Category: Death Education

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How to Cope With Death as a Future Doctor

Premed students should prepare themselves to compassionately handle the inevitability of patient deaths.

To ensure they can function best for the next patient, doctors must find ways to cry, grieve and keep moving.

By Kathleen Franco, M.D.

Most prospective medical school students set out to become physicians because they want to heal the sick, often forgetting that patients, young and old, sometimes die. Death is a very real – and natural – part of medicine that you will not only face, but also need to learn how to handle.

Before you start med school, consider how you might care compassionately for a dying patient and how you will cope with losing patients. Although some specialties may be more insulated from death than others, all will be touched by death beginning in med school.

This year, because of the coronavirus pandemic, many premeds will have experiences with family or friends’ families where they will not able to be with the loved one at the time of death. This is hard on everyone involved. Time to grieve together is important to us as human beings.

Some physicians – although very few in my experience – look at death as defeat and cope by emotionally running away from dying patients. For example, in the inpatient setting, they may visit the patient less often or avoid contact altogether.

Currently, patients who die quickly in the intensive care unit have nurses helping them make a final call to their family if they are awake and aware. It has been tremendously difficult for those doctors and nurses in the hospital to go through this process over and over again with their patients so frequently.

Our daughter in Southern California recently was devastated after losing four of her patients to COVID-19 in the same day. I never experienced that in my long career and wonder how I would have handled that and who I would have called on for support. To keep functioning for the next patient, one must find ways to cry, grieve, share and keep moving.

In the outpatient setting, a physician uncomfortable talking about death might recommend a longer time between visits or, rather than suggest a follow-up appointment, wait for the patient to request one. This coping strategy makes patients feel abandoned.

Most doctors are sensitive and some go to the patient’s residence or nursing home to say their final good-bye. I recently read a humanitarian essay by a physician who did just that. You could discern it had been helpful to both the doctor and the patient to have some final moments together.

Other physicians – again, very few in my experience – cope by behaving callously or indifferently. Subconsciously, they may be trying to avoid emotional involvement, but their behavior leaves their patients and the patients’ families feeling hurt and disappointed.

Most physicians find healthy strategies to support their dying patients. These same strategies help physicians keep themselves emotionally healthy, too. However, this year it has required much more. Sharing the emotional pain with a significant other, parent, another physician or a therapist while omitting confidential patient information can be critical.

If you have had the opportunity to talk with front-line caregivers recently, you will quickly sense the difference in how they are coping. For some, the burden of anxiety, depression or burnout is seeping into their normal level of resilience. After almost a year of a deadly pandemic, it is no wonder.

Several med school applicants who had volunteered in these settings continued with patients after COVID-19 hit by phone calls, letters, FaceTime or even Zoom. I was impressed that their caring was authentic and they considered how important it was for the patient that someone continued to reach out when he or she could have simply stopped communicating and used the pandemic as an excuse. This was an important experience for both the patient and the student applicant, not just some ploy to attract the interest of an admissions screener.

As a future med student, it’s vital that you prepare yourself to compassionately face death and dying and the complex emotions that follow. One way to do this is by volunteering after the coronavirus pandemic ends in a hospice facility or nursing home and honing the following seven skills. You can then call on this experience in the future as a physician.

Be Authentic

As a volunteer after COVID, introduce yourself and express your hope that someday you wish to become a physician. Let patients know you are there to learn more about their experiences. Your wish to get acquainted can be a useful conversation starter. Inquire about their experiences when they were growing up or what they were thinking about when they were your age. Ask about their work or career – a generally safe place emotionally – and where they have lived or about their family.

Be sure to make eye contact if you are in person or on FaceTime, and watch your body language. You’ll use these skills when you’re a physician to engender trust and open communication with your patients.

Listen With Purpose

Practice your active listening skills so that during future visits you can ask patients more about what they told you previously. By bringing up something from a past visit, you will show that you remembered what they told you and that they matter to you as a person. Active listening is another skill you will use throughout your medical career and can start cultivating right now, even during the pandemic.

Allow Patients to Talk About Death

Everyone faces death differently. Some people want to talk about it while others prefer to reflect on their life and accomplishments. Whether now as a volunteer or later as a physician in training, let patients talk about death as they need to. Don’t shut down the conversation by saying, “Everything will be all right.” Instead, ask them to tell you more. Listen to all they have to say, whether it’s about their health, fears or fond memories.

This can be very hard, maybe even harder with someone in your own family. You will want them to keep fighting and may be tempted to cut into the conversation to encourage them to keep fighting. Sadly, I learned this the hard way with my own mother. We eventually got around to the hard discussions, but we could have had many richer conversations if I had just listened.

Visit or Connect By Phone or FaceTime Consistently

A good physician builds rapport over time, and you can develop this skill through your volunteer position. Visit patients if you are able. If there are long gaps between your visits, drop the patient a note or call to check in.

This is a good habit to develop so that when you are a physician, your patients – particularly those who are dying – will feel supported. At the end of each visit, thank the patients. You won’t know at the time if it will be your last opportunity to visit with them, so treasure each interaction.

Do Your Homework

Myriad scholarly articles and books are available to help physicians, and all people, accept that death is an inevitable part of life and that grieving is not only normal but encouraged.

Decades ago, Dr. Elisabeth Kubler-Ross wrote about the five stages of grief. We now understand that people don’t necessarily experience the five stages in order; rather, the stages often fluctuate. Most people can describe their shock, anger, depression, negotiation, disbelief and acceptance following a loved one’s death. Some get stuck between anger and depression.

After the initial feeling of loss has abated, most people begin remembering the fun times and reflecting on fond memories. The ones who have inspired me still see the good in life and want to share love, even at the end. Don’t be afraid to cry. If tears begin to flow, patients do not see that as weakness but rather that you sincerely care about them and what they are going through in this process.

Connect With the Social Work Team

Social workers deal with death and dying regularly and can give you advice about how they cope and prevent burnout. For instance, attending the funeral helps some people. Others seek solace from support groups or counseling.

If you’re at a hospital, make the social work team part of your professional network. Their support and advice will help you cope as a physician, especially when you lose a patient who had a particular influence on you.

Allow Yourself to Grieve

Over the course of your relationships with patients who are dying, you will learn a great deal about your capacity to care for another person. When patients die, it will hurt and you will gain some insight about your ability to cope. Physicians often cope by speaking confidentially with colleagues and expressing sadness and other emotions in a journal. After omitting a patient’s protected health information, some physicians publish their writings to help themselves and others who are grieving.

Many medical schools teach students to reflect on their emotions and write them down. Writing and seeing the words help the healing process. Remember that everyone grieves differently. Give yourself the room to process your emotions and to discover the coping mechanism that’s right for you. Writing a note of condolence to a deceased patient’s family via the funeral home or newspaper obituary can be helpful to you and the family.

As a future medical student, embrace the opportunity to get to know someone who is dying. Your experiences will allow you to reflect about how you will feel when one of your future patients dies and will create a meaningful bond between you and the people you touch – now and in the future.

Complete Article ↪HERE↩!

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Ethicist Says Talking About Death Isn’t Morbid

— But More Like The ‘Birds And The Bees’

Headstones in Calvary Cemetery in the Borough of Queens in New York

By Tonya Mosley and Allison Hagan

During a global pandemic, it may be surprising that more people aren’t talking about death and specifically, their final wishes.

Dr. Lydia Dugdale has been seeing this scenario play out over the past year with some of her patients in New York. Dugdale is a medical ethicist and explores the concept that part of living well is “dying well” in her book, “The Lost Art of Dying: Reviving Forgotten Wisdom.”

People spend their entire lives fighting back against death as part of the human condition. Some doctors may fear death, too, but physicians need to talk with patients about their end of life wishes especially during the pandemic, she says.

When patients come in for annual physicals, Dugdale asks if they want to talk about their end of life wishes — and most people say no.

“However, when we get talking, people realize that this is something important, that dying well is very much wrapped up in living well,” she says. “And in order to die well, we have to make some active decisions now while we’re healthy.”

Many people want someone to open the door to this conversation but don’t know how to start it themselves, she says.

The pandemic has raised concerns about ventilators and dying alone in the hospital. One of the biggest obstacles of this challenging time is providing dying people with community and family despite COVID-19 precautions, she says.

In her book, Dugdale shares some forgotten wisdom from the 14th century bubonic plague outbreak. Historians estimate that the “enormously devastating” outbreak killed as many as two-thirds of Western Europeans, she says.

In the 1300s, people approached the possibility of death in some eerily similar ways compared to today.

Some people decided to live large and indulge in hedonism without fretting over the looming possibility of disease and death. This group is comparable to travelers who faced criticism for going on spring break trips early on in the coronavirus pandemic, she says.

Others didn’t leave their house or engage with their community at all during the plague in hopes of earning “divine retribution,” she says. People didn’t know that bacteria caused the plague, but they understood venturing outside could result in getting sick. During the coronavirus pandemic, some people similarly haven’t left their houses at all or only a few times.

The final group of people tries to strike a balance between living life and recognizing the inevitability of death. These individuals continue to engage with society in a wise, prudent way to protect themselves and others, Dugdale says.

“Whether it is plague or pandemic or famine or war, we all are facing our mortality,” she says. “Death has been and always will be 100%.”

“The Lost Art of Dying: Reviving Forgotten Wisdom” by Lydia Dugdale.

Here & Now host Tonya Mosley’s grandmother always taught her that death is a part of life. Dugdale writes that conversations around death should mirror the birds and the bees chat, but she sees generational differences around talking about death in her patients and family members.

Dugdale’s grandfather returned from fighting in World War II and immediately secured cemetery plots. He made ongoing jokes for years about his relationship with the undertaker and threatened to write people out of his will depending on matters such as getting a tattoo he didn’t like, she says.

“But this idea that we need to, just as a matter of practical import, get ready for death is something that really feels like we’ve lost in the younger generations,” she says.

Everyone has a role to play in talking about living and dying well, she says. One common misconception around talking about death is that the conversation should occur close to the end of someone’s life.

People need to prepare to die well when they’re still healthy, she says. For some people that means fulfilling medical wishes such as do-not-resuscitate orders or planning to die at home. If someone wants to die at home surrounded by loved ones, Dugdale says to question if they’re investing in those relationships now.

Death also brings questions about the meaning of life and what happens afterward. Trying to seek answers on your deathbed is difficult, so Dugdale advocates for taking some cues from the Middle Ages.

“We should do this work now,” she says. “And so even engaging these questions of living and dying well — about what life means in the context of our communities over the course of a lifetime — is the best way to work toward a good death.”

Complete Article ↪HERE↩!

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End of life planning

— starting difficult conversations

What do we mean by end of life planning?

End of life planning involves thinking in advance about your preferences and making decisions about the final months of your life. It can include:

  • deciding how you’d like to be cared for
  • thinking about where you’d prefer to die
  • making it clear if there are any treatments you don’t want to receive
  • putting your affairs in order by making a will
  • planning for your funeral.

Once you’ve thought about your wishes, it can help to share them with your close family so they’re aware of your preferences. However these conversations can bring about a range of emotions and starting them in the first place can be a real challenge. Here are some suggestions to help you begin the conversation around end of life planning with your loved ones.

Decide what you want to say

Take a bit of time to think about your wishes and exactly what you want to tell your loved ones. You might want to talk about the type of care you’d like to receive and any treatments you’d prefer not to be given. If you feel comfortable, you may want to let them know your preferences about where you’d like to die. As well as your future care, you may also want to talk about your funeral wishes and what you’d like to happen to your possessions. Make some notes on what you’d like to talk about – think about the things that matter to you most.

Choose the right time to talk

Have the conversation when you know what you’d like to say and, most importantly, when it feels right for you. You may want to let your family member or friend know in advance that you’d like to talk about end of life planning so it doesn’t come as too much of a shock for them when you bring it up.

If you’re not ready to have a face-to-face conversation yet, that’s completely okay too. Perhaps you could try expressing how you feel and the things you’d like to talk about in a letter or recording something on your phone instead.

Find the right setting

Have a think about where you’d feel most comfortable having the conversation. You’ll probably want somewhere that’s quiet and private, and somewhere you won’t be interrupted. That might be at your home or maybe while you’re out for a walk. Choose a place where you’ll feel most relaxed and at ease.

Start the conversation

Starting the conversation can be really difficult. You might want to plan how you’re going to bring up the topic and have some phrases ready in your mind. You might want to open with a question, “Have you thought much about…?” or perhaps a statement, “I know it’s a hard conversation to have, but I’d like to talk about…”. Having these phrases ready can help you feel more comfortable getting the conversation started. Try not to worry about saying the wrong thing; there’s no right or wrong way to deal with difficult conversations; the most important thing is you’ve been brave enough to start it.

Take your time

Don’t feel like you have to cover everything in that one conversation. Spread it out into a few conversations over time. Talking about dying can be emotionally draining both for you and your loved ones, so break the conversations down into small chunks and take your time.

Prepare for different reactions

Everyone will respond to conversations about death differently. Some people will find it easier to talk about than others. Try to be respectful of people’s reactions, keep calm and show you understand. If the person you’re talking to is finding the conversation difficult, then you can always say, “Let’s stop talking about this for now and come back to it another time.”

Talk to your GP

It can be helpful to talk to your GP, or another health professional involved in your care, about end of life planning. They can make you more aware of the options available to you. Let your GP know in advance that this is what you’d like to discuss. You could book a double appointment so the conversation doesn’t feel rushed.

There isn’t a right or wrong way to have a conversation about your end of life care. It’s difficult to talk about dying. It’s not something any of us necessarily want to be reminded about. But it’s important to make your wishes known to those closest to you so they’re aware of your plans and you have some peace of mind.

Complete Article ↪HERE↩!

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Green Burial Wants to Clean Up American Funerals

Natural burials can remind us that death and grief are natural, too.

The Preserve at All Saints in Waterford, Michigan.

By Jake Maynard

Basil Eldadah assumed his father’s funeral would be simple. Years before, Basil’s father had taken steps to make the process easy on the family, purchasing plots and making arrangements. But in 2012, when his father died, Eldadah and his family discovered how complicated and impersonal the American funeral industry could be.

First, Eldadah learned that what his father had purchased was only the plot itself. Digging the grave, installing the concrete grave liner, and filling in the gravesite were not included. But the larger issue was that the cemetery required the use of a vault or burial liner: a concrete box that encases the coffin, keeping dirt from collapsing the casket. Eldadah’s family is Muslim, and it’s customary in Muslim traditions for a body to be placed directly in the soil. He described Muslim burial as “a process that reminds us of the humility of being from dust and returning to dust.” But most American cemeteries require concrete vaults or grave liners to prevent dirt settling at the gravesite—it makes the cemeteries easier to mow and eliminates the spooky depressions overtop graves—despite the fact that it is counter to the religious traditions of Muslims and some Jewish denominations. For Eldadah’s father, the best the family could do was to add some dirt to the inside of the vault.

>Later, as the grief began to lift, Eldadah questioned whether there was a more reverent, natural approach to burial. As an active member of his local Muslim community and as a researcher who studies aging, he knew that his experience wasn’t unique. “My father’s funeral really kind of planted the seed in my mind,” he told me. He eventually learned that there is a name for what he wanted: a green burial ground.

Green burial doesn’t have an official definition but generally refers to a range of cemetery practices that limit fossil fuel usage and the amount of human-made materials put into the ground. More broadly, the green burial movement wants to help people approach death with a more natural, and less commercial, outlook.

Green cemeteries substitute exotic hardwood caskets with renewable wood coffins or burial shrouds, and they don’t line graves with concrete. They shun mown lawns for native grasses and trees. Some green cemeteries mark graves with native stone or plant memorial trees; others don’t mark graves at all. They reject embalming as unnatural, unnecessary, and toxic. (Embalming chemicals contribute to high rates of cancer in mortuary workers.) Green cemeteries look more like nature preserves or parks than the orderly cemeteries we’re accustomed to.

The nonprofit Green Burial Council certifies cemeteries as green—it’s kind of like LEED building certification—and keeps tabs on the environmental impact of conventional burial. It says that each year American burials put more than 4 million gallons of embalming fluid, 20 million board feet of hardwood, 81,000 tons of metal, and 1.6 million tons of concrete into the ground. Cremation, promoted by the death care industry as the greener alternative, uses the equivalent of around 20 gallons of gasoline per cremation and vaporizes heavy metals (from dental fillings and surgical implants) into the atmosphere. While cremation conserves physical space, green burial conserves energy.

Burial wasn’t always so complicated. Embalming only gained traction among wealthy Americans during the Civil War, which essentially started the modern funeral industry. (Abraham Lincoln was embalmed for his funeral train, and reembalmed at many stops, but onlookers thought he looked nasty.) Concrete grave liners came later, allowing for today’s flat, uniform suburban cemeteries.

Generally speaking, laws governing burial are complicated and vague. In most states you can bury a loved one on your own property, but local zoning ordinances often contradict the state laws. While no states legally require embalming or grave liners, the funeral industry has made them so standard that in some places, they’re essentially requirements. Neither practice has any public health benefit, but embalming stretches the possible time between death and funeral. Embalming is popular only in the U.S. and Canada; in the rest of the world, it’s actually quite rare. Funeral homes have normalized embalming because it saves on refrigerator space and because they can sell larger funeral packages.

After his father’s funeral, Eldadah let his idea percolate until he found the right partner, one who’d also been surprised by the cost of a funeral. In 2019, Eldadah’s friend Haroon Mokhtarzada, a successful tech entrepreneur, received a call asking him to help fund the burial of a local community member. He was glad to help, but the cost rattled him.

“I was thinking it was going to be a couple hundred bucks and it was several thousand dollars,” he said. “And I came to learn that the average burial in Maryland is $10,500.” The national average, according to the National Funeral Directors Association, is about $9,000. (This chart shows how complicated itemized funeral expenses can be.) Mokhtarzada said, of the funeral’s cost, “There’s something that bothered me about that to my core.”

He asked, “Why does a hole in the ground cost $10,000?” The same use of embalming fluid, concrete, and hardwood that make death so polluting also make it expensive. According to the Bureau of Labor Statistics, funeral costs jumped 225 percent since 1986; GoFundMe hosted 125,000 memorial campaigns in 2020. Funeral poverty is an underreported crisis in America.

Eldadah had contacted Mokhtarzada previously about the project, but he was too busy to get involved. Seven years later, backed with his money and startup expertise, Mokhtarzada emailed Eldadah and said, “We’re going to make this thing happen.” Together, they set to work making metro D.C.’s first nonprofit green cemetery. If it works, it will be the most urban green cemetery in the U.S.

There are 82 cemeteries in America certified as green by the Green Burial Council (you can read about the certification standards here), but the movement has struggled to take hold near major cities due to the price of land. Pete McQuillin, who operates Penn Forest Natural Burial Ground near Pittsburgh, told me that it took him three years to find a property close to the city. In the nine years since Penn Forest opened, it has interred only 205 bodies. (Because people usually want to be buried next to their deceased loved ones, cemeteries are notoriously tough to get started.) But the number of burials is growing steadily every year, as does the execution of Penn Forest’s broader mission: It strives to be a multiuse park, hosting guided nature hikes, community roundtables on death, and a DIY coffin-making class.

Mokhtarzada and Eldadah have similar goals for their site, a woody, 40-acre plot in Silver Spring, Maryland, tucked between a concrete factory and a church. (The price? Almost $2 million.) When I first talked to them in July, they were excited to explain the project’s overarching goals. “We’ve started to envision a community-gathering place,” Mokhtarzada said. “Not just a creepy place where you only go to pay your respects and then you leave. But some place where people would want to spend quality time … a space where not only do the living serve the dead by providing simple, natural, and dignified burials, but also where the dead can fuel life.”

By December, they were feeling the weight of bureaucracy. In between fielding questions from their new neighbors about water quality and funeral traffic, the two men had poured $200,000 into the project before breaking ground. There were nonprofit lawyers, land-use lawyers, engineers, architects, permitting fees. And they were still struggling to come up with a name. Like burial, starting a cemetery was more complicated than anticipated.

While Mokhtarzada’s startup experience was helpful, he learned that the cemetery business is unique. “In a startup mode,” he said, “you just figure out as much as you need to figure out, you don’t figure out what this thing’s going to be in five and 10 years. But what I’ve found that was different in this creative process is we had to think decades into the future. We had to think in three dimensions in decades.”

To help with that part, Eldadah and Mokhtarzada hired architect Jack Goodnoe, who has designed some of America’s best-known green burial grounds. Goodnoe started designing conventional cemeteries in the 1980s and began working with green cemetery movement when the movement began in the late ’90s. While Goodnoe supports greening the death industry, he also thinks that green and conventional cemeteries need to learn from each other. The green burial movement has been led by charismatic industry outsiders—academics, environmentalists, spiritual types—with big ideas offset by a lack of knowledge about cemetery management. Goodnoe recommends that “when someone wants to start a green cemetery, they partner with a traditional cemetery that can bring all the legal, grief, record-keeping elements that they’ve learned from decades in the industry.”

Eldadah and Mokhtarzada don’t plan to work with a traditional cemetery, but they have implemented some conventional cemetery practices at Goodnoe’s recommendation. For example, some green cemeteries let people choose their own burial site anywhere on the property, which Goodnoe worries could lead to record-keeping issues for future cemetery managers. At their site, Eldadah and Mokhtarzada have taken Goodnoe’s advice of burying in one area at a time and evenly spacing gravesites like a conventional cemetery might.

They hope to open for burials in 2021 and have already generated some interest among the local Muslim community. But in order to fulfill their inclusive mission, Eldadah and Mokhtarzada will have to expand beyond green burial’s usual demographic. Hannah Rumble, an anthropologist who studies burial in the U.K., told me that green burial has been “quite a middle-class aesthetic and cultural practice,” and hasn’t yet become popular among the working-class people who could most benefit from lower burial prices (often less than half the price of conventional burial) and less upkeep responsibility. But traditions change slowly, she says, and as the last rite of passage, burial traditions are usually some of the last to change.

On a more spiritual level, Rumble has observed the way that green burial has influenced the grieving process of people she’s interviewed. She says, “The bereaved like to go over time to watch the trees grow, to watch the site developed to maturity, to watch the plants bed in. It’s interesting how their own emotional journey with grief has changed and how they see it reflected in the development of the natural burial ground. … And so now their visits are more about just going and enjoying the bird songs, seeing how the site’s developed, seeing what initiatives are going on. It becomes a kind of community, a community of practice.”

This sentiment is ultimately how the green burial movement overlaps their ecological and spiritual goals. Conventional cemeteries, with their permanent headstones and concrete grave liners, encourage us to think that even in death, we’ll last forever. What natural burial offers is the reminder that death and grief are like all natural processes: They change and evolve, grow and decay. Like Rumble says, “I think what’s really powerful about that ecological metaphor is it’s fairly timeless. And it’s one that, irrespective of your faith, people can relate to.”

Complete Article ↪HERE↩!

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Dying at Home May Improve Patient Satisfaction Surrounding End-of-Life Care

By Laura Hensley

  • Dying in the home can lead to greater satisfaction of end-of-life care, according to research.
  • Patients’ preferences around death should be respected when discussing palliative care options.
  • Dying in the home can not only benefit patients and their families, but can also reduce healthcare costs.

Older adults who die in their home are more satisfied with their end-of-life care than those who die in hospital settings, a new study has found.1

Researchers out of Johns Hopkins University analyzed data from the National Health and Aging Trends Study (NHATS) of Medicare beneficiaries with and without cognitive impairment who died at 65 or older to see if place of death affected their satisfaction of end-of-life care. The team found that the most common place of death for seniors with cognitive impairment was in the home. People without cognitive impairment were equally as likely to die at home or in the hospital.

Based on the seniors’ “last month of life” interviews, researchers found that participants were more satisfied with the end-of-life care they received when they died at home.

“Many people ‘bond’ with their home, which is known as place attachment,” Natalie G. Regier, PhD, an assistant professor at Johns Hopkins University School of Nursing and the study’s lead author, tells Verywell.

“Human beings, even ones who live alone, can actually experience a reciprocal emotional relationship with a place, meaning there is interaction with and investment in that environment.”

Why Dying at Home Can Lead to Improved End-of-Life Care

While Regier’s study was a secondary data analysis—meaning she was unable to do a deep dive into specific reasons behind satisfaction ratings—she says there are some hypotheses as to why people reported higher satisfaction ratings when they receive care at home.

Based on her own research and many other studies, people experience a comfort in being in their own home, “particularly during vulnerable and uncertain time periods such as coping with an illness.” For people with moderate to severe dementia or cognitive impairment, hospitalizations can be traumatic, she explains.

“The unfamiliar and often chaotic hospital environment can lead to anxiety, confusion, and disorientation for this population, and is associated with poorer end-of-life outcomes,” Regier says. “Furthermore, hospitals are usually not tailored for meeting the needs of people with dementia.”

Even for people without cognitive impairment, there are various reasons why palliative patients prefer to die at home, says Susan Enguídanos, PhD, an associate professor of gerontology at the University of Southern California. Enguidanos has researched home-based palliative care and has found that patients who receive in-home treatment report greater satisfaction with care than hospital patients.

She says while higher satisfaction rates may not specifically be tied to dying itself, it likely has to do with the type of health care they receive in the home, including nurses, social workers, doctors and chaplains. It’s also often preferable to be surrounded by family in the home rather than a more sterile environment, like a hospital, that lacks the same privacy and comfort.

Enguídanos points to a study that shows cancer patients who died at home had less physical and emotional distress and better quality of life at end of life compared with those dying in the hospital. The study also found that ICU or hospital deaths were associated with an increased risk of mental health distress for caregivers.2

Reduced Cost of Care

Aside from the emotional and mental benefit, people who received home care were less likely to visit the emergency department, resulting in lower costs to the health care system, according to one of Enguidanos’ studies.3

“Our hypothesis is that because they received more and regular care in the home, plus their caregivers received training in how to manage their symptoms [and] they had access to a nurse (and doctor if needed) 24/7, they had improved management and therefore had less need for emergency room visits and subsequent hospitalizations,” Enguidanos tells Verywell.

Need for Patient Planning Around End-of-Life Care

Based on research, it’s clear that patients’ preferences and feelings around end-of-life care can have a significant impact on the quality of their last days. Regier and her colleagues’ findings indicate that discussions of end-of-life care planning can help inform palliative policy and “facilitate greater well‐being at end‐of‐life.”

For patients with dementia, Regier says these end-of-life care conversations should happen as soon as possible. Preferably prior to the onset of dementia, or before dementia or other illnesses have progressed to more advanced stages.

“Conversations about goals of care help to guide the treatment approach, keep the lines of communication open, and make sure everyone is on the same page regarding what constitutes optimum care for the patient,” Regier explains.

What This Means For You

Patients should be involved in their end-of-life care planning, as research shows preference around care can have a significant impact on their well-being.

Enguidanos echoes this stance, and says that given the evidence of improved patient outcomes for home-based palliative care and lower medical costs, it makes sense to support this model of care should a patient desire it.

“I do believe we need to transform our payment structures to better support this type of care,” Enguidanos says. “Currently, there is no widespread payment structure to support home-based palliative care; in other words, Medicare does not pay for this care.”

>Regier says end-of-life planning needs to include more than just medical information or certain aspects of advance care planning, like preference for life-sustaining measures. This is because “patient preference for the actual place of death is often overlooked.”

This is especially true for seniors with cognitive impairment, she says.

“Research shows that very few people with dementia who are at end-of-life are treated with palliative care, despite the many benefits of this approach (e.g., decreased behavioral symptoms, decreased pain),” Regier says.

“There needs to be greater awareness among providers and families that a palliative and hospice care are wholly appropriate and beneficial for people living with dementia and not just the cognitively healthy.”

  1. Regier NG, Cotte VT, Hansen BR, Taylor JL, Wright RJ. Place of death for persons with and without cognitive impairment in the United States. Journal of the American Geriatric Society. 2021 Jan. doi.org/10.1111/jgs.16979
  2. Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. Journal of Clinical Oncology. 2010 Oct;10;28(29):4457-64. doi:10.1200/JCO.2009.26.3863
  3. Brumley R, Enguidanos S, Cherin D. Effectiveness of a home-based palliative care program for end-of-life. Journal of Palliative Medicine. 2003 Oct;715-724. doi:10.1089/109662103322515220

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‘The Bitter Comes With The Sweet’

— Without Death, There Is No Life

By Mara Buchbinder

In the early days of the pandemic, my days were bookended by stories of death. I woke up each day hours before dawn to work on my book manuscript, happy to have a passion project to soothe my anxious energy. My book chronicles how Vermont patients, caregivers and health care providers navigated medical aid-in-dying, in the aftermath of legalization. In the morning, I combed through my notes, writing feverishly about dying, and in the evening, I absorbed the news of bodies accumulating around the world more quickly than they could be buried.

I have never been more acutely aware of my own mortality. I offered my husband detailed instructions about how to tend to my unfinished manuscript, should the need arise. We joked, with gallows humor, about how my death would make an ironic capstone to the book; he, of course, agreed to pen the afterword for the posthumous publication.

Studying medical aid-in-dying, and now living through the greatest pandemic in 100 years, has forced me to reckon with mortality. Over the five years that I’ve collected stories about death and dying, people have often questioned how I could study such a morbid topic. Isn’t it depressing? The answer is, anything but. Humbling and grounding, yes, and at times terribly sad, but never depressing.

An avid reader since childhood, I have always taken great comfort in stories. When the pandemic began, I realized that immersing myself in stories about death had actually helped me. Thinking about my own inevitable death is sad, but it doesn’t terrify me anymore. At 40, I hope I have a great many years left, but I’m also more or less at peace with my finitude.

Yet last spring, when I picked up Natalie Babbitt’s novel “Tuck Everlasting” to read to my 7-year-old son, I realized it was this book that first made me address my mortality, some 30 years ago.

If the concept of mortality was terrifying to me, the idea of immortality was even more so.

Published in 1975, “Tuck Everlasting” takes place in the 19th century, 87 years after the Tuck family unwittingly drinks from a magical spring that renders them immortal. The story is set in motion when a 10-year-old girl, Winnie Foster, accidentally discovers their secret. They bring her to their woodland cottage to persuade her to keep quiet, warning her of the catastrophe that would ensue if news of the spring were to become public.

The novel quickly charmed educators and parents, winning numerous literary awards. While it captivates young readers with its lyrical prose, its matter-of-fact philosophizing on life and death set it apart. In a key scene, Angus, the patriarch of the Tuck family, explains to Winnie that dying is an unavoidable part of the “wheel of life.” The bitter comes with the sweet. It is the difference between having a life and merely being alive. You can’t have living without dying.

The Tucks haunted my childhood. To my 10-year-old self, it seemed clear that the only thing scarier than dying was not dying. How awful it would be to outlive nearly everyone that you love! How bleak it would feel to be resigned to a life of complete social isolation. If the concept of mortality was terrifying to me, the idea of immortality was even more so.

This is precisely what the author had in mind. Babbitt wrote the book to tame the worries of her daughter Lucy, who was then 4-years-old. Babbitt wanted to help Lucy understand that dying was a natural part of the wheel of life, that not dying is much less desirable than it may seem.

Flipping cultural scripts on fears about death: this is the power of stories.

As a non-fiction author, I write for reasons not so different from Babbitt’s. I use real people’s stories to examine cultural fears about death — in my case, about lack of control over dying. Medical aid-in-dying offers what is, for many, a seductive vision of personal control over dying, and the promise of a peaceful, sanitized death. Yet such control often proves illusory, both because access to assisted death is much more complicated than it may seem, and because death, itself, is wily.

People have often questioned how I could study such a morbid topic. Isn’t it depressing? The answer is, anything but.

I think about a woman in her mid-60s I’ll call Candace, who developed metastatic cancer. Once it was clear that she was not going to get better, Candace decided to die on her own terms, with medical assistance. She procured the lethal prescription, which was no easy feat, because many physicians are reluctant to participate in the process. By the time she was ready to die, however, she was no longer able to ingest the medication.

The pandemic has made me even more sure that, like Candace, we are not in control of our destinies. But the Tucks weren’t in control, either. They waited passively, resigned to let the oppressive unfurling of time wash over them. In this sense, immortality’s promise of control over death is also illusory. It is poignant that the Tucks look forward to the day, every 10 years, when their sons return to the family cottage. During the pandemic’s eternal spring, when days bled into weeks and then months, I identified with this feeling, marking my days with UPS deliveries, as time moved ever so slowly.

During the pandemic, I have been in the fortunate position of being able to forestall illness and death with the appropriate precautions, such as staying at home. These measures should permit me to avoid the wrong sort of death. (There is universal agreement at this point that dying from COVID-19 is the wrong sort of death.) But I cannot avoid death altogether, nor (I think) would I want to

Now, 10 months into this crisis, my book is complete. The wheel spins on. The end of the pandemic no longer feels as far off and impossible as it did last spring. And still, I wonder what kind of story I am in. I marvel at that wonder.

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Is End of Life Its Own Stage of Life?

A sociologist makes the case for embracing this period as a distinct life stage

By Lola Butcher

Deborah Carr, professor and chair of the sociology department at Boston University, has spent much of her career studying death and dying. That expertise led, in 2019, to an invitation to write an article in the Annual Review of Sociology about well-being at the end of life.

“When I started writing what I knew about things like pain and suffering at the end of life, it dawned on me that we need to interrogate: What is end of life?” Carr said. “We don’t actually have a clear definition.”

At the Gerontological Society of America’s annual scientific meeting last year, Carr proposed that “dying” or “end of life” should be considered a new life course stage. In an interview with Next Avenue, she discussed the merits of the idea.

Q: Why do you consider end of life its own life course stage?

Deborah Carr: The end-of-life period is longer than it ever was historically. A hundred years ago, people would die suddenly or shortly after becoming sick. Unfortunately, we are actually seeing an uptick of that short duration with COVID-19. But for most other leading causes of death among older adults — cancer, heart disease, chronic obstructive pulmonary disorder — there can be a very long time period between becoming sick and dying.

If we think about the end-of-life stage as something that we can have some agency over … it may demystify it.

As I started thinking about this expanded period, I realized that end of life is like any other life course stage. There are developmental tasks — things we should do — during this stage to ensure smooth transitions.

Just as we learn, as children, how to be a teenager and then how to be an adult, maybe we need to learn how to prepare for the end-of-life stage.

What are the other life course stages?

The main stages are infancy, childhood, adolescence, young adulthood, midlife and old age. Even though these stages make sense to us now, some of them are actually pretty new.

For example, the notion of adolescence didn’t even exist until the very early twentieth century because many would go from being children to adults before high school and college were widely attended, and when child labor was common.

Likewise, midlife, or middle age, is a pretty modern construction.

How does the end-of-life stage differ from old age?

I think it’s important that, culturally, we move away from the notion that old age equals death, because that is ageist.

Obviously, old age is among the most powerful risk factors for death, but about twenty-five percent of all people who die each year are under age sixty-five.

And many older adults are perfectly healthy; they aren’t in the end-of-life stage unless something happens like they get COVID and die a week later, for instance.

When does the end-of-life stage begin?

Some life-course stages have biological or legal markers. For example, adolescence generally correlates to puberty; in most states, people are legally considered adults at age eighteen; old age is typically thought to start at sixty-five when most people become eligible for Medicare and Social Security.

End of life is different in that the starting point is unclear. We can’t definitely state when the end-of-life stage starts, because illness trajectories are uncertain.

The important thing is that, once they start developing major chronic illnesses, people — whether they expect to continue living for one year or four years or ten years — should think about how they want to live during that stage of life. I’d encourage them to discuss the topic with family members, embrace it and take the steps that one needs to do in order to have that stage of life be as pain-free and peaceful as possible.

People could critique this idea on the grounds of ‘Well, how do you prove someone is in the end-of-life stage?’ I’m not out to prove anything, but just really to reshape our thinking of how we can prepare for, rather than avoid thinking about, the inevitable.

You mentioned ‘developmental tasks’ that need to occur at the end of life. What’s on the to-do list at this stage?

Just as you tell kids to eat their vegetables so they will be healthy as an adult, there are things that we can encourage people to do to prepare for the end of life.

Talk about what kind of funeral rites — if any — match your personal preferences. Talk to your loved ones about how they will survive financially without you. Encourage couples to have conversations about how the surviving spouse will manage finances and household tasks.

All of these preparations are things that I hope people are doing already. But often they don’t, because we as a society fear death. If we think about the end-of-life stage as something that we can have some agency over, something we can control to the best of our capacities, it may demystify it and really destigmatize it a bit.

You’re talking about something much bigger than filling out an advance care planning document, right?

Advance care planning is something that one should do early in life to help facilitate the transition to end of life. Have those conversations early and often because your preferences are likely to change over time.

Oftentimes, people do advance care planning too little, too late. For instance, when someone is given an opportunity to do a living will after they arrive at the hospital and is already dying or in severe discomfort, that’s not the optimal moment to do planning because the patient and family may be in distress.

So, we can think about advance care planning as something that we do earlier in life that helps to have a more satisfactory end-of-life period that accords with one’s wishes. It also can make the end-of-life period easier for loved ones. 

It’s really hard emotionally to make a decision for someone else’s end-of-life care. It helps when people who are in that stage of life have already brought their family members on board and talked about what their preferences, values and fears are.

Not to trivialize, but in some ways it’s like those old anti-drug ads: “Just talk to your kids about drugs.’ Just talk to your loved ones about end of life because it will help you all prepare.

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