Hospices Increasingly Supplement Bereavement Care with Phone Apps

By Holly Vossel

Hospices are embracing digital memory sharing platforms that are emerging worldwide to help support patients and their families through the dying process. These evolving technologies have made it possible for families and friends to memorialize loved ones through videos, audio recordings and various other media forms.

Hospices are required by the U.S. Centers for Medicare & Medicaid Services (CMS) to offer bereavement care to patients’ families for 13 months after their loved one expires. Hospice social workers, chaplains and volunteers are often roles tying patient families to these services and related services such as memorials, funerals and death doulas. Many hospices extend their grief care beyond their patient populations and offer that same support into the community at large with bereavement camps, support groups and memorial services for those experiencing the loss of a loved one.

A rising number of providers are turning to smartphone and tablet apps to enhance their bereavement services.

“[The After Cloud application] came from a place of grief that we turned into positiveness,” said Darren Evans, founder of After Cloud, an app that recently launched in the United Kingdom, United States, Canada, New Zealand and South Africa. “It essentially gives people the ability to capture moments in any form and it’s designed specifically with end-of-life and palliative care in mind. People can capture real-time moments and publish them at a future date to families if they wish.”

After Cloud joined the digital memory sharing space among platforms with similar capabilities of uploading photos and documents, creating videos, recording audio messages and speech-to-text features for dictating letters. Intended to capture and share moments with loved ones, the technology could be beneficial for hospice providers looking to expand complimentary bereavement services for families of deceased patients and communities at large.

“We’ve had tons of conversations with hospice social workers about our memorialized websites and the biggest thing about them is that they really end up being a win all around because it makes things easier on the family,” said Alison Johnston, co-founder and CEO of Ever Loved, a funeral planning site that creates memorial websites for individuals approaching the end of life and their families. “Much like a digital cemetery a memorialized website is a place where you can come back and visit a person and you can connect with other people that care about them as well. Somebody can continue to live online and it represents who this person was, shares the impact they had with other people and helps others grieve and connect with one another.”

The digital memory sharing platforms also pose an opportunity to expand advance care planning discussions with a number of apps featuring capabilities to upload and share documents virtually with loved ones. Advance care directives, living wills, life insurance policies and funeral planning information are some examples of the documentation types.

“For their patients, it’s that you’ve made this part of their life as physically and emotionally at ease for them and their loved ones. We create a co-branded webpage, give them a code for patients, provide digital information leaflets and just make the platform easily accessible on smartphones, tablets and computers,” said Ian Dibb, founder and CEO of the U.K.-based Once I’ve Gone application. “They know their loved ones will hear them and have access to all the important documentation and plans needed when you’re gone. The platform is meant to be about people interacting with it to get all their affairs in order and also create a digital legacy.”

Hospices have increasingly leveraged technology to ramp up grief support, with younger generations impacting the technical scope of end-of-life care. As more tech savvy generations care for aging parents and eventually come to need end-of-life care themselves, the trend toward digital memory sharing and grief support is expected to continue.

“Over the last five to 10 years our audience has become so much more tech savvy and is looking to do more things digitally because it’s one of the ways that we can help ensure that somebody’s memory lives on forever, and that people can continue to feel connected to family members and friends after they pass,” Johnston told Hospice News.

Similar to hospice, a goal for digital platform providers is to break down misperceptions around death and the dying process and bring end of life to the forefront of global conversations.

“We’re all about normalizing the conversation of death and grief,” said chief technology officer of After Cloud, Antony Hawkes. “The core of the application is the concept of building up your memories in a moment through things like photos and videos that are saved in a kind of memory box shared with loved ones later through permission sharing. Their loved ones are accessing this content remotely as a pipeline to pull these loved ones together and allow them to share, comment and discuss the content. Bringing people together and reducing that stigma around death is such an interesting challenge.”

Complete Article HERE!

How do relationships change through the Alzheimer’s disease journey?

Changes do occur in many aspects of relationships between the affected person and his or her caregiver during the course of the disease. These changes, however, do not diminish a person’s need for love and affection.

The loss of companionship is perhaps the initial beginning of relationship changes. The caregiver, now assuming a caregiver role, misses the opportunities for intellectual conversation and misses that person who was a “sounding board” for any problems that arose or decisions that had to be made.

The person affected may have always taken care of the family’s finances, but as the disease progresses, the caregiver must learn to make all the decisions of financial and legal matters, which can be challenging and difficult for someone already overwhelmed. Some caregivers get help from a financial adviser to assist in these meticulous tasks and decisions.

Alzheimer’s disease affects the sexual relationship between partners, too. The affected person may exhibit hypersexuality, putting demands on the caregiver and, at times, be overly affectionate at the wrong time or place. On the other hand, interest in sex may wane or decrease, and the caregiver soon misses that loss of intimacy. Yet, there can be intimacy without sexual relations. Cuddling, dancing, enjoying moments together holding hands, gentle massages are all ways of experiencing intimacy and ways to satisfy the needs of both the affected person and the caregiver.

The caregiver should try to be honest with his or her feelings regarding these relationship changes and to find ways to express them, whether it be through talking with close friends or by joining a support group.

Relationships with family and friends sometimes change drastically. Often family and friends are intimidated or are uneasy around someone with Alzheimer’s. They don’t know how to communicate with them and may feel threatened by his or her behaviors.

The caregiver can become just as isolated as his or her loved one. The caregiver should contact family and friends and share the loved one’s condition, with tips on communicating and ways they can visit in a nonthreatening manner.

The caregiver should encourage visits with family and friends for the sake of their loved one and themselves.

Complete Article HERE!

Dramas discuss what makes a good death in the age of Covid

By Alex Spencer

The coronavirus pandemic has forced millions of us to come face to face with death in ways that we never imagined. Whether we’ve experienced personal losses, attended virtual funerals, or watched death tolls creeping up on the news, we are all confronting the pain of illness, death and grief and we’re having different kinds of conversation than we did before.

Researchers from the A Good Death? project at Cambridge University’s English faculty have teamed up with Menagerie Theatre Company to create three original audio plays, released online for free today (Wednesday) to help us to think and talk about this new reality. Written and recorded during lockdown by Menagerie actors, Seven Arguments with Grief, End of Life Care – A Ghost Story and A Look, A Wave are short 15-minute plays that provide glimpses into the thoughts and feelings of a bereaved mother and a hospital doctor, and reflect on the final farewell of the deathbed goodbye.

Written by Patrick Morris, co-artistic director of Menagerie, and inspired by the research of Dr Laura Davies into the history of writing about death, these plays don’t try to provide answers about how to handle what we’re all experiencing, in different ways, right now. What they do is capture personal stories and aim to be authentic to how hard life, death and loss can be.

Laura told the Cambridge Independent: “We have been running them since 2018 to improve conversations about death and dying using literature and the arts that means we run public events such as workshops for bereavement counsellors, people who work in palliative care, hospice workers and we use literature, museum objects and artworks to help people talk about death and dying.

“During the pandemic we built on an existing connection with Menagerie Theatre at the Cambridge Junction to think about how we could make some audio drama that people could listen to at home or on headphones that hopes, in a non-direct way, to help people to think about death and dying in a different way to the headlines of the death toll creeping up.

“We wanted people to think about what they believe and how they are feeling and what their experiences are. Right now we are all being forced to confront a reality that is universal but in a new way. Our ancestors would have been closer to death with it being more common for people to die in the home – child mortality rates were higher and plague and disease that couldn’t be controlled were more usual. We have been protected in the west from that sense that things are beyond our control and that we are quite vulnerable as human beings. You can’t avoid death and dying at the moment and many people are reporting feeling anxious about it, but of course you can’t hide.

“It’s important there’s a way to think about these ideas and listen to a story that can prompt reflections without increasing fear and anxiety. The work of literature and drama is to stimulate emotions,but with a bit of distance because you know it isn’t real. Our message is that death is part of life and that the way in which individuals experience life, death and loss is complicated and unique, andthat there is not a right or wrong way to grieve or a right or wrong way to live your own life knowing it will end.

“The more you talk about it doesn’t make it more likely to happen, but it can enhance the way you live.

“Even if there are elements of death and dying we can’t control, such as where and when and how we might die, it helps to have shared your wishes with your family and to have thought about what you might wish your legacy to be. They can help you to come to terms with it.”

A Good Death? includes workshops designed for practitioners, such as bereavement counsellors and hospice workers, along with public events, creative collaborations and online resources. The project also uses literature and the arts to open up new conversations about death, dying and bereavement.

Laura added: “One of the things emerging in terms of cultural impact is the experience of complicated grief that comes from a traumatic death. Early research points to the fact we are looking at long-term consequences for people’s mental health because they may have experienced not being able to be with a loved one at the end, or only being able to attend a funeral by Zoom. And missing out on those kinds of rituals makes it harder for people to grieve. Psychologists are looking at this cohort of bereaved people and the impact it will have on them.”

Menagerie is a new writing theatre company, resident at Cambridge Junction. It aims to develop and produce new plays which engage powerfully, imaginatively and critically with the contemporary world. Its co-artistic director Patrick explained: “There are so many books about the grieving process as if it’s some kind of logical process rather than something that’s actually faltering, that stalls, that destroys some people, but makes other people. I wanted to create a space for the real difficulties of grief.”

On the value of this collaboration, Laura added: “Working with Menagerie has given me a new perspective on my research into 18th century literature. These plays turn abstract and complex ideas into personal stories, showing new angles that I’ve not noticed before. And they capture brilliantly both how similar our struggles today are to those of the past, and how every person’s response to death or loss is unique.”

The plays can be listened to on the A Good Death? project website, good-death.english.cam.ac.uk/collab , where you can also watch interviews with the researchers, writer and actors.

Complete Article HERE!

Hospices Seek to Balance Technology with the Human Touch

Hospices nationwide have leveraged technological advances to improve workflows, referral communications and enhance patient care. While telehealth in particular has been vital for hospices to continue reaching vulnerable high-risk patient populations during the COVID-19 pandemic, providers must proceed with caution when it comes to technology and patient care. 

Prior to the pandemic, technology in the hospice industry was evolving, with systems such as predictive analytics, telemedicine, artificial intelligence and virtual reality gradually changing the end-of-life care landscape.

“We have obviously seen an increase in the use of telehealth, and the word of caution there is we want to make sure we learn from this pandemic and accelerate some of that move,” said Edo Banach, president and CEO of National Hospice and Palliative Care Organization (NHPCO) in a recent Netsmart webinar. “We have to make sure that we use technology appropriately, but not to replace the human touch that is the sweet spot of hospice and palliative care organizations.”

NHPCO has been among the advocates in the hospice and palliative spaces calling for regulatory reform as telehealth pushes forward during the coronavirus pandemic. In August the U.S. Centers for Medicare & Medicaid Services (CMS) announced that it would make permanent a number of the temporary flexibilities to expand telehealth that the agency implemented in response to the pandemic, though of rules extended that will affect hospices remains uncertain. Concerns have flooded both the hospice and palliative care fields as providers strain to navigate uncertain technological reimbursement opportunities ahead.

“Importantly, we have to make sure that hospices and palliative care programs are compensated for the technology,” Banach said. “They are nowhere near as compensated as hospitals and other institutions when it comes to technology. That’s something that needs to improve. It’s really going to be important for individuals to have access to the technology that they need to get care in the home and for the clinicians to similarly have that same access and support. This is going to include technology for the delivery of meals and for the delivery of pharmaceuticals, technology that enables vital signs to be taken, technology that allows individuals to stay connected. The investment there is really massive. Billions of dollars of investment have gone into interoperability and state changes.”

Investing deeper in technology comes with considerations of data analysis and relationship-building capabilities as hospices look ahead to a value-based payment environment. Enhancing data analysis will be key for hospices looking to demonstrate their value proposition to Medicare Advantage plans in anticipation of the hospice carve-in coming in 2021. Designed to improve continuity of care and increase coordination among providers, the ability to reach patients sooner through interdisciplinary partnerships is another potential benefit from expanded technology use.

“The most important thing is diversification. If there is an opportunity to provide person-centered interdisciplinary care under contract with different kinds of entities, that’s going to be really important for hospices to establish those relationships to acquire the technology that’s necessary to take risk and really to begin, or to continue to live, in this sort of new value-based world because at some point, it’s going to be all that’s left — for better or worse. It’s really important that if you’re not in that space, to get in that space and to diversify as much as possible. Those who do that will be quite successful,” Banach said.

Complete Article HERE!

Covid-19 makes us think about our mortality. Our brains aren’t designed for that.

By Emma Pattee

You probably remember where you were that day in March when you first realized that the novel coronavirus was something.

Maybe you were chatting with co-workers in the lunchroom. Maybe you were browsing the news on your phone, seeing pictures of health-care workers in full protective gear like astronauts, or of older people with their hands pressed against their bedroom windows as their grown children clustered outside. Maybe you went to the grocery store and saw all the bare shelves where toilet paper used to be.

I remember where I was: driving to the gym for a Mommy & Me boot camp.

I pulled up to a red light and locked eyes with my 6-month-old baby in the rearview mirror. I felt unsettled and scared. I had an inexplicable urge to go home, and also to call everyone I knew and check on them. Yet nothing had happened. I was safe, healthy and employed. I was (and still am) more likely to die of a car accident than of contracting covid-19. It would be months before the state I live in, Oregon, would have a significant number of cases.

That eerie uncomfortable feeling has been described as grief. As fear. Or anxiety. But Sheldon Solomon, a social psychologist and professor at Skidmore College, has a more robust explanation: It is the existential anxiety caused by reminders of our own mortality.

Simply put, to function as a conscious being, it’s imperative that you be in denial about your impending death. How else would you go about the mundane aspects of your daily life — cleaning the gutters, paying the bills, sitting in traffic — if you were constantly aware of the inevitability of your own death?

“You would be overwhelmed with potentially debilitating existential terror,” Solomon said.

The logical outcome is a kind of cognitive dissonance. You know all humans die, you know that you are human, and yet somehow you don’t believe that you yourself are going to die.

Solomon and two other psychologists, Jeff Greenberg, a professor at the University of Arizona, and Thomas Pyszczynski, a professor at the University of Colorado at Colorado Springs, have spent the past two decades researching the ways in which humans avoid thinking about mortality and how we behave when we are reminded of death.

Death avoidance isn’t simply a psychological theory either; a neurological study was published in 2019 about a mechanism in the brain that avoids awareness of a person’s own mortality and that categorizes death as something unfortunate that happens to other people.

In other words, we are wired to accept that death happens — just not to us.

It’s easier to keep this denial going when death is not a part of your life. The more that death and dying become part of your daily experience — getting rear-ended on the freeway, the death of a loved one, a scary test at the doctor’s office, perhaps a global pandemic — the harder it is to maintain that denial. Greenberg, a co-creator of the Terror Management Theory, said that, in their research, they have found a few predictable but different responses to death reminders: an urge to make yourself feel safe (in the world of the coronavirus, that would look like wearing a mask or washing your hands), complete denial (deciding the virus is part of a conspiracy theory, or reminding yourself that nobody you know is sick or that you are young and healthy) or distraction.

Solomon said he is not surprised that during the lockdown rates of shopping, drinking and TV watching have gone up.

“What we are seeing is literally the predictable result of pervasive reminders of death,” he said.

An Israeli study showed some participants a flier about death anxiety and others one about back pain. When subjects were then offered an alcoholic beverage, one-third of the death flier group bought alcohol vs. one-tenth of the back-pain group.

The coronavirus pandemic isn’t the first time we’ve been reminded of death. In the past decade, hundreds of thousands of people have died of diseases, natural disasters and terrorist attacks, and many have experienced the loss of a loved one.

What makes this instance so unique is that many of us are stuck at home, our comfortable routines disrupted and our go-to denial tools such as the gym or the bar are out of reach. For those of us who have temporarily or permanently lost employment, our ability to block out death reminders is further reduced.

“When you have to go into lockdown to protect yourself from the physical threat, it’s interfering with those things that day-to-day allow us to feel psychologically secure in our sense of value in the world,” Greenberg said.

“When people are being laid off, and hours are being cut, they can’t provide for themselves and their families, they can’t do the things they normally do,” he said. “They can’t go out and have their value socially validated by friends and colleagues, then there’s a threat to that psychological security as well as a threat to physical safety.”

Additionally, the solitude that comes from being stuck at home may cause more than just a nagging, uneasy feeling; it may actually cause the acute realization of our own deaths.

James Baillie, a professor of philosophy at the University of Portland, believes the mechanisms that prevent us from fully grasping that we are going to die can temporarily cease to function, causing us to suddenly confront our own mortality, a fact we know but rarely acknowledge. Baillie calls this phenomenon an existential shock.

“Unlike covid[-19], the fact of our mortal nature persists throughout our lives, and we can do nothing about it,” he said. “We virtually never think about it, and, when we do, we pay lip service to it.”

Existential shock is what happens when we truly realize that one day we will cease to exist and the world will go on without us. Baillie theorizes that this shock can be brought on by moments of contemplation or a change in our routine.

“For some people, being confronted firsthand with the reality of covid[-19] deaths may cause existential shock, just as narrowly avoiding an auto collision might shock one into existential shock,” he said. “For others, the radical disruption of their daily lives can bring it on.”

Baillie describes this experience as similar to a panic attack.

Whether you are experiencing existential shock or just ongoing death reminders, it doesn’t need to be a wholly negative thing. Greenberg said that death reminders don’t necessarily cause us to change our behavior, they simply intensify our preexisting beliefs and behaviors.

“You get the worst and the best when death thoughts are close to conscious,” Greenberg said. “People want to feel that they’re a lasting contributor to a meaningful world so they’re going to assert that.”

Solomon pointed out that lab studies had shown that some people become more humble and grateful when reminded of their mortality.

Even if we don’t want to think about it every day, the occasional reminder of our own mortality doesn’t have to cause us paralyzing anxiety, or send us running to Amazon with a credit card in one hand and a martini in the other.

Solomon suggested an alternative way of thinking about mortality: “I am an infinitesimal speck of carbon-based dust born in a time and place not of my choosing here for an incredible brief amount of time before my atoms are scattered back into the cosmos. That need not be a terrifying thought.”

Complete Article HERE!

Her father developed dementia.

She made a documentary — a surreal, hilarious one — about the end of his life

Kirsten Johnson directs a scene with her dad for the new documentary, “Dick Johnson Is Dead.”

By Andrew Joseph

When the documentary filmmaker Kirsten Johnson learned her dad had dementia, she decided to kill him herself. Over and over again.

The result is the new film “Dick Johnson Is Dead,” which is available on Netflix starting Friday. In it, Johnson combines staged enactments of her father dying in accidental ways (tumbling down the stairs or getting hit by a falling air conditioner) with scenes from their life navigating his memory loss, cognitive decline, and impending death.

The film is both incredibly moving and funny, an exploration of the coming grief and an act of preserving what it is that Johnson is so sad to be losing. The “deaths” are played for laughs — moments from which Dick Johnson is resurrected in defiance of the finality of death, but against the backdrop of a very real, irreversible progression toward that ultimate fate.

The film debuted earlier this year (before the pandemic fully arrived in the United States) at the Sundance Film Festival, where it received a special award for innovation in nonfiction storytelling.

Johnson this week spoke to STAT from New York about making the film. Below are excerpts from the conversation, lightly edited for clarity.

Before your dad developed dementia, your mom died from Alzheimer’s. Did your experience with your mom inform you making this film, or even make it possible for you to make it?

Completely, and in many ways. I was really just devastated by her Alzheimer’s. I kept not seeing it coming, the way in which Alzheimer’s gets worse and worse. I would think this is as bad as it can get, and it’d be like, oh no, it became worse. So I really went through that as a period of grieving, and then more grieving, and then more grieving.

My previous film, “Cameraperson,” is an inquiry into memory and going back into all this footage that I shot over 25 years of being a cameraperson. I became very interested in memory and how memory functions because of her Alzheimer’s, and then I became very interested in time and how time functions. And then I was relating that to cinema.

When you’re looking at a movie, you’re not looking at a memory. You’re experiencing something, and you’re often looking at a dead person, like you’re watching Buster Keaton. But Buster Keaton was dead before I ever watched one of his movies and yet his movies are totally alive. So what is that? And that’s how I set upon the idea of making this movie with my dad, as a way of being defiant toward dementia, being defiant toward death. Like I’m going to laugh this time, I’m not going to just do the veil of tears that I did last time.

You say in the film that at first, because of what your mom went through, that when you first started hearing about your dad’s memory and cognitive issues, you thought, “this isn’t happening again, no way,” which I think is what a lot of people feel initially. How did you go from that point of denial to accepting this to the point you could make a humorous film about it?

Sometimes compartmentalization serves people. It helps us function. Sometimes, though, denial and avoidance and silence just let festering things fester more.

I’m really interested in how humans cope with exposure at scale to very difficult things. My father was a psychiatrist. He spent 50 years treating people with a variety of mental illnesses, and he’s someone always looking for a joke. And I think that was one of the ways in which he coped with how much trauma he encountered. So I was trying to learn from his methodology, learn from my career, of how does this craft — whatever craft it is that we have, whether it’s our medical skills or our filmmaking skills — how do we work with our craft to transform pain and difficulty into curiosity, hope, laughter? Because I needed that.

At one point in the film, as part one of preparing for one these fantasy death sequences, your dad is in a casket, and you say seeing him breathing in there makes it less hard. The enactments of his death are generally slapstick and funny, but still, was taking on your dad’s death as your job difficult, even if it was in defiance? 

It definitely had plenty of difficult moments, and yet because my dad has dementia, I was not going to avoid the difficult moments. They’re already in the house, so like, OK, how do we engage with them? Seeing people who work in these stressed positions, who are caregivers of many forms, the people who are doing it with lightness, who are doing it with humor and acceptance of the absurdity or the obscenity of it, that often helps.

The other thing I’m really interested in is images, and how images imprint on our brains — the idea of the indelible image. As I worked over the years, I realized that what is often the unforgettable image is the impossible image. So if you think about the things that have like, “Whoa, I saw this and I can never unsee it,” it’s often seeing something like a body in a position it’s not supposed to be in, or a body in a position that is unfamiliar to you. And accidents and death and disease, they all do strange things to the body. It’s this idea of being haunted by an image. We really file certain things away as, “OK, this is exceptional.” So I deliberately wanted to play with that, and see what would happen if I created an image of my father, like the indelible image of my father lying at the bottom of the stairs, but then he can get back up and we can laugh about it.

In another moment in the film, you ask a woman whose husband had been a pathologist if that changed her relationship with death, just being in the vicinity of it. And so for you, how did making a film about the end of life and death change your relationship with death?

I’m increasingly interested in things I wasn’t interested in before. And I certainly think there’s a great probability that I will have dementia. And there’s a part of me that’s like, “Huh, I kind of can’t wait to see what it’s going to feel like.” I know so much about it from super close proximity, but I don’t know it from the inside. But I’m also like, “Please let me die another way.”

But the film is healing. It has given me a way to do this differently than I did with my mom.

The film was made before the pandemic, but with that, there’s just been so much death in the past nine months, and I wonder if making the film has shaped your thinking about the pandemic and how many people have died.

Like each of us in our own ways, I’m really struggling with how to wrap my brain around this. You know, a million deaths? I talk about the scale of things that people encounter during a lifetime when they’re a professional who really looks at death. Like, I did 225 Holocaust interviews, but I didn’t do 6 million Holocaust interviews, right? And there is a way in which the individual brain may not have the capacity to allow in global-scale pain, and yet that is what is being asked of us. It’s also being asked of us in terms of climate change.

I’m definitely overwhelmed. I’m also deeply interested in the fact that we are now sharing anticipatory grief. I feel like dementia introduced me to that concept. You know worse is coming so what do you do with that? And you know finality may be coming. What do you do with that? This concept of, we’re in the long middle of the pandemic right now, we don’t know when it ends — that’s a very uncomfortable place for humans.

You tell someone in the movie that we all carry parts of our parents in us. And then you ask what he carries of his parents. So I’ll just end by asking, what do you carry of your parents?

From my mother, I know that she keeps showing up. She keeps being here. She doesn’t go away, and I’m comforted by her presence. She had a great love of color and I’m sitting here looking at what I’m surrounded by, and there’s an explosion of color all around me. And I think, that’s my mom.

From my father, I have this wish to listen more and I have this desire to laugh more.

Complete Article HERE!

Hospice Workers Share What They Wish Everyone Knew About Death

By Emily Laurence

When Daniel Lynn tells people he’s a hospice volunteer, he says they usually respond by asking him a question: Why? American culture tends to be put off by anything related to death; it certainly isn’t a welcome topic at a party or around the dinner table. “People ask me why I would want to spend my time doing something so sad, but I find it incredibly rewarding and meaningful,” Lynn says.

Palliative care physician Christopher Kerr, MD, PhD, has gotten similar responses when he tells people about his occupation. Dr. Kerr started working in hospice care—a type of health care focusing on managing a terminally ill patient’s pain and symptoms, as well as their emotional and spiritual needs at the end of life—to supplement his income as a doctor. Up until that time, Dr. Kerr’s job only focused on one outcome—saving patient’s lives—so he admits that he wasn’t quite sure where he would fit into a health-care space where death was imminent. “When I first started, to be honest, I didn’t think there would be much for me to do,” he says. “As a doctor, you’re taught that death is the one thing to avoid.”

The years Dr. Kerr has worked in hospice care, treating thousands of people who are dying, have made him see the dying process in a whole new way. “Death is not a sad experience for everyone,” Dr. Kerr says. His book Death Is But a Dream shares stories of patients he has cared for in hospice, showing that dying is much more than suffering. It can be a time when many become emotionally awakened, and there can be levels of comfort and peace that can’t be explained by science.

This year, of course, death has been on our collective minds more than ever due to the pandemic. It’s devastating to lose a loved one—to COVID-19 or otherwise. But hospice workers offer special insight into what’s often overlooked when we talked about dying. And with their observations comes something we all collectively need right now: healing.

How relationships can change when death is imminent

Lynn became a hospice volunteer in 1985, after both his wife and father died of lung cancer. “My current wife and I are both hospice volunteers in Williamsburg, Virginia,” he says. “And we have two Bernese mountain dogs who work as therapy dogs with us in the hospitals and nursing homes.”

Lynn doesn’t deny that losing a loved one is extremely heartbreaking. “When my first wife was dying of lung cancer, I grieved deeply,” he says. Experiencing the need for comfort during this difficult time in his life was part of what inspired him to be there for others.

Just as people live in different ways, people die in different ways. But something Lynn has noticed in his work is that dying patients often prioritize relationships in a way they didn’t earlier in their lives. “Something I often see is that many people want to make amends and improve relationships that have been damaged,” he says. Family members who haven’t talked in years may start communicating regularly. Grudges are dismissed, replaced by forgiveness and peace.

Angela Shook works as a death doula, a trained professional who supports someone at the end of their life. She’s also seen how important relationships become at the end of life. “Many of the people I’ve worked with have a fear that they’ll be forgotten, so something we often do is a legacy project, which is a way of helping friends and family remember them [after they die],” she says. “One woman I worked with was known in her family as this amazing cook. Everyone loved her food. So for her legacy project, we made a cookbook of her recipes that all her children could have. And we used her old clothes to make an apron for her daughter. It was extremely meaningful to her, and also to them.” In these ways, a death doula can help make saying goodbye easier for both the dying and the living.

Experiencing comfort unexplained by science

While many people equate death with suffering, Dr. Kerr says something that has surprised him the most about working in hospice is the peaceful visions that often come in a person’s final hours. He says 88 percent of his hospice patients report seeing visions as they die. Often these visions—vividly real to the person experiencing them—are of people who have died before them, and they provide a great sense of comfort, peace, and even joy.

Dr. Kerr adds that dying children often see pets who have passed away. “Children don’t have the same language that we do to talk about death, but the visions they describe give them a sense that they are loved and that what is happening to them is okay,” Dr. Kerr says.

He cannot offer a scientific explanation for these phenomena. “There’s this assumption that people have these visions because their brains are changing, becoming deoxygenated, or they are medicated and confused, but that’s not the case,” he says. “We know that by looking at the brain; it’s not changing biologically or functionally. I think people are changing very much spiritually.”

“To me, visions like these show that we really don’t die alone. And there can be comfort and even joy in dying.” —Angela Shook, death doula

Shook says many of her clients have also had visions. She and Dr. Kerr say it’s something that happens regardless of religious or spiritual beliefs; even those who don’t believe in a higher power or an afterlife can experience visions. “I would estimate visions are part of about 90 percent of the deaths I’ve been apart of,” Shook says. “One 83-year-old woman I worked with had been feeling very agitated for the three days. But when I walked into her room one day, she had a peaceful smile on her face. I looked over at her and she was rocking her arms, as if she was holding a baby.” The patient died shortly after that, and Shook shared what she saw with the patient’s son. “He told me that his mom’s first daughter had been a stillborn and she had often said that she couldn’t wait to see her daughter in heaven one day,” Shook says. “To me, visions like these show that we really don’t die alone. And there can be comfort and even joy in dying.”

Not everyone, though, has happy visions. In his book, Dr. Kerr says his research has found that in 18 percent of his patients who have visions, they are more like nightmares. “There seems to be a correlation between people who have had very traumatic experiences in life or a lot of regret [and experiencing negative visions],” he says.

Of course, it would be unfair to paint everyone’s end of life experience as peaceful and uplifting. The truth is, death is sometimes accompanied by pain and suffering, both physical and emotional. “Often, people have a question of ‘why me?’” Lynn says, adding that some are angered by what’s happening to them. It seems death, like other stages of life, isn’t all good or bad. Still, few people talk about the moments of peace—and even joy—in the process, and that’s what Lynn, Shook, and Dr. Kerr hope to shed light on.

“Becoming a death doula and spending time with the dying has been the greatest, most beautiful gift of my life,” Shook says. “It’s strengthened my belief that there’s more beyond what we can see.”

What hospice care has looked like during COVID-19

Both Dr. Kerr and Shook say their jobs have changed tremendously during the pandemic, and have caused them to think even more about the importance of end-of-life care. “Our work in hospice and palliative care has become invaluable during the pandemic,” Dr. Kerr says. He adds that, for him, working during the pandemic has been a struggle as the way he works has changed tremendously. “Personally, I feel a bit lost,” he says. “My work is most meaningful when defined by direct interpersonal relationships with patients, families, and colleagues.” But as hospitals and care facilities tightly restrict visitors to reduce the spread of COVID-19, cultivating those relationships is extremely difficult.

Shook says she feels her work has become more vital than ever in helping loved ones find avenues of closure. “Many have lost loved ones and been unable to mourn at a service or traditional funeral because of social distancing restrictions,” she says. “It is so important to take the time to grieve and realize that grief looks different for everyone.” Since, for many, attending a funeral isn’t a possibility right now, it can make finding other ways to say goodbye—such as through a legacy project—especially meaningful right now.

“Those of us who work at the bedside of the dying can attest that patients, in the face of what may look to most like a lonely death, do experience love, meaning, and even grace.” —Christopher Kerr, MD, PhD

Shook says she has still been providing her services as a death doula virtually, as meeting in person with families is not currently possible. “Many facilities and hospices in which many doulas work have restrictions on visitors. During this time, doulas [like myself] have been offering virtual support through web conferencing, calls, letters, FaceTime, and more,” she says. “With so many being isolated, doulas are more important than ever and can still support the dying and their loved ones from a distance.”

Dr. Kerr says that many family members of his patients have expressed devastation and sadness at not being able to be physically present for their loved one’s final moments. He sympathizes with this sentiment, but offers up some words of comfort. “The dying process includes altering levels of alertness and progressively deeper sleep, and include vivid pre-death dreams,” he says. “[In their final days], the majority of patients see not tubes or monitors but the faces of predeceased loved ones. They revisit the memories of being held and cherished, the apotheosis of a life rather than its demise. They teach us that the best parts of having lived are never truly lost.”

This, he says, reveals something important about the dying process, whether it’s during a pandemic or not: “The totality of our human experience can never be defined by or reduced to its last moments,” he says. “Those of us who work at the bedside of the dying can attest that patients, in the face of what may look to most like a lonely death, do experience love, meaning, and even grace. The dying often experience a summation of their life’s best moments and they leave us feeling more connected than alone.”

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