, or organizing recipes to pass on to family.

One of Johnson’s patients had an extensive record collection. She helped him write meaningful stories about his life that coincided with each album. She hung up the stories in his room for visitors to read and discuss with him.

Someone to Talk to and Cry With

Sometimes, the family needs practical or emotional support more than the person who’s dying does — especially if that person isn’t conscious or alert.

Joanna Harmon of Finksburg, MD, described her doula as “a formidable advocate” who helped her weather the stress and emotional strain when her dad was dying in 2019. The doula was trained by Gilchrist, a hospice in Maryland that has offered volunteer doulas to their clients since 2010.

“She sat with my dad for as long as 3 hours and held his hand so I could leave the room.” The doula also helped get her mind off “the inevitable” by asking about her childhood with her dad. “She was someone to talk to, to cry to, to let those things off your chest,” Harmon says.

Schauffler says that her friend’s doula dropped everything to be there for her friend’s final hours and kept in touch with her husband afterward. “It made a huge difference,” she says.

Where to Find a Doula

To find an end-of-life doula, inquire at local hospices that may work with doula volunteers. Or start with the state-by-state directory of doulas from the National End-of-life Doula Alliance.

These end-of-life doula training programs can also link you to people who completed their course work:

  • International End of Life Doula Association
  • The International Doulagivers Institute
  • The University of Vermont Larner College of Medicine
  • Lifespan Doula Association

If You Choose a Doula

Ask prospective doulas about their training, experience, and fees, and also about their availability and backup, advises Rush, who also trains doulas as owner of The Dying Year. Plus, see if they offer the services you want. Massage therapy? Meditation? Meal prep?

You may opt to hire an end-of-life doula who has completed training courses and received certification. But there is no license or credential required to practice. “There is no universally recognized local, regional, or federal authority, regulatory or accrediting body that holds liability or provides monitoring for end-of-life-doulas,” states the website of National End-of-Life Doula Alliance. “There are a growing number of organizations offering certification but it is voluntary.”

Get references and also consider whether they have the experience but not formal credentials. “The person may have a lot of experience and no certification so don’t rule that out,” Rush says.

Complete Article ↪HERE↩!

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Loyal dog and veteran pass away within hours of each other

A dog’s loyalty to its owner is unshakeable. Even during the toughest times, they will remain by their human’s side.

By iHeartDogs.com

Gunner, an 11-year-old lab, was an extremely loyal pooch.

He has never left Daniel Hove’s side. Everywhere his human went, he was there. They turned out to be hunting buddies and best friends, too.

When Daniel received his pancreatic cancer diagnosis, Gunner was with him.

Even though he was a big dog, he’d go to Daniel and the two would cuddle up together. They’d spend an entire day like that.

“They were best buddies till the end. They were hunting buddies, they went everywhere together,” Daniel’s daughter, Heather Nicoletti, said in an interview Kare 11.

The Air Force veteran and his dog were literally inseparable.

Eventually, though, Gunner fell ill.

This was a bit expected, as the family noticed how incredibly in sync the two were.Daniel’s daughter, Heather, shared that she and her family more or less based their expectations of her dad’s daily health off of his dog.

“My dad was unresponsive, the dog was unresponsive. So once we saw how the dog was doing–he wasn’t moving much anymore, not doing well– we knew, it was coming.”

One day, Gunner grew listless.

His arms began to swell and he fell more ill. At that point, Heather knew that it was time to say goodbye to her dad’s dog.

She called the clinic she used to work at. When she got there, they put her dad’s long-beloved dog to sleep. He was right there beside him as he passed.

Within just an hour and a half, Daniel was gone too.

Knowing what happened to Gunner, the family couldn’t help but feel that the loving veteran would be gone soon as well. They did everything together, after all.

“Gunner could not be without my dad. I think he chose to go with him,” Heather continued.

However, they didn’t expect them to pass away within such a short time of each other. Losing both of them within the span of 90 minutes dealt a heavy blow to the ones that Gunner and Daniel left behind.

The family was devastated.

It’s always so sad to say goodbye to someone close to your heart. For Heather, she took comfort in the fact that her father never really had to say goodbye to his devoted, loving, and loyal dog.

In a sense, his passing couldn’t have gone any better. He wouldn’t be making the trip to the afterlife alone. His best friend was now with him even into eternity.

Now, Daniel and Gunner get to be together forever, pain-free.

In that sense, at least, the family was able to spare them from the pain of saying goodbye to each other.

“I had said I don’t know what’s going to be more traumatic for him. To try to take him away to end–to put him to sleep– to end his suffering, or if you let him live through dad dying. I think either way it’s going to kill him. We knew they were going to go together. We just didn’t know it was going to be hours apart,” -Heather shared.

Complete Article ↪HERE↩!

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Dignity therapy

— Making a patient’s last words count

Guided conversations with terminally ill people are popular with patients, families and doctors who’ve experienced them. But are they truly beneficial? Researchers are looking beneath the anecdotal appeal.

by Lola Butcher

In the mid-1990s, psychiatrist Harvey Max Chochinov and his colleagues were researching depression and anxiety in patients approaching the end of their lives when they became curious about this question: Why do some dying people wish for death and contemplate suicide while others, burdened with similar symptoms, experience serenity and a will to live right up to their last days?

Over the next decade, Chochinov’s team at the University of Manitoba in Canada developed a therapy designed to reduce depression, desire for death and suicidal thoughts at the end of life. Dignity therapy, as it is called, involves a guided conversation with a trained therapist to allow dying people to speak about the things that matter most to them.

“It is a conversation that we invite people into, to allow them to say the things they would want said before they are no longer in a position to be able to say it themselves,” Chochinov says.

Dignity therapy is little known to the general public but it has captivated end-of-life researchers around the world. Studies have yet to pin down exactly what benefits it confers, but research keeps confirming one thing: Patients, families and clinicians love it.

These end-of-life conversations are important, says Deborah Carr, a sociologist at Boston University who studies well-being in the last stages of life and explored the topic in the 2019Annual Review of Sociology.

A key need of people who know they are dying is tending to relationships with people who are important to them. This includes “being able to communicate their wishes to family and ensuring that their loved ones are able to say goodbye without regret,” she says.

And the closer we get to death, the more we need to understand what our lives have amounted to, says Kenneth J. Doka, senior vice president for grief programs for Hospice Foundation of America.

“As people reach the end of life, they want to look back and say, ‘My life counted. My life mattered. My life had value, had some importance,’ in whatever way they define it,” Doka says. “I think dignity therapy speaks to that need to find meaning in life and does it in a very structured and very successful way.”

A dignified ending

Chochinov’s search to understand why some people feel despair at the end of life while others do not led him to countries like Belgium, the Netherlands and Luxembourg, where euthanasia and assisted suicide have long been legal. There he learned that the most common reason people gave for seeking assisted suicide was loss of dignity.

To learn more, Chochinov and his colleagues asked 213 terminal cancer patients to rate their sense of dignity on a seven-point scale. Nearly half reported a loss of dignity to some degree, and 7.5 percent identified loss of dignity as a significant concern. Patients in this latter group were much more likely to report pain, desire for death, anxiety and depression than those who reported little or no loss of dignity.

Dignity at the end of life means different things to different people, but in interviews with 50 terminally ill patients, Chochinov and his colleagues found that one of the most common answers related to a dying person’s perception of how they were seen by others.

“Dignity is about being deserving of honour, respect or esteem,” Chochinov says. “Patients who felt a lost sense of dignity oftentimes perceived that others didn’t see them as somebody who had a continued sense of worth.”

Dignity therapy is tailored to enhance this sense of worth. In a session, a therapist — typically a clinician or social worker — carefully leads the patient through a series of nine questions (see graphic) that help a person express how their life has been worthwhile.

“It’s not like a recipe, that you can just read out these nine questions and then call it dignity therapy,” Chochinov says. “We train therapists so that we can help them guide people through a very organic kind of conversation.”

The session typically lasts around an hour. About half is spent gathering biographical highlights, and the other half focuses on what Chochinov calls the “more wisdom-laden” thoughts that the patient wants to share.

A few days later, the patient receives an edited draft for review. “There’s an ethos of immediacy — your words matter, you matter,” he says. “They can edit it and they can sign off on it to say, ‘That is what I want as part of my legacy.’”

But does it work?

Miguel Julião, a physician in Lisbon, Portugal, specialises in helping patients who have difficult symptoms, which is why he was asked one day a few years ago to see a patient suffering with unbearable pain.

“The minute I got into his room, he told me ‘I would like you to help me die soon,’” Julião says. “I told him, ‘I don’t agree with euthanasia and I don’t do it, but I would like to know about you as a person and what you are most proud of in your life.’”

In the next few minutes, Julião learned about the man’s pride in raising “two good human beings” and stories of their life as a family. And he received an invitation to return for more conversations, which continued until the man died a month later.

The encounter prompted Julião, who was pursuing his doctorate at the time, to pivot his research and focus squarely on dignity therapy. He has had lots of company. Chochinov estimates that nearly 100 peer-reviewed research papers, and at least four in-depth analyses — “systematic reviews” of the accumulated science — have been published so far, and more studies are ongoing. The largest study yet, of 560 patients treated at six sites across the country, is now being conducted by Diana Wilkie, a nursing professor at the University of Florida, and colleagues.

Wilkie also helped conduct the first systematic review, published in 2015, which came up with a conundrum. When all studies were viewed together, the evidence that dignity therapy reduced desire for death was lacking. “The findings have been mixed,” she says. “In the smaller studies, you see benefit sometimes and sometimes not; in the larger studies, not.”

The most definitive study— Chochinov’s original clinical trial, completed by 326 adults in Canada, the United States and Australia who were expected to live six months or less — found that the therapy did not mitigate “outright distress such as depression, desire for death or suicidality,” although it provided other benefits, including an improved quality of life and a change in how the patients’ family regarded and appreciated them. A few years later, however, Julião conducted a much smaller trial in Portugal in which dignity therapy did reduce demoralisation, desire for death, depression and anxiety.

Julião thinks that the different outcomes reflect differences in the patient groups: His study focused on people experiencing high levels of distress, while Chochinov’s did not. But Julião also notes that his study was small, with only 80 participants.

“We still need more evidence,” he says. “But, on the other hand, you see a high interest among clinicians, because they see it work in daily practice.”

Positive and negative results also may depend upon how studies measure “success.” Scott Irwin, a psychiatrist at Cedars-Sinai Cancer in Los Angeles, worked at a San Diego hospice that introduced dignity therapy in 2009.

“It was absolutely worthwhile — no question,” Irwin says. “Not only did the patients love it, but the nurses loved it and got to know their patients better. It was sort of a transformative experience for patients and the care team.”

Indeed, Wilkie’s literature review reported “overwhelming acceptability, rare for any medical intervention.” Patients seem to get something out of it, even if that “something” isn’t captured by measures like reduced desire for death. In one study of 100 terminally ill patients who received dignity therapy, 91 percent reported feeling satisfied or highly satisfied; in another, 93 percent gave high ratings of satisfaction.

In Portugal, family members of dying individuals have prompted Julião to develop new uses for the therapy. He and Chochinov first adapted the interview to be appropriate for adolescents. More recently, two individuals told Julião they regretted that their loved ones had died without receiving dignity therapy, prompting the researchers to create a posthumous therapy for surviving friends and family members.

In a study of this interview protocol for survivors, “we have wonderful, wonderful comments from people saying, ‘It’s like I’m here with him or with her,’” Julião says. Doing dignity therapy posthumously could be useful in helping families deal with bereavement, he says — an idea he’d like to test.

Barriers to use

But for all its appeal, few patients actually receive dignity therapy. Though the tool is well-known among clinicians and social workers who specialise in caring for seriously ill patients, it is not routinely available in the US, Doka says.

A primary barrier is time. The therapy session is designed to last just one hour, but in Irwin’s experience at the hospice, patients were often too tired or pain-ridden to get through the entire interview in one session. On average, a therapist met with a patient four times. And the interview then had to be edited by someone trained to create a concise narrative that is true to the patient’s perspective and sensitive in dealing with any comments that might be painful for loved ones to read.

Julião says he transcribes each patient’s interview himself and also edits it into the legacy document. The entire process typically takes about eight days; he suspects this is why he is one of only two people who provide dignity therapy in Portugal. He says he has enthusiastic responses from clinicians and social workers attending the lectures and workshops he has conducted since 2011. “But they don’t do it clinically because it’s hard for clinicians to dedicate so much time to this.”

Dignity therapy is most widely available in Winnipeg, its birthplace, where all clinicians at Cancer Care Manitoba, the organisation that provides cancer services in the province, have been trained in the protocol. If a patient expresses interest, or a clinician thinks a patient might be interested, a referral is made to one of the therapists, among them Chochinov.

“And then I see them, either in their hospital bed or more typically at their home,” he says.

A few months ago, he spent about an hour with a dying woman. She told him about her proudest accomplishments and shared some guidance for her loved ones.

A few days after he delivered a transcript of the conversation, the woman thanked him by email for their discussion and for the document that “will give my family something to treasure.”

“Dignity therapy is part of the bridge from here to there, from living my life fully to what remains at the end,” she wrote. “Thank you for helping me to tell this story.”

Complete Article ↪HERE↩!

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What “Shared Death Experiences” Are

& Why We Need To Discuss Them

By William Peters, MFT

As an end-of-life therapist and researcher, I have long known that American culture has an uneasy relationship with death. We have been taught to “fear” death and dying. Fitness regimens, diets, and cosmetic procedures tout themselves as being able to “turn back the clock.” Medicine is even more uncomfortable with life’s end: Beating death is often presented as the ultimate goal. Aggressive measures to prolong life are viewed as a testament to our love for another person.

This relentless effort to fend off death is confounding when one considers that opinion polls consistently find that the majority of Americans believe in a benevolent afterlife. It would appear that the public interest in the mysteries that surround life’s end is far more extensive than our institutions would suggest.

Why we don’t feel comfortable discussing shared death experiences.

Much of my work centers on the transition from life to death, specifically “shared death experiences” where the living report a connection with the deceased around the time of their death. I’ve overwhelmingly found that this connection involves a clear sense that their loved one has moved on to a better place. In more than 50% of the cases that I have studied, experiencers even report accompanying their friend or loved one part way on their journey out of earthly life.

Knowledge of this transition space is an open secret in palliative and hospice care. We know that many terminally ill patients also report being aware of or seeing deceased family members, friends, and even pets, in the room with them, coming to help usher them out of this world. Some shared death experiencers also see or sense these figures as well.

Yet, again and again, shared death experiencers tell me that they feel uneasy discussing this subject with their health care and spiritual care providers. Their concern is valid, as one study found that 80% of patients who had sensed the presence of a deceased and shared it with their therapist felt dissatisfied with their counselors’ responses. They either did not feel understood, or they felt dismissed.

It wasn’t always this way.

One of the earliest written works on end-of-life care is the medieval text Ars Moriendi or “Art of Dying,” which was utilized in Catholic monasteries in Europe. Not only does it contain information on prayers, music, and pain remedies, as well as guidance on managing mental and emotional distress among the dying, but it is surprisingly ecumenical, drawing guidance from Catholic, Celtic, Jewish, and even Islamic traditions. Its underlying message is that dying is a spiritual experience and that it is possible to die well and be comforted. However, in our own era, there has been a strong reluctance to discuss what makes a good death or to openly explore what happens to us when we die.

In our own era, there has been a strong reluctance to discuss what makes a good death.

Speaking of her own shared death experience, Stephanie, a woman in Washington, D.C., whose husband died of aggressive cancer, recalled traveling with him into an incredibly bright, white light. She said, “There was no pain, no hurt. It was peaceful,” adding, “It felt as if I were going back to something I already knew.” But her own clergy shut down any conversation, and “that deflated me terribly,” she said. Finally, an oncologist told her that he’d had a similar experience. He told her this, however, after closing the office door and stating he would never share his experience with anyone else.

I believe that these hushed discussions could be the very things we need to help both the dying and the bereaved. Listening to and examining stories of individuals who have had shared death experiences can offer us another framework in which to process and accept death.

Consider the story of Carl, a California man whose father died of heart failure in Massachusetts. He experienced an overpowering sensation of being next to his father, saying “I could feel it in my bones and my cells that my dad was there with me.” While the experience did not end his grief, it changed his perspective. “I miss my dad,” he told me, adding, “and I wish I could call him up and be with him and spend time with him. I grieved and was sad, but it doesn’t feel like a tragedy. It feels like he is in the place he needs to be.”

Indeed, of the nearly 1,000 cases I have studied, 87% of the people interviewed report that their experience has convinced them that there is a benevolent afterlife. Nearly 70% said their shared death experience has positively affected their grief, and more than 50% said that it has removed their own fears around death and dying.

The takeaway.

In the last two years, the pandemic has resulted in a wave of death among people we know and love. Perhaps now, together, we can start a new conversation—one that is willing to include the voices of shared death experiencers. With their heartwarming stories, we may be able to transform our relationship with death from one of resistance and fear to that of acceptance, ease, and wonder of this great mystery that we will all one day embark on.

Complete Article ↪HERE↩!

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Every Adult Should Have an Advance Directive

Despite Recent Well-intended but Misguided Advice to the Contrary

The Sirens and Ulysses by William Etty, 1837

By Richard B. Stuart DSW, ABPP, Stephen J. Thielke MD, George Birchfield MD

Living wills are often the precursors to ADs. More advanced living wills, like the 6-Steps Living Will, help patients clarify their values and formulate personal statements that provide context for treatment decisions. Such instruments express patients’ preference for quantity versus quality of life, the scope of treatment the desire, i.e. aggressive, limited, or comfort care. and which treatments they want to undergo if their quality of life falls below a specified standard. They also include the appointment of an agent who fully understands the patients’ wishes and can serve as an advocate if necessary. These requests are then translated into medical orders that are scanned into electronic medical records. This is very different than being tied to a mast.

Despite the promise of ADs, reliance upon dichotomous “always/never” choices is one major conceptual problem limit in the most commonly used forms such as the POLST. The problem is that life often does not fit into black or white choices. Imagine the following situations.

55 year old Harold has a POLST that stipulates no CPR because he wants to avoid the rigors of a prolonged painful death. But while gardening, he is stung by eight wasps and suffers anaphylactic shock from which he will die unless resuscitated. Should he be allowed to die by following the order? Or should his wishes be over-ridden by an emergency responder who does not know him but believes that CPR could reverse his condition with good effect? The first option creates a moral problem, the second an ethical problem.

75 year-old Edith has a POLST that stipulates that she does wants to undergo CPR. She has just been released from the hospital following a trial of a fourth intravenous cancer drug being administered for an incurable cancer. Due to a medication error, her breathing stopped long enough to result in a high probability of irreversible brain damage. Her surrogate is aware of her desire to undergo CPR if she could return to her prior level of functioning, but not if she would be permanently immobilized and attached to a ventilator. Should caregivers condemn her to a fate she dreaded because of a medical error in accord with her POLST, or should they decide to ignore the order and allow her to die? This time the ethical and moral risks are reversed.

These cases are medically straightforward but ethical and moral issues arise because the orders are incomplete: they do not provide enough information to allow others to make appropriate choices for the patient who is silenced by a crisis.

In both life and medicine, many decisions are more wisely construed as “Always, Sometimes, or Never” choices. Although the POLST denies this realistic option, other tools allow it. The attached Conditional Medical Order (COM) was developed to account for the middle ground. Both Harold and Edith could have stipulated that they wanted CPR on the condition that it would overcome a reversible condition and restore them to their prior quality of life. They could also have stipulated that they wanted to be resuscitated regardless of the circumstances, or that they want to be allowed to die if their heart stops beating for any reason. The POLST leaves the decision in the hands of others who may not know patient’s references in these unforeseen circumstances: the COM allows patients to retain effective control over the care they receive and allows providers to make ethically and morally responsible decisions consistent with patients’ desires.

Nothing in healthcare is perfect. By selecting the “sometime” option, patients do delegate to providers the authority to use clinical judgment to decide whether resuscitation is in the patient’s best interest. But if guided by an awareness of patients’ values, and ideally in collaboration with surrogates, providers can make medically informed decisions about the likely impact of prolonging the patient’s life that accord with what the patient would have chosen.

The standard COM stipulates patients’ preferred scope of treatment, and includes orders for resuscitation, oxygenation, and artificial nutrition and hydration. It can be expanded to include other procedures such as surgery, dialysis, use of antibiotics, hospital transfer, and/or medical aid in dying if legal standards are met. Because it is a medical order, patients must have sufficient capacity to understand it, and it must be signed by a physician, nurse, or certified physician’s assistant. All patients can request a COM which is far the strongest option currently available to allow them to maintain control over one of the most important decisions they will ever make.

An editable COM can be downloaded without charge from: Stuart RB, Birchfield G, Little TE, Wetstone , S, McDermott J. Use of conditional medical orders to minimize moral, ethical, and legal risk in critical care. Journal of Healthcare Risk Management. 2021;(1):1-12. DOI:10.1002/jhrm.21487

See, too: www.6stepslivingwill.org

Stuart RB, Thielke SJ. Standardizing protection of patients’ rights: from POLST to MOELI (Medical Orders for End-of-Life Intervention. Journal of the American Medical Directors Association. 2017 Sep 1;18(9):741-745. doi: 10.1016/j.jamda.2017.04.022. Epub 2017 Jun 13.PMID:28623154

Here is a sample of the way one patient personalized the COM in the words underlined —

Conditional Medical Order

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Who Are We Caring for in the I.C.U.?

By Daniela J. Lamas

We gathered as a medical team in front of my patient’s room early one Saturday. She was one of the sickest patients in the intensive care unit. Her lungs were destroyed by cancer and a rare reaction to her chemotherapy, and her condition worsened each day, despite aggressive interventions. It was clear that there was nothing more that we could do. Except to keep her alive until Monday.

Struggling to come to terms with this reality, her family had begged us to continue our interventions through the weekend. So we would keep her intubated, deeply sedated and, we hoped, pain-free, performing the rituals of intensive care until the family was ready to say goodbye.

There is a largely unacknowledged moment in critical care when doctors and nurses shift from caring for the patients in front of us to caring for their loved ones. Often these two aims are not inconsistent: Even when family members like these are not ready to stop life-prolonging interventions or ask for a treatment that is unlikely to work, they are speaking on behalf of the patient. But increasingly I wonder if it is possible to go too far to accommodate family. When a patient is at the end of life, what is our responsibility to those who will be left behind?

On another recent shift, I received a call from a colleague at a different hospital. He was caring for a patient in his 60s with severe respiratory failure after a coronavirus infection. The patient’s family was desperate for him to be transferred to our hospital, a larger institution with greater resources. But intensive care unit beds were a scarce resource, and there was no clear medical reason for the transfer. His team had already done everything that we would do, and the simple act of transferring someone so sick could be catastrophic. I was the critical care doctor on call, charged with accepting transfer requests, and it would have been easy to say no. But then there was the matter of his family.

The patient arrived overnight, just as sick as we expected. His oxygen levels had dipped in the move and never recovered. Standing outside his room the next morning, his wife asked me if I thought the transfer had been a mistake.

Maybe it was. Not because his numbers were worse; that was inevitable, regardless of the transfer. But because I had made the choice to bring someone to our hospital in large part so that his family members would believe they had done absolutely everything. Of course, family request alone is not a sufficient reason for a hospital transfer. And though I suspected that we would have nothing more to offer in terms of medical interventions, that was not possible to know with absolute certainty when the other hospital called. But perhaps even more important, I did not want his family to wonder what might have been.

And so the transfer was an act of caring for him, too, to leave his family without regret. I do not believe that we went against his wishes, sacrificed his dignity or caused him pain. When he died a few days later, it was peaceful, with his family at the bedside.

But that’s not always the case. Not infrequently a family will demand that doctors perform chest compressions and shocks if someone’s heart stops, even though we are nearly certain it won’t help. I used to find myself infuriated by these conversations. On occasion I have used hospital policy to take the decision away from the family altogether. But maybe that is not the only response.

Some years ago, Dr. Robert Truog, a critical care doctor and ethicist at Harvard, published a provocative essay arguing that there may be a role for cardiopulmonary resuscitation if it is necessary for the family, even if it will not directly benefit the patient. He told the story of a chronically ill child with a dismal prognosis whose parents were unwilling to stop aggressive measures. During one hospital admission, the child’s heart stopped, and at the parents’ behest, the team moved forward with attempts at cardiopulmonary resuscitation. When the efforts ended and the child had died, the parents entered the room, surveyed the detritus of the cardiac arrest, the lines and the tubes, and surprised the medical team members by thanking them for doing everything. Dr. Truog wrote that even if it was futile from a medical perspective, what he had come to realize was that the procedure let the family members know that the doctors had tried. That was the way to give them a narrative they could live with.

I am still not sure what to make of this argument. We would not resuscitate patients against their stated wishes, regardless of what their loved ones want. But in these moments, we are so often making decisions for both the patients in front of us and the people who will carry their story forward. And so maybe resuscitation attempts can be for a family just as much as or even more than they are for a patient. Maybe in some cases, that is justification enough.

But at the same time, I worry that even if my patients are beyond pain, there is also a cost to those who are forced to perform emergency efforts that are just that: a performance. I wonder, too, whether this very scenario means that doctors have failed. Perhaps if we were clearer communicators, no family members would choose for their loved ones to undergo intensive treatments that only postpone the inevitable.

That Saturday in the I.C.U. passed quietly for my cancer patient. But when I returned on Sunday, I learned that her blood pressure and oxygen levels had started to teeter when the nurses turned her, as they did every few hours to prevent bedsores. The daily activities of critical care were beginning to cause harm. We had planned to wait until Monday to readdress goals with the family, but was that the right choice? I hoped my patient was pain-free but could not guarantee it. And perhaps it was unkind to allow her family to spend another day hoping she might improve when we knew that to be impossible.

We called in her adult children and told them that their mother was dying. They cried and questioned, and I asked myself whether I should have waited, but they ultimately understood. If there was no way that doctors and nurses could make their mother better, then they would focus on her comfort. They gathered by the bedside. We waited for a chaplain. And late that night, in the last of our many rituals, a nurse disconnected my patient from the ventilator, ensuring she had enough medications so that she would not struggle. It was a final act of compassion, at once for the patient, her family and for us, too.

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End-of-life policies vary in United States prisons

There is significant variability in state- and nationwide policies on end-of-life decision making in United States prisons, a review finds.

“…the Federal Bureau of Prisons policy states that DNRs should not be followed if the individual is part of a prison’s general population,” says Victoria Helmly.

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The findings show significant variability regarding which incarcerated patients can complete advance care planning documents, how they are granted access to document their end-of-life wishes, and who can serve as their surrogate decision-makers.

There is an urgent need for geriatric and end-of-life care in US prisons. The prison population is aging rapidly, and older adults make up the fastest-growing age demographic among incarcerated individuals. The majority of deaths in prison are due to illness, and older adults account for the largest percentage of prison deaths.

“During the 1980s and 1990s, ‘tough on crime‘ laws produced an increase in very long prison sentences, and as a result we are seeing more people remain in prison into older adulthood,” says Victoria Helmly, a doctoral student in the Georgia State University criminal justice and criminology department. “In addition, more people are entering prison at an older age.”

End-of-life in prison

According to standards set by the National Commission on Correctional Health Care, incarcerated individuals have the right to make end-of-life care decisions. These advance directives commonly include health care power of attorney (in which another individual is empowered to make decisions about their medical care) and “do not resuscitate” (DNR) orders or other directives regarding medical interventions or advanced life support. However, as the study notes, there are multiple barriers to implementing advance care planning in prisons, such as finding a person to serve as a health care power of attorney.

The researchers pulled 36 state-level policies as well as policies from the Federal Bureau of Prisons. They found that 22% of policies state that advance directive documents are offered when a person first enters the prison facility, regardless of age or health status. (Others indicate that end-of-life documents are discussed during medical exams.) More than a third (38%) of policies make no mention of where advance directives are located or when incarcerated individuals should be given the opportunity to complete them.

According to the study, most policies do not state who is eligible to complete advance directives. However, the researchers found notable exceptions. For example, three states (Hawaii, Maine, and Massachusetts) only allow those with terminal illness to complete an advance directive.

Health care proxies

The policies also differed in their approach to who is empowered to act as a health care proxy (i.e. make health care decisions on behalf of patients). Of the policies, 80% do not allow other incarcerated persons to serve as health care proxies, and 60% bar prison staff from serving as proxies. Notably, Georgia is the only state whose policy explicitly allows other incarcerated people to serve as proxies. Many policies also prohibit other incarcerated people (45%) or correctional staff or health care providers (41%) from serving as witnesses to advance directive documentation.

The researchers note that these restrictions warrant further exploration, as they can make it difficult for incarcerated persons to have their end-of-life wishes honored.

“If neither other incarcerated individuals nor prison staff can serve as health care proxies, this may leave an incarcerated person without many other options,” says Helmly, lead author of the study in the International Journal of Prisoner Health.

Nearly all (95%) policies state that advance care planning documents are kept in the person’s medical record, and nearly half (49%) indicate that the documents will be transferred with the individual to a hospital or different correctional facility.

But what about compliance?

The researchers also found very little discussion of compliance. Just one state policy (Idaho) mentions a review of compliance. No policies defined quality metrics or compliance goals. In fact, some policies specifically stated that portions of advance directives do not have to be implemented.

“I was surprised to learn that some policies state that correctional staff can decline to follow DNR orders if they feel doing so would constitute a ‘security’ threat,” says Helmly. “In addition, the Federal Bureau of Prisons policy states that DNRs should not be followed if the individual is part of a prison’s general population.”

In sum, the findings suggest an important opportunity to develop national guidelines for prisons to standardize their policies in accordance with community standards.

“This would help to ensure that incarcerated people across jurisdictions have the same opportunity to document their end-of-life wishes and increase trust that those wishes will be honored,” says Helmly.

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