If your family is like mine, you enjoy coming together to talk about living your best lives, planning vacations and making sure you are incorporating the activities and people you love into your calendar. But my family, perhaps unlike your family, also appreciates opportunities to discuss plans and preferences pertaining to potential health issues and scenarios, what we want our final days to look like, death and dying. We recognize that particularly given my profession, this might make us the exception to the norm. But it doesn’t have to be.
If you’ve seen the new Barbie movie, you can appreciate that I often feel like most people are the supporting characters in that film–dancing and having a great time–and I’m the one asking, “Do you guys ever think about dying?” It can certainly cause the record to scratch and the music to stop.
I’m incredibly grateful for my family’s willingness to engage in crucial conversations. After years serving and observing as a hospice and palliative care social worker, I boldly support not waiting until it’s too late to start talking about advance care planning (ACP) and end-of-life planning. I recommend inviting the people who matter most to us to have these discussions so that we know how to advocate for them in the event of a medical crisis and they know how to do so for us. Is it as light and lovely as vacation planning? Probably not. But it is one of the greatest gifts we can give to the people we care about.
Making ACP approachable
We live in a society where people predominantly avoid the subjects of aging and death. This can make it very challenging to broach the subject of end-of-life preferences. But I tell people to start by simply opening the door, metaphorically and physically, and inviting people in to chat. This could be on your own or with the help of an ACP advocate. The important thing is just to start, because these conversations evolve over time and are best when revisited as circumstances and expectations change.
My mom used to tease, with some underpinnings of truth, that her end-of-life plan was for us to “put her on an iceberg with a polar bear.” She grew up in a home where talking about death and dying was not the norm, as their faith did not accept the reality of death. As she got older, and three of her five adult children worked in healthcare, Mom became more willing to engage in ACP discussions sans the polar bear. A big motivator for this shift was that we, as a family, began to normalize talking about sickness, dying and death. We invited her to have conversations, and over time, she was able to clearly identify the person she wanted to make healthcare decisions for her if she could not make her own and state what her treatment preferences were for future care.
Setting the stage and starting the dialogue
You, too, should begin the conversation about advance care planning with your family and friends. If that makes you anxious or triggers you to feel overwhelmed, I want to offer some suggestions for broaching the subject from a different place.
Here are some ways you can start a crucial conversation in a format that feels good for you and your family:
Tee up the discussion in a neutral way. You don’t have to say, “Let’s have a difficult conversation and talk about your death.” These discussions should never be framed in a negative way. Rather, try beginning a dialogue with loved ones from the truth that completing ACP early allows you (and them) to think about and reflect on what is important when health changes, even though that may be years away.
Set the stage or take advantage of the situation. There are times when talking about death and dying fits seamlessly into a conversation or event. For example, if you learn of a sudden medical crisis with an acquaintance or friend, use the news to spark a discussion about what you would want in a similar situation. Similarly, there are settings and scenarios that support this type of intimate conversation. When walking and talking with a loved one, for instance, you can use the dedicated private time together to communicate about your wishes.
Dose these conversations out over time. You don’t have to tackle the entirety of your end-of-life wishes in one sitting or conversation. Talk a bit. If you start to feel overwhelmed or like you’ve made progress, leave it. Talk again when you’re ready.
Emphasize key messages. ACP is good for all adults, regardless of age or health. We have a say in our care. Treatments only work if they work for us, each individually. We can change our minds. But it’s always imperative that you make the things that are most important to you known, so that the people who will be making decisions for you can be your voice.
Lighten the emotional weight of the subject matter. If you struggle with the topic of end-of-life, as many do, there are games available to help guide the dialogue with a brighter approach. The Death Deck, Hello and Morbid Curiosity are great options. There are websites that offer resources like The Conversation Project Starter Kit.
I’ll leave you with this. Last year, I dropped my car off at the dealership to have some work done. The driver of the shuttle who took me to work asked what I did for a living, and I explained my work in advance care planning. By the time we concluded our short commute together, he had my card, and I had his promise that he would speak with his wife and call to schedule an appointment. He did. And you can, too.
Invite the people you love to have the dialogue–as many times as it takes. Be open to the gifts and relief these conversations can bring. Use the resources you need to ease any apprehension. And appreciate the opportunity to make your wishes known, because, unlike in Barbie’s world, we all think about death. We just need to normalize talking about it.
Hospice care and palliative care services have similar, but diverging, threads across the care continuum.
An area of increasing overlap centers around patient consultations discussing symptom management and goals of care.
Supportive care for patients and families is a common thread in both hospice and palliative care, with providers touching different points along a patients’ disease trajectory, according to Brynn Bowman, CEO of the Center to Advance Palliative Care (CAPC). The organization recently held a conference with the Coalition to Transform Advanced Care (C-TAC).
Palliative care and hospice share some common goals with hospice. Both aim to manage pain and symptoms for patients in critical health stages, she said. Ensuring that patients receive the right form of care at the right time is crucial Bowman indicated.
“Many leaders in the hospice and palliative care fields want the same thing for patients in that philosophical approach to care,” Bowman told Hospice News during the C-TAC-CAPC Leadership Summit in Washington, D.C. “The question is, how do we appropriately make sure that as soon as a person needs supportive palliative services, that they have the right access at the right time and the transition to hospice as it continues to evolve is appropriate.”
Hospices have increasingly built out palliative care as an additional business line, a trend that continues to accelerate.
More than half (56%) of hospice care professionals indicated that their organizations planned to launch palliative care programs during 2023 in this year’s Hospice News Industry Outlook Survey, prepared in collaboration with Homecare Homebase. This is up from last year’s results in which 52% of respondents reported the same. Survey respondents included nearly 330 hospice and palliative care industry professionals, including owners, executive leaders and managers, among others
Hospices seeking to reach patients further upstream could benefit from integrating a palliative consultative model into their works, according to Allison Silvers, chief health care transformation officer at CAPC.
“Hospice is a model with a definition of what gets delivered, how often and by whom,” Silvers told Hospice News at the summit. “One opportunity that could be better utilized is a consultative model, but it is a divergence for a consult. Hospice is a symptoms management model, but there’s also a delineating line there, particularly in the requirement to give up curative treatment. And that doesn’t fit a lot of patients and families’ beliefs. There’s opportunities to get rid of the ‘giving up’ component in palliative care where patients can be much better served.”
A headwind hospices often face in their growing palliative lines is a lack of awareness around the nature of these services among the general public and health professionals alike. Common issues are that medical and nursing students do not receive enough exposure to palliative care throughout their training, while patients, families and clinicians often conflate these services with hospice.
More research and education are needed to help fill these knowledge gaps and improve understanding of both hospice and palliative care and how they differ, said Dr. Andy Esch, palliative care specialist and CAPC’s senior education advisor.
Better understanding could foster improved care coordination between hospice and palliative care, helping providers to address unmet patient needs, he stated.
“Through education, awareness and research, we need to make it automatic for anybody interfacing with a patient to recognize suffering or an unmet need and figure out where to refer them and think about giving them palliative care,” Esch said at the summit. “The job is always making sure patients get the right services they need, and when someone is eligible for hospice, there’s a benefit in that program. And if they don’t qualify, they still deserve to have their symptoms managed, their care coordinated and their spiritual and psychological needs met. We need to make people more aware, and we need research to support the outcomes before it becomes more automatic.”
— The debate over aid in dying still rages in the language that medicine and the media use to describe the practice.
By Rachel E. Gross
In rural Iowa, Peg Sandeen recalls, living with AIDS meant living under the cloud of your neighbors’ judgment. After her husband, John, fell ill in 1992, the rumors began swirling. The couple had almost learned to live with the stigma when things took a turn for the worse.
In 1993, ravaged by his disease and running out of options, John wanted to make one final decision: to die on his own terms, with the help of life-ending medication. But at the time, there was no way to convey to his doctors what he wanted. As the debate over assisted dying raged in far-off Oregon, the headlines offered up only loaded words: murder, euthanasia, suicide.
John was adamant that what he wanted was not suicide. He loved his life: his wife, who had married him even though he had asked her to leave when he learned he was H.I.V. positive; their 2-year-old daughter, Hannah; and playing Neil Young songs on guitar, a pleasure that was rapidly being taken from him as his faculties slipped away.
“This was not a man who wanted to commit suicide, at all,” said Ms. Sandeen, now the chief executive of Death With Dignity, a group that supports aid-in-dying laws across the country. To her, the word only added more judgment to the homophobia and AIDS phobia that they — and others who found themselves in a similar position — were facing.
John had expressed to his wife his wish to die on his own terms. But, to her knowledge, he never spoke about it with his physicians. At the time, it felt impossible to bring it up as simply a medical question, not a moral one.
“Even if the answer was, ‘No, we can’t offer that,’ that would have made such a difference,” she said. “We were just facing so much stigma that even to have the ability to have this end-of-life care conversation would have just been remarkable.”
John succumbed to the virus on Dec. 9, 1993, less than a year before the Death With Dignity Act passed narrowly in Oregon. Since its enactment in 1997, more than 3,700 Oregonians have taken measures permitted by the law, which allows patients with a terminal illness and the approval of two doctors to receive life-ending medication. The practice is now legal in 10 U.S. states and Washington, D.C.
With this shift has come new language. Like the Sandeens, many health advocates and medical professionals insist that a terminally ill patient taking medication to hasten the end is doing something fundamentally different from suicide. The term “medical aid in dying,” they say, is meant to emphasize that someone with a terminal diagnosis is not choosing whether but how to die.
“There is a significant, a meaningful difference between someone seeking to end their life because they have a mental illness, and someone seeking to end their life who is going to die in the very near future anyway,” said Dr. Matthew Wynia, director of the University of Colorado’s Center for Bioethics and Humanities.
In the 1990s, advocates were facing an uphill battle for support. Two assisted-dying bills, in California and Washington, had failed, and the advocates now faced an opposition campaign that mischaracterized the practice as doctor-prescribed death. “At the time, the issue very badly needed to be rebranded and repositioned,” said Eli Stutsman, a lawyer and a main author of the Death With Dignity Act. “And that’s what we did.”
The text of the law, however, only defined the practice by what it was not: mercy killing, homicide, suicide or euthanasia. (In the United States, euthanasia means that a physician actively administers the life-ending substance. That practice has never been legal in the United States, although it is in Canada.)
New terms soon became inevitable. Barbara Coombs Lee, an author of the law and president at the time of the advocacy group Compassion and Choices, remembers a meeting in 2004 where her group discussed which terminology to use going forward. The impetus “was probably another frustrated conversation about another interminable interview with a reporter who insisted on calling it suicide,” she said.
A phrase like “medical aid in dying,” they concluded, would reassure patients that they were taking part in a process that was regulated and medically sanctioned. “Medicine has that legitimating power, like it or not,” says Anita Hannig, an anthropologist at Brandeis University and author of the book “The Day I Die: The Untold Story of Assisted Dying in America.” “That really removes a lot of the stigma.”
By contrast, words like “suicide” could have a devastating effect on patients and their families, as Dr. Hannig learned in her research. Grieving relatives might be left feeling shamed, isolated or unsupported by strangers or acquaintances who assumed that the loved one had “suicided.” Dying patients often hid their true wishes from their doctors, because they feared judgment or struggled to reconcile their personal views on suicide.
Unlike an older term, “physician aid in dying,” “medical aid in dying” also centered on the patient. “This is not a decision the physician’s making — this is not even a suggestion the physician is making,” said Ms. Coombs Lee, who has worked as an emergency-room nurse and a physician assistant. “The physician’s role is really secondary.”
An equally important consideration was how the phrase would be taken up by the medical community. Doctors in Oregon were already practicing aid in dying and publishing research on it. But without agreed-upon terms, they either defaulted to “assisted suicide” (generally used by opponents of the law) or “death with dignity” (the term chosen by advocates for the name of the law). A more neutral phrase, one that doctors could use with each other and in their research, was needed.
Not all organizations today agree that “medical aid in dying” is neutral. The Associated Press Stylebook still advises referring to “physician-assisted suicide,” noting that “aid in dying” is a term used by advocacy groups. The American Medical Association also uses this language: In 2019, a report from the association’s Council on Ethical and Judicial Affairs concluded that “despite its negative connotations, the term ‘physician assisted suicide’ describes the practice with the greatest precision. Most importantly, it clearly distinguishes the practice from euthanasia.”
Medical language has long shaped — and reshaped — how we understand death. Dr. Hannig noted that the concept of brain death did not exist until 1968. Until then, a patient whose brain activity had ceased but whose heart was still beating was still legally alive. One consequence was that any doctor removing the patient’s organs for transplant would have been committing a crime — a serious concern for a profession that is notoriously fearful of lawsuits.
In 1968, a Harvard Medical School committee came to the conclusion that “irreversible coma,” now known as brain death, should be considered a new criterion for death. This new definition — a legal one, rather than a biological one — has paved the way for organ transplantation around the world. “Before the definition of death was changed, those physicians would be called murderers,” Dr. Hannig said. “Now you have a totally new definition of death.”
Of course, doctors have always assisted patients who sought a better end. But in the past, it was usually in secret and under the shroud of euphemism.
“Back in the day, before the laws were passed, it was known as a wink and a nod,” said Dr. David Grube, a retired family physician in Oregon who began prescribing life-ending medications after one of his terminally ill patient violently took his own life. He knew doctors in the 1970s and ’80s who prescribed sleeping pills to terminally ill patients and let on that combining them with alcohol would lead to a peaceful death.
For a brief time after the Death With Dignity law was passed, some doctors used the word “hastening” to emphasize that the patient was already dying and that the physician was merely nudging along an unavoidable fate. That term did not catch on, in part because hospices did not like to advertise that they were shortening lives, and patients did not like hearing that hospice care might lead to their “hastening.”
In the absence of other language, the name of the law itself became the preferred term. The phrase allowed patients to open conversations with their physicians without feeling as though they were raising a taboo subject, and doctors understood immediately what was meant. The name has stuck: Even in his retirement, Dr. Grube gets calls from patients asking to talk about “death with dignity.”
Yet in some ways, Dr. Grube believes the use of the word “dignity” was unfortunate. To him, the crucial point is not the kind of death a patient chooses, but that the patient has a choice. “You can have a dignified death when you pull out all the stops and it doesn’t work,” he said. “If that’s what you want, it’s dignified. Dignity is defined by the patient.”
To him, that means avoiding language that heaps judgment on people who are already suffering. “There’s no place for shaming language in end-of-life,” Dr. Grube said. “It shouldn’t be there.”
Grief is an inevitable part of life and an emotion that can be quite overwhelming to experience. It can be brought on by many things, from losing a loved one to being diagnosed with a serious medical condition or even a job loss. When someone is grieving, there are a lot of emotional and mental symptoms that are often discussed- things like sadness, depression, and anxiety.
However, what is not often talked about are the many physical symptoms that can manifest when someone is grieving. Some of these symptoms can be alarming, while others can be subtle. In this article, we’ll discuss ten physical symptoms you may be feeling and didn’t know was grief.
Fatigue
One of the most common physical symptoms of grief is fatigue. Grief can take an enormous toll on your body and mind and often leave you feeling mentally and physically drained. Though it may be difficult, it’s essential that those who are grieving make an effort to rest as much as possible.
Insomnia
When someone is grieving, they may find it challenging to get quality sleep. While they may feel tired all the time, getting a full night’s sleep is something they will struggle with. Worry, anxiety, and stress may keep them up at night, leading to further exhaustion, which can make it difficult to maintain a healthy sleep schedule. If you’re struggling with insomnia, it may be helpful to try some relaxation techniques like meditation or yoga in the evening to help you relax your mind before bed. All-natural melatonin may also help you get to sleep.
Change in Appetite
It is common to experience appetite changes while grieving. Some individuals overeat, while others may find they have little to no appetite at all. If the latter is true, try to take a one-a-day multivitamin to ensure your body is getting some minerals. Try to eat a balanced diet, if you can. For those who tend to be emotional eaters, keeping your kitchen stocked with healthy food is ideal.
Physical Aches and Pains
Grief can cause unexplained aches and pains, including headaches, stomach pains, and muscle tension. These may come and go and can spread through the body. It’s important to make sure you take breaks throughout the day, drink water, and stretch to help alleviate these physical symptoms. Yoga can be effective in reducing muscle tension. You may also opt to book a relaxing massage.
Weakened Immune System
Studies have shown that prolonged grief can weaken the immune system, causing an increased risk of illnesses and infections. It’s important to eat well, exercise, and take care of yourself to avoid further illness during this time. Speak to your doctor or health care provider if you are coming down with infections and illnesses more often.
Digestive Issues
Grief can bring on stomach pain, nausea, and digestive issues. While these symptoms can be uncomfortable, they’re typically temporary and short-lived. However, if they persist, it may be helpful to seek advice from a medical professional. Drinking herbal tea and plenty of water throughout the day may help relieve some of these issues. Also, watch what you eat. If you are an emotional eater, try to reduce your junk food intake and increase your fruit, veggies, and healthy foods.
Breathing Difficulties
For some individuals, grieving may make breathing more challenging. This can manifest as shortness of breath or shallow breathing. It’s important to take steps to regulate your breathing through relaxation techniques like deep breathing, meditation, or gentle exercise.
High Blood Pressure
Prolonged grief can lead to hypertension, also known as high blood pressure. It’s essential to remain mindful of your diet and exercise, as well as thinking positive thoughts to reduce stress and your risk of developing high blood pressure. Practicing mindfulness may help ease your anxiety and grief, even just a little.
Chest Pain
Many people who are grieving often complain of having chest pain. This may be due to muscle tension, shortness of breath, or a feeling of ‘heaviness’ in the chest. If you experience chest pain, it’s important to seek medical attention immediately to rule out any other underlying causes.
Skin Irritations
Rash and hives are also physical symptoms of grief. Stress can cause skin irritations, so it is essential to take care of your skin health at this time. If you notice a rash forming, apply some natural antiseptic such as aloe vera gel or even a mixture of coconut oil and tea tree oil.
Conclusion
Grief is a natural process, but it can bring along with it several uncomfortable physical symptoms. While it’s important to try to manage your symptoms, it’s also essential to remember that everyone’s grieving process is different, and there is no ‘right’ way to grieve.
If you’re struggling with physical symptoms of grief, don’t hesitate to reach out, talk to someone, and seek medical aid if necessary. Remember that it takes time to heal and recover and that with patience and self-care, you can find inner peace and solace.
Dying alone usually has a negative connotation attached to it. This is probably why movies portray it as sad and heartbreaking. On the flip side, dying while being surrounded by friends and family is often thought of as a good death. The person was loved and made to feel secure as they passed on. They didn’t have to endure the pain of dying alone.
But what happens in the final moments of death is a subject that’s largely still being discovered. No one really knows for sure definite answers to the big questions like “Does your consciousness continue after you stop breathing?” or “Will you have a better death if you have loved ones surrounding your bed?”
Social researcher and death studies scholar Glenys Caswell from Nottingham University noted that, for some people, dying alone is something that they choose of their own accord (via The Conversation). One of Caswell’s studies, which was published in the journal Mortality in 2017, involved interviewing 11 elderly persons who lived by themselves and seven hospice nurses about their thoughts surrounding dying alone. While there was some belief among the hospice nurses that dying alone is not something they’d endorse, Caswell found that for the older people, “dying alone was not seen as something that is automatically bad, and for some of the older people it was to be preferred.” They preferred it to having their freedom curtailed or being confined to a care home.
They might die alone to spare their loved ones pain
“We have those patients who die in the middle of the night. We hear stories about the loved one who just stepped out for five minutes and the patient died. We may have even witnessed a quick death ourselves. I believe this happens by the patient’s choice,” wrote Miles. She added that this happens mostly in instances when the dying person is a parent. “I believe it is a protective factor,” she explained.
Henry Fersko-Weiss, a licensed clinical social worker and executive director of the International End-of-Life Doula Association, feels slightly differently about the topic. While he doesn’t discount the fact that some people might die alone, he shared in a YouTube video that people like feeling connected and safe before they pass away. Fersko-Weiss said that “because of the way we think about death, [we] feel that we’ll be a burden to loved ones” if we let them see us die. Sparing loved ones the pain of it all might be at the heart of the decision but this is something friends and family should have an open conversation about, he added
Having an open dialogue with your loved one can help
No matter how painful those final moments might be, it can be a good idea to equip yourself with the right tools to have open conversations that foster understanding on both sides, say the experts. You might want to lean into what dying people want you to know about how they’d ideally want to go, and also assess your own emotions, cultural biases, and ideas around it. If you’re unable to broach the topic yourselves, enlist the help of hospice care workers or even a therapist.
It is possible that the person who is dying is concerned that the loved ones whom they are leaving behind will carry with them for the rest of their lives the burden of seeing them pass, shared Fersko-Weiss in the video. You could reassure them by saying something like, “Of course, we want to be there. It doesn’t matter how it looks or how it sounds or how emotionally difficult it may be to be present. It is part of our love for you that we would want to be there,” said the death doula.
How you choose to be present when someone you love is dying is a decision both the dying and those being left behind can arrive at together, per the experts. And, in the instance when your loved one chooses to wait and die alone, “openness created through discussion might also help to remove some of the guilt that family members feel when they miss the moment of their relative’s death,” added Caswell
A decade ago, Hadley Vlahos was lost. She was a young single mother, searching for meaning and struggling to make ends meet while she navigated nursing school. After earning her degree, working in immediate care, she made the switch to hospice nursing and changed the path of her life. Vlahos, who is 31, found herself drawn to the uncanny, intense and often unexplainable emotional, physical and intellectual gray zones that come along with caring for those at the end of their lives, areas of uncertainty that she calls “the in-between.” That’s also the title of her first book, which was published this summer. “The In-Between: Unforgettable Encounters During Life’s Final Moments” is structured around her experiences — tragic, graceful, earthy and, at times, apparently supernatural — with 11 of her hospice patients, as well as her mother-in-law, who was also dying. The book has so far spent 13 weeks on the New York Times best-seller list. “It’s all been very surprising,” says Vlahos, who despite her newfound success as an author and her two-million-plus followers on social media, still works as a hospice nurse outside New Orleans. “But I think that people are seeing their loved ones in these stories.”
What should more people know about death? I think they should know what they want. I’ve been in more situations than you could imagine where people just don’t know. Do they want to be in a nursing home at the end or at home? Organ donation? Do you want to be buried or cremated? The issue is a little deeper here: Someone gets diagnosed with a terminal illness, and we have a culture where you have to “fight.” That’s the terminology we use: “Fight against it.” So the family won’t say, “Do you want to be buried or cremated?” because those are not fighting words. I have had situations where someone has had terminal cancer for three years, and they die, and I say: “Do they want to be buried or cremated? Because I’ve told the funeral home I’d call.” And the family goes, “I don’t know what they wanted.” I’m like, We’ve known about this for three years! But no one wants to say: “You are going to die. What do you want us to do?” It’s against that culture of “You’re going to beat this.”
Is it hard to let go of other people’s sadness and grief at the end of a day at work? Yeah. There’s this moment, especially when I’ve taken care of someone for a while, where I’ll walk outside and I’ll go fill up my gas tank and it’s like: Wow, all these other people have no idea that we just lost someone great. The world lost somebody great, and they’re getting a sandwich. It is this strange feeling. I take some time, and mentally I say: “Thank you for allowing me to take care of you. I really enjoyed taking care of you.” Because I think that they can hear me.
The idea in your book of “the in-between” is applied so starkly: It’s the time in a person’s life when they’re alive, but death is right there. But we’re all living in the in-between every single moment of our lives. We are.
So how might people be able to hold on to appreciation for that reality, even if we’re not medically near the end? It’s hard. I think it’s important to remind ourselves of it. It’s like, you read a book and you highlight it, but you have to pick it back up. You have to keep reading it. You have to. Until it really becomes a habit to think about it and acknowledge it.
I was reading these articles recently about how scientists are pursuing breakthroughs that could extend the human life span to one hundred twenty.1
1 Examples of which could include devising drug cocktails that get rid of senescent cells and filtering old blood to remove molecules that inhibit healing.
There’s some part of people that thinks they can cheat death — and, of course, you can’t. But what do you think about the prospect of extending the human life span? I don’t want to live to be 120. I have spent enough time around people who are close to 100, over 100, to know that once you start burying your children, you’re ready. Personally, I’ve never met someone 100 or older who still wants to be alive. I have this analogy that I did a TikTok2
2 Vlahos has 1.7 million followers on TikTok, where she posts about her experience as a hospice nurse and often responds to questions about death and dying.
on. This is from having a conversation with someone over 100, and her feeling is that you start with your Earth room when you’re born: You have your parents, your grandparents, your siblings. As you get older, your Earth room starts to have more people: You start making friends and college roommates and relationships. Then you start having kids. And at some point, people start exiting and going to the next room: the afterlife. From what she told me, it’s like you get to a point when you’re older that you start looking at what that other room would be, the afterlife room,3
3 According to a 2021 Pew Research survey, 73 percent of American adults say they believe in heaven.
and being like, I miss those people. It’s not because you don’t love the people on Earth, but the people you built your life with are no longer here. I have been around so many people who are that age, and a majority of them — they’re ready to go see those people again.
“The In-Between” also has to do with the experience of being in between uncertainty and knowing. But how much uncertainty is there for you? Because in the book you write about things that you can’t explain, like people who are close to death telling you that they’re seeing their dead loved ones again. But then you write, “I do believe that our loved ones come to get us when we pass.”4
4 From Vlahos’s book: “I don’t think that we can explain everything that happens here on Earth, much less whatever comes after we physically leave our bodies. I do believe that our loved ones come to get us when we pass, and I don’t believe that’s the result of a chemical reaction in our brain in those final hours.”
So where is the uncertainty? The uncertainty I have is what after this life looks like. People ask me for those answers, and I don’t have them. No one does. I feel like there is something beyond, but I don’t know what it is. When people are having these in-between experiences of seeing deceased loved ones, sometimes it is OK to ask what they’re seeing. I find that they’ll say, “Oh, I’m going on a trip,” or they can’t seem to find the words to explain it. So the conclusion I’ve come to is whatever is next cannot be explained with the language and the knowledge that we have here on Earth.
An image from Hadley Vlahos’s TikTok account, where she often posts role-playing scenes and video tutorials. She has more than two million followers across social media.
Do these experiences feel religious to you? No, and that was one of the most convincing things for me. It does not matter what their background is — if they believe in nothing, if they are the most religious person, if they grew up in a different country, rich or poor. They all tell me the same things. And it’s not like a dream, which is what I think a lot of people think it is. Like, Oh, I went to sleep, and I had a dream. What it is instead is this overwhelming sense of peace. People feel this peace, and they will talk to me, just like you and I are talking, and then they will also talk to their deceased loved ones. I see that over and over again: They are not confused; there’s no change in their medications. Other hospice nurses, people who have been doing this longer than me, or physicians, we all believe in this.
Do you have a sense of whether emergency-room nurses5
5 Who, because of the nature of their jobs, are more likely than hospice nurses to see violent, painful deaths.
report similar things? I interned in the E.R., and the nurse I was shadowing said that no one who works in the E.R. believes in an afterlife. I asked myself: Well, how do I know who’s correct? How am I supposed to know? Are the people in the church that I was raised with6
6 Vlahos was raised in an Episcopalian family. She now refers to herself, as so many do, as spiritual rather than religious
more correct than all these people? How are you supposed to know what’s right and what’s not?
But you’ve made a choice about what you believe. So what makes you believe it? I totally get it: People are like, I don’t know what you’re talking about. So, OK, medically someone’s at the end of their life. Many times — not all the time — there will be up to a minute between breaths. That can go on for hours. A lot of times there will be family there, and you’re pretty much just staring at someone being like, When is the last breath going to come? It’s stressful. What is so interesting to me is that almost everyone will know exactly when it is someone’s last breath. That moment. Not one minute later. We are somehow aware that a certain energy is not there. I’ve looked for different explanations, and a lot of the explanations do not match my experiences.
That reminds me of how people say someone just gives off a bad vibe. Oh, I totally believe in bad vibes.
But I think there must be subconscious cues that we’re picking up that we don’t know how to measure scientifically. That’s different from saying it’s supernatural. We might not know why, but there’s nothing magic going on. You don’t have any kind of doubts?
None. Really? That’s so interesting. You know, I read your article with the atheist.7
7 “How to Live a Happy Life, From a Leading Atheist,” an interview with the philosopher Daniel C. Dennett, published in August.
I feel like you pushed back on him.
There areso many things in our lives, both on the small and the big scale, that we don’t understand. But I don’t think that means they’re beyond understanding. OK, you know what you would like? Because I know that you’re like, “I believe this,” but you seem to me very interested; you’re not just set in your ways. Have you ever heard that little story about two twins in a womb?8
8 Known as the parable of the twins, this story was popularized by the self-help author Dr. Wayne W. Dyer in his 1995 book “Your Sacred Self: Making the Decision to Be Free.”
I’m going to totally butcher it, but essentially it’s two twins who can talk in the womb. One twin is like, “I don’t think that there is any life after birth.” And the other is like, “I don’t know; I believe that there is something after we’re born.” “Well, no one’s ever come back after birth to tell us that there is.” “I think that there’s going to be a world where we can live without the umbilical cord and there’s light.” “What are you talking about? You’re crazy.” I think about it a lot. Do we just not have enough perspective here to see what could come next? I think you’ll like that story.
For the dying people who don’t experience what you describe — and especially their loved ones — is your book maybe setting them up to think, like: Did I do something wrong? Was my faith not strong enough? When I’m in the home, I will always prepare people for the worst-case scenario, which is that sometimes it looks like people might be close to going into a coma, and they haven’t seen anyone, and the family is extremely religious. I will talk to them and say, “In my own experience, only 30 percent of people can even communicate to us that they are seeing people.” So I try to be with my families and really prepare them for the worst-case scenario. But that is something I had to learn over time.
Have you thought about what a good death would be for you? I want to be at home. I want to have my immediate family come and go as they want, and I want a living funeral. I don’t want people to say, “This is my favorite memory of her,” when I’m gone. Come when I’m dying, and let’s talk about those memories together. There have been times when patients have shared with me that they just don’t think anyone cares about them. Then I’ll go to their funeral and listen to the most beautiful eulogies. I believe they can still hear it and are aware of it, but I’m also like, Gosh, I wish that before they died, they heard you say these things. That’s what I want.
You know, I have a really hard time with the supernatural aspects, but I think the work that you do isnoble and valuable. There’s so much stuff we spend time thinking about and talking about that is less meaningful than what it means for those close to us to die. I have had so many people reach out to me who are just like you: “I don’t believe in the supernatural, but my grandfather went through this, and I appreciate getting more of an understanding. I feel like I’m not alone.” Even if they’re also like, “This is crazy,” people being able to feel not alone is valuable.
This interview has been edited and condensed for clarity from two conversations.
A cemetery plot designated for green burial in Cherokee Township Cemetery near North San Juan, Calif.
By Paul Thornton
To get a sense of how progressive ideals don’t always reflect actual practice, try burying a dead relative in Southern California. You’ll find that even in this land where people talk about sustainability, saying farewell in an environmentally responsible manner is, for most people, nearly impossible.
I came to grips with that reality in August, when my mother died from an unexpected illness. Making the final arrangements was my job, and I valued the experience as much as one can while gripped by grief.
My mother, a nurse and devout Lutheran, spent her life caring for the world around her and the people whom Jesus called “the least of these brothers and sisters.” I felt strongly that her remains should be handled in a way that reflected her values and, to some extent, mine.
As funeral director and poet Thomas Lynch wrote, “By getting the dead where they need to go, the living get where they need to be.”
And where are the living? On a planet in serious peril, where resource- and land-intensive burial practices reflect the overconsumption that put us in this mess. So, in the days just before my mom’s death, and with the clock ticking fast, I explored “green burial” options in Southern California that minimize environmental impacts.
That involved ditching the local (and very expensive) mortuary giant Forest Lawn — where seemingly everyone in Glendale, my mom’s hometown, goes to spend eternity — and calling smaller funeral homes that advertise eco-friendly options.
I settled on a small business in Hollywood that partners with a natural burial cemetery — where the land is minimally disturbed and traditional embalming isn’t allowed — and even offers an intriguing “human composting” option. Crucially, prices for the most common services are listed prominently on the funeral home’s website (note to other mortuaries: Please do this).
But the eco-friendly options had serious drawbacks. The natural burial cemetery is near Joshua Tree (gorgeous, but 120 miles away), and human composting — a process that accelerates decomposition and, within a month, turns a body into nutrient-dense soil — isn’t yet legal in California and would have required shipping my dead mother to Washington state.
Burial options that require two-hour flights or three-hour car drives don’t strike me as green. Even in this era of heightened environmental consciousness, the most accessible disposal options are not the sustainable ones. Our final choice: local cremation.
Still, the future for handling the dead in an environmentally sound way isn’t totally dim. Last year, California passed a law to allow human composting starting in 2027. And, although there are only two fully natural burial grounds certified by the Green Burial Council in all of California (none of them near Los Angeles), more “traditional” cemeteries are offering some environmentally friendly options.
Sarah Chavez, executive director of the L.A.-based advocacy group the Order of the Good Death, told me these cemeteries and California lawmakers are responding to an increasing demand for burials that not only conserve resources, but are also more meaningful to the people seeking them.
She said the $20-billion U.S. funeral industry has commodified death in a way that has made people scared of their dead loved ones, convinced that only trained, very expensive professionals must take over the moment a relative dies.
I told Chavez my family resisted this routine, even if we didn’t get a green burial. The funeral home accommodated our request to sit with my mom for several hours before it sent workers to pick her up. In that time, the few of us there had a mini-funeral.
We alternated between tears, laughter and prayers, all while my mom was there with us. Her body was not hazardous waste to be swiftly disposed of.
Chavez said our experience reflects a grassroots change in death services. Her group supports families taking a more active role in burials. She said many people entering the funeral industry now are women who recognize the need for change, which I noticed in making my arrangements as well.
From this desire for more control, we’ll get more green burial options in the future. Just not in time for my mom.
