It’s Never Too Soon to Start End-of-Life Conversations

— Patients can make their preferences known away from the pressures of acute illness

By Fred Pelzman, MD

There are the things that matter, and then there are the things that really matter.

As I’ve often written, through the course of a primary care office visit, and over the course of a long-term relationship between a patient and their primary care doctor, there are so many things we need to attend to.

So many acute issues, so many chronic medical problems, so many unmet health needs, so many social determinants of health that our patients struggle with, the massive issues of mental health, and the healthcare inequities and disparities that exist across the spectrum of our society.

I’ve written before about how much time it would take to take care of everything — to go through all the patient’s issues, all the vaccines and other healthcare maintenance items, all the screenings mandated by insurance companies, and all the questionnaires that bombard our patients (and us) from before their visit even starts through the time they leave the practice.

But of course, there are often things that get left unsaid, unattended to, or put off for another day.

Apart from the moment a decision is finally required, we oftentimes put off end-of-life discussions and other issues surrounding these complicated topics.

Things like signing a healthcare proxyopens in a new tab or window, having a discussion with their family about what they would want done at their end-of-lifeopens in a new tab or window, whether they want to donateopens in a new tab or window their organs, whether they want an autopsy when they pass.

Each of these topics could take a day, a week, a month, a year, a lifetime.

Patients’ ideas about each of these things change over time, change with their circumstances, change in the moment.

What we think we want when we’re young and healthy and seemingly immortal sometimes changes in the heat of a critical moment, a catastrophic illness, a tipping point, a time to decide.

How many times have each of us had a patient who got to this point and both doctors and the patient’s family wished we’d had more time to talk to them to understand what their loved one really wanted.

As part of my initial visit with patients, I tell them I’m there to be an advocate for their health, to help them navigate through our incredibly challenging healthcare system, and to try and be there for them as much as I can.

Our practice used to hand out paper copies of the New York State healthcare proxy and living wills forms.

But somewhere along the line — perhaps due to the cost of printing all those paper forms — the hospital decided we wouldn’t be doing that anymore.

Now when I meet a new patient, I send them a link to those forms in the electronic after-visit summary once we’ve wrapped up for the day, and they can print them out at home. I am hopeful the forms will help them make these decisions in a calm manner, away from the pressures of an acute illness, talking it all over with those that matter most in their lives.

Whenever time allows, I tell my patients — from the youngest to the oldest, the incredibly healthy to the terribly sick — that I have these conversations with everybody, that everyone should make their family and other loved ones know what they would want done in these difficult situations.

I know there is a lot of debate about how much this can change, how the decision to do nothing and pass peacefully can be interrupted by a critical illness when maybe, just maybe, if we only do just a little more, just a few more days, then things might turn around.

But for all of us this is a good place to start: to find out what a patient’s wishes are, to help make things easier for them, for the team of healthcare providers taking care of them, and for everyone who’s close to them who will ultimately be so deeply affected by what happens next.

Perhaps someday we’ll be a mature enough society where, instead of having to convince someone to be an organ donor, the default would be to donate any of our viable organs for the benefit of others (like it is for much of the rest of the world).

Perhaps someday we can use the idea of an autopsy to help advance medical knowledge, to help understand the process of living and dying, to help the next person in line who might benefit from what we learn.

And maybe even someday the issues of a dignified death, of maximizing the use of hospice and palliative care, of helping our loved ones get the peace they desire, will no longer raise such societal ire and create so much resistance.

I know this is a lot, I know that each of these topics comes with an enormous amount of charged societal and emotional baggage, and there are strong opinions on all sides.

For now, I’ll keep telling my patients to think about it, to think about how they’d feel, how they want their family to feel, how much better it will be if everyone is on the same page.

Far too often we’ve seen families torn apart by these decisions during the last days of a patient’s life. And none of us want to see that happen.

Complete Article HERE!

Can Reimagined Hospice Combine Medical Care With Support In Dying?

By Howard Gleckman

After a half-century as a Medicare benefit, hospice care still has had only limited success in improving the quality of patients’ lives as they approach their deaths. While more people are enrolling in hospice (about 1.7 million in 2020), they often do so only days before dying. Thus, they fail to benefit from the best of what hospice has to offer.

As a result, there is increasing interest in new end-of-life care models. One would provide concurrent care that would combine some ongoing treatment for a patent’s underlying disease with end-of-life support. The idea: Encourage more—and quicker—hospice enrollment among those who often reject the benefit because they are “not ready to give up.”

Today, half of hospice patients are enrolled for 18 days or less and one-quarter receive the benefit for fewer than five days.

Medicare pays hospice providers a fixed amount for their obligation to offer full patient care to their enrollees. For example, this year it pays a daily rate of $211 for the first 60 days of routine care and $167-a-day after that.

Benefit Constraints

The hospice benefit comes with two significant constraints. The first: While Medicare pays for all hospice care, including treatment to manage pain and other symptoms, it does not pay for treatment, such as chemotherapy, aimed at curing the patient’s underlying disease.

The second requires a physician to certify that a patient is likely to die within six months of admission to hospice care. Both made sense in the 1980s. Those cancer patients typically enrolled in hospice after they exhausted all treatment aimed at curing their disease. And it was relatively easy for doctors to predict their life expectancy.

These two limitations may have controlled Medicare costs but they discouraged people from enrolling in hospice. Imagine having to sign a form acknowledging you are likely to die in six months or less.

An Alternative

But that may be changing. In one demonstration program, called the Medicare Care Choices Model, participants were more likely to enroll in hospice, receive better quality end-of-life care, and save Medicare money by stopping costly, but ultimately futile, treatment.

However, the program was limited to people with certain diseases, and many operators eventually dropped out.

A recent article in JAMA (paywall) by Natalie C. Ernecoff and Rebecca Anhang Price of the RAND Corporation describes how the new model could work for someone on dialysis to manage kidney failure.

Today, once a patient enrolls in traditional hospice, Medicare stops paying for dialysis. As a result, few kidney failure patients enroll. In a concurrent care model, Medicare would continue to pay for dialysis. But patients might begin to reduce the frequency and eventually stop as they receive more social and spiritual supports.

In some ways, these models look like palliative care that combines comfort care with standard treatment for serious illness. But it would be different in at least one crucial way: Because hospice could not be expected to pay for high-cost treatments, Medicare would have to fund a patient’s care through two payment streams. One for traditional medical care, the other for hospice’s social supports and its very different form of health care.

Challenges

The problem: How to combine a hospice’s nurse-social worker-chaplain model with often-complex medical treatment in the US’s fragmented, poorly coordinated health care system.

At the same time, finding ways to sufficiently pay for this complex care while preventing abuse by unscrupulous providers will be difficult. While many patients fail to benefit from hospice because they enroll too late, some hospice operators have gamed the system by enrolling patients who are not terminally ill. In effect, they collect Medicare’s daily payment without providing any care.

Finally, while large hospices may have the capacity to manage a complex alternative payment model with medical partners, small non-profits will struggle. Currently, of 5,000 hospices, about three-quarters are for-profits.

The World Has Changed

No doubt, something has to change. Until now, Medicare has been paying for hospice based on a model that was designed in the 1980s. Back in the day, the benefit was developed to provide end-of-life care for people with terminal cancer, who typically faced a month or two of serious functional decline before dying.

Major advancements in medical technology, changes in the health conditions of older adults, and a fundamental restructuring of the business of health care have created a very different end-of-life environment from a half century ago. In 2019, for example, about 20 percent of hospice patients had a principal diagnosis of dementia, compared with just 7.5 percent with cancer.

The other big change: Hospice was designed as part of traditional fee-for-service Medicare. But now, more than half of Medicare beneficiaries are enrolled in Medicare Advantage managed care plans that also receive a fixed monthly payment for each member they enroll.

Some observers worry about unintended consequences of a concurrent care model. For example, Brown University’s Joan Teno worries (see here) that a poorly designed concurrent care model could encourage some providers to stop treating patients who could benefit from curative care.

She’s right. The design will be critical. But today, the Medicare payment system is discouraging people who are dying from enrolling in hospice. That needs to change.

Complete Article HERE!

Do end-of-life conversations make you nervous?

by Chris Brinneman, MSW, LCSW

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.

Complete Article HERE!

The Intersections Between Hospice and Palliative Care

By Holly Vossel

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.”

Complete Article HERE!

Why Some People Wait To Die Until They’re Alone

By Jennifer Anandanayagam

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

Lizzy Miles — a Columbus, Ohio-based hospice social worker and author of “Somewhere In Between: The Hokey Pokey, Chocolate Cake and The Shared Death Experience” — is of the opinion that some people can choose when they die. She wrote in the hospice and palliative medicine blog Pallimed that people who choose to wait and die alone might be doing so out of concern for their loved ones.

“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

Complete Article HERE!

A Hospice Nurse on Embracing the Grace of Dying

Hadley Vlahos

By David Marchese

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

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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

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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

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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

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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

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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

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“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 are so 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

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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 is noble 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.

Complete Article HERE!

Can We Choose When We Die?

— What We Know

By Jennifer Anandanayagam

Movies, books, and even personal accounts record how, sometimes, people who are in the last stages of life hold on until something they dearly wished for gets resolved. It could look like reconciling with a loved one, spending time with someone they haven’t seen in years, or getting the blessing of a priest.

Given that there’s a lot we don’t know about what people see and hear before they die, is there any truth to the fact that we can choose when we die? Can we willfully resist death until we’re ready to let go? Science tells us that dying is a process: The person’s breathing slows down; their skin color and temperature change; they might experience difficulty breathing; they could sleep a lot more than usual; and their thinking and other senses may dwindle, per Health Direct. However, according to several hospice and palliative care workers, there is some truth to the thinking that people can hold on till they’re ready to let go.

Dr. Toby Campbell, a thoracic medical oncologist in the Division of Hematology, Medical Oncology and Palliative Care at the University of Wisconsin School of Medicine and Public Health, told STAT News, “People in end-of-life care wouldn’t bat an eye if you asked if they think people can, to a certain degree, control those final moments. We’d all say, ‘Well, yeah. Sure.’ But it’s inexplicable.” Science might not have studied this phenomenon extensively nor arrived at one possible explanation, but there are some theories.

It could be related to a hormonal stimulus

Old lady being hugged nurse

What allows someone in the last stages of dying to prolong their life until some unfinished business is completed? Dr. Campbell thinks it could have something to do with a hormonal stimulus (via STAT News). People in the final stages of death “probably have some kind of hormonal stimulus that’s just a driver to keep them going. Then, when whatever event they were waiting for happens, the stimulus goes away, and there must be some kind of relaxing into it that then allows them to die.”

Charles F. von Gunten, a pioneer in the field of hospice and palliative medicine, agreed. “What people will do for one another in the name of love is extraordinary. I think of it as a gift when it happens,” he told The Washington Post.

However, there might be something else that happens that gives dying people a chance to enjoy what time they have left with loved ones before they die. Healthcare professionals call this “rallying” or “the surge,” as explained by licensed hospice nurse, Julie McFadden, who goes by the name Hospice Nurse Julie on YouTube. “A patient will look like they are actively dying or getting very close to death … And then suddenly, they perk up and they start acting like their old selves again. They may be hungry, eat, talk, laugh, joke around, be a little sassy with their family … They frequently do this and then pass away usually the next day.” Again, this isn’t understood well by healthcare workers but it does give loved ones a chance to say goodbye.

How to let go when death is near

Family visiting grandfather in hospital

Regardless of whether your loved one is holding on so they can spend more time with you or they are experiencing a surge in life just before dying, death is often something we aren’t prepared for. Some people may even experience what is known as “anticipatory grief” — feelings of loss even before their loved one has actually died.

What dying people want you to know, on the other hand, might change depending on their particular life situation; but there is a big possibility that there might be regrets, most of which might have to do with relationships.

The author of the book “Dying Well: Peace and Possibilities at the End of Life,” Dr. Ira Byock, seems to think that we can choose how we die. Byock, who’s a physician and advocate for palliative care, shared in his book that people who are about to die should take the time to say goodbye (via Help Guide). Sentiments like “I love you,” “I forgive you,” “Forgive me,” and “Thank you” are not overrated and should be prioritized between loved ones and the person who’s dying. For loved ones who are letting go, it might also be important to let your dying family member know that it’s alright for them to go and that you will be okay. It could offer immense relief to them when they need it most.

Complete Article HERE!