Category: Death Education

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Does Medicare Cover Hospice?

The answer is yes, but you must qualify and use a Medicare-approved hospice provider.

By Kate Ashford

As you or a loved one nears the end of life due to a terminal illness, hospice care might be a consideration. Hospice is a type of care in which a team of specialized health care professionals make someone who is terminally ill as comfortable as possible during the time they have remaining.

Medicare does cover hospice, but you must meet specific requirements [1]:

  • The hospice provider must be Medicare-approved.
  • You must be certified terminally ill by a hospice doctor and your doctor (if you have one), meaning you’re expected to live six months or less.
  • The hospice care must be for comfort care, not because you’re trying to cure your condition.
  • You must sign a statement opting for hospice care over other Medicare benefits to treat your illness. (See an example of this statement here [2].) If you’re thinking about seeking treatment to cure your illness, talk to your doctor — you can stop hospice care at any point.

Hospice care through Medicare generally takes place in your home or a facility where you live, such as a nursing home.

What hospice care is covered?

Hospice care providers care for the “whole person,” meaning they help address physical, emotional, social and spiritual needs [3].

  • All items and services needed for pain relief and symptom management.
  • Medical, nursing and social services.
  • Drugs to manage pain.
  • Durable medical equipment for pain relief and managing symptoms.
  • Aide and homemaker services.
  • Other covered services needed to manage pain and additional symptoms, and spiritual and grief counseling for you and family members.

In addition to you and your family members, your hospice care team may include some or all of the following:

You’ll also have the option of a hospice nurse and doctor who are on-call 24/7, for the sole purpose of giving your family support.

What will it cost?

Under Original Medicare, there are no costs for hospice care, although you’ll still pay any Medicare Part A and Medicare Part B premiums.

You’ll pay a copayment of up to $5 for each prescription for outpatient drugs to manage pain and symptoms. You may also pay 5% of the Medicare-approved amount for inpatient respite care — this is care you get in a Medicare-approved facility so your day-to-day caregiver can rest.

What isn’t covered?

Once your hospice benefit has begun, Medicare will not cover any of the following:

  • Curative treatment: Any treatment meant to cure your terminal illness or any related conditions.
  • Curative drugs: Prescription drugs meant to cure your condition.
  • Care from a hospice provider that wasn’t arranged by your hospice medical team. Once you have a hospice provider, you must get care arranged by them. You can still see your primary doctor or nurse practitioner if you’ve picked them to be the attending medical professional that helps manage your care.
  • Room and board: If you’re at home or you live in a nursing home or hospice inpatient facility, Medicare will not cover room and board. If your hospice team decides you need a short inpatient or respite care stay, Medicare will cover the costs, although you may owe a small copayment.
  • Care received as a hospital outpatient (such as in an ER), as a hospital inpatient or ambulance transport. However, Medicare will cover these services if they’re arranged by your hospice team or they’re not related to your terminal illness.

Starting hospice care

If you have Medicare Advantage, your plan can help you find a local hospice provider.

The hospice benefit is meant to allow you and your family to stay together at home unless you require care at an inpatient facility. If you need inpatient care at a hospital, the arrangements must be made by your hospice provider — otherwise you might be responsible for the costs of your hospital stay [4].

How long can you get hospice care?

If you’ve been in hospice for six months, you can continue to receive hospice care, provided the hospice medical director or hospice doctor reconfirms your terminal illness at a face-to-face meeting.

If you have other health issues that aren’t related to your terminal illness, Medicare will continue to pay for covered benefits, but generally, hospice focuses on comfort care.

Under your hospice benefit, you’re covered for hospice care for two 90-day benefit periods followed by an unlimited number of 60-day benefit periods. At the start of every benefit period after the first, you must be recertified as terminally ill.

What if you’re in a Medicare Advantage plan?

Once your hospice benefit begins, everything you need will be covered by Original Medicare, even if you decide to stay in your Medicare Advantage plan or another Medicare health plan. (You do have to continue paying the premiums.)

If you remain a member of a Medicare Advantage plan, you can use the plan’s network for services that aren’t related to your terminal illness, or you can use other Medicare providers. Your costs will depend on the plan and how you follow the plan’s rules.

Nerdy tip: If you start hospice care after Oct. 1, 2020, you can request a list of items, services and drugs from your hospice provider that they’ve classified as unrelated to your terminal illness and related conditions, including the reasons behind their inclusion on the list. (Find an example of this kind of statement here.)

Can you stop hospice care?

If your condition gets better or goes into remission, you may wish to end hospice care. You can stop hospice care at any point, but you must make it official: You’ll need to sign a form that states the date your care will stop.

Note that you should sign a form of this kind only if you are ending hospice — there are no forms with an end date when you start hospice care.

If you were in a Medicare Advantage plan, you’ll still be a member of that plan after you end hospice and are eligible for coverage from the plan. If you’re a member of Original Medicare, you can continue with Medicare after you end hospice care.

If you have additional questions about your Medicare coverage, visit Medicare.gov or call 1-800-MEDICARE (800-633-4227, TTY: 877-486-2048).

Works cited

Complete Article ↪HERE↩!

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Helping Children Cope with Death

By Christine Carter

Not so long ago, a sweet child in my community—my kids’ buddy from preschool—was killed in an accident. For a full year, I descended into dark periods of deep grief. Fortunately, I also often rose to the occasion, cooking for their family and standing strong for mine. The kids describe that year as “the time when mommy cried a lot.” The horror and disbelief and deep loss when a child dies are truly unimaginable, truly indescribable.

There are a lot of families in Berkeley who are probably in that hard place right now. Two weeks ago today, a kindergartener dear to the Berkeley campus was killed in a traffic accident. He would have been six yesterday.

It is hard enough as parents to deal with our own strong feelings when children die. But how in the world do we also help our children cope with their grief?

The grieving process itself is very different for kids than it is for adults. Because kids’ capacity for sustained intense emotion is limited, they may experience bouts of sadness and anger but then go off to play or immerse themselves in activities. This can be confusing to parents, who misread the child’s ability to play and laugh as an indication that either the child is no longer grieving or doesn’t understand what has occurred. Neither is true; the behavior is a defense mechanism that protects kids from becoming overwhelmed.

Depending on age, kids understand death to varying degrees.

  • Infants under 3 may notice an absence in their immediate world, but most likely do not understand the difference between a temporary and permanent absence.
  • Preschool kids usually see death as reversible, temporary, and impersonal. Their deceased loved ones might return, just as cartoon characters on television miraculously recover. Most kids under 5 do not realize that everyone, including themselves, will eventually die.
  • Kids between 5 and 9 begin to see death as final and to understand that all living things die, but many still believe that it may just be possible to escape through ingenuity.
  • By age 9 or 10, most kids understand that death is final, permanent, and inevitable.

Grief also usually lasts longer for kids: parents will need to revisit and readdress the loss at different points in the child’s life, especially during important events (like birthdays and graduations). Because kids often have difficulty articulating their feelings, grief can manifest in a variety of conflicting ways, including emotional shock or apparent lack of feeling, explosive anger, acting out behavior, fears of abandonment or death, immature behavior, or repeatedly asking the same questions.

Here are some more research-based ideas for helping kids cope with death:

Give them information. When asked what helps grieving kids most, Dr. Grace Christ from Columbia University says, “It is hard to overestimate the importance of giving children information at all stages.” Parents can help kids understand how and why a death occurred in simple, honest, age-appropriate terms.

Don’t tell half-truths. Saying things like “your uncle went on a trip” can prevent kids from developing effective coping strategies. Vague euphemisms (referring to death as “sleep” or “eternal rest”) are similarly problematic because they can be frightening and confusing.

Let kids talk about it. Repeatedly. Kids need to have opportunity to put their feelings into words. They may be anxious about the safety of other loved ones or themselves. Or they may be feeling guilty about times they weren’t nice to the deceased, or sad thinking about opportunities they missed to show affection. Kids will do better if they can express feelings like these to people who can provide the clarification and reassurance they need to heal. Encouraging other expressive outlets like drawing, painting and playing can also help.

Find ways to honor and remember the deceased. Research shows that instead of focusing on letting go and moving on, maintaining a link to the loved one can provide comfort and solace. The “continuing bonds” theory suggests we can move through grief by creating a new bond to the lost person. Activities might include putting together a memorial, gathering photos and creating a special album, or reliving memories together.

Read relevant books together. Books are often a wonderful way to help kids understand death. Kids may also project their feelings onto the story characters and engage in a dialogue in a non-threatening way.

Encourage death games. Kids will sometimes play “death games” in which they stage deaths, funerals, and other imaginative happenings. This type of game is a constructive way for kids to talk about death and work out anxieties in a relatively safe space.

Finally, we parents need to remember and honor our own need to grieve. I did better helping Fiona and Molly cope with our friend’s death once I had started to take care of myself and my own grief. I needed to allow myself (and my kids) some time away from our everyday activities to grieve and heal.

Grieving is an ongoing process, not an isolated event. My heart goes out to all those families who are in grief right now. If your family has dealt with a significant death, please help other families by adding your comments and suggestions (what are some good kid’s books for coping with death?) for how you healed below.

Complete Article ↪HERE↩!

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What a Hospice Physician Who Interviewed 1,400 Patients Can Tell Us About Dying

Visions and vivid dreams are end-of-life experiences that are seldom talked about. They often include reunions with deceased loved ones — and can provide dying patients with profound comfort.

By Alex Orlando

When hospice physician Christopher Kerr first started moonlighting at Hospice & Palliative Care Buffalo in 1999, hearing about the powerful dreams and visions that dying patients often had made him uneasy. But it didn’t take long for Kerr to realize that these inner experiences could be profoundly therapeutic — not just for the patients, but for their families, too. “They were undeniable,” says Kerr, now CEO of Hospice & Palliative Care Buffalo. “They couldn’t be ignored, and they had worth.”

To better understand these end-of-life experiences, or ELEs, Kerr has interviewed more than 1,400 dying patients. The stories he collected at their bedsides are featured in his 2020 book, Death Is But a Dream. They also informed seven published studies, tackling topics like post-traumatic growth and the ways that ELEs can help bereaved loved ones process their loss. In the days, weeks and even months leading to their deaths, Kerr and his team found that patients had visions of reunions with deceased relatives, dreams about travel and vivid memories of past experiences. More than 60 percent of the patients found them to be comforting.

Kerr hopped on a call with Discover to talk about the paradox of dying, how ELEs evolve as patients near the end of their lives and the ways that research like this can influence how we approach death as a society. (This interview has been edited for length and clarity.)

Q: What kinds of attitudes and perspectives do you see among patients who are nearing the end of their lives?

There’s a significant amount of misinterpretation from the outside. We have this natural, visceral response to the dying process, which is understandable, and actually critical to survival. And I think when we project ourselves onto that space, we think of the news of finding out that you have a terminal illness — that almost always comes as a true shock.

But what happens to people who are truly dying, after a protracted illness, is an entirely different level of acceptance. It comes from a number of things. Physically dying — being sick — is hard work; it’s exhausting. So there is this willingness to give into that process. And it tends to look after itself in ways that people don’t imagine. Our fear of pain, for example, is grossly overestimated. And the majority of people do find comfort and meaning in death.

Dying is this paradox where you’re physically declining, but spiritually, you’re very much alive. People who are having end-of-life experiences, who are the majority of people, are actually showing positive signs of growth, gaining insight and adapting right to the end. The point is that we view dying as this medical phenomenon when it’s ultimately just this human experience that is very rich. It’s more than organ failure. We’ve medicalized it and sterilized it to the point that it’s been dehumanized. There’s a much broader story.

Q: How do you define end-of-life experiences?

It’s really those subjective experiences at the end of life. Those inner experiences. The nomenclature gets really tricky because the only reference point we have is to call them dreams. But what’s interesting is that the patients themselves will say, “No, no, I don’t normally dream.” So they’re described as more unlike than like dreams, but that’s what we call them. We use the term visions in our studies because people say that they’re awake. But it’s not like we walk in and people are seeing things around the room. I think what’s happening is that they’re probably lucid dreaming.

There’s two commonalities to the dying process — you eat less and your sleep architecture has changed. So you’re in and out of sleep states. It may be that they’re lucid dreaming.

Q: Are patients lucid when they’re having these experiences?

First of all, these are IRB [International Review Board], university-approved studies and the consent process is pretty intense. There has to be a witness and you have to be aware of risk, ramifications, all those things. It’s a heavy document. The other thing is that we used this method called the CAM [Confusion Assessment Method], which is a clinical tool to rule out delirium. In the early piloting studies, we did labs, we looked at meds lists and we filmed a lot of people, so you could see that they were functional.

A very important distinction is that vantage point is everything; we’re not talking about the moments and hours before death, where you’re literally talking about a deoxygenated brain and altered states are more common. We’re talking about screening by days, weeks and even months before death. Some of these people are driving, doing their taxes and living alone. These people don’t have compromised neurologic functions. You can’t attribute it to neurotransmitter flux or anything like that. These are people who are highly functional.

What was really important was that we did this daily. Because we knew that there was a detectable change as people got closer to death. So what happened to the frequency? And what happened to the content? And the end story is that nearly 90 percent of people, within the days and weeks before death, have at least one of these events that are defined by being extraordinarily real and profoundly meaningful. They increase in frequency as people get nearer to death.

What’s interesting is that the subject changes; the content changes. The closer you get to death, the more likely you are to see people who are deceased and who you loved.

Q: Tell me more about these dreams and visions.

What seems to happen is that there’s this progression where people almost have an affirmation of having lived, and it lessens the fear of death. The stories are just remarkable. Even the negative ones are probably the most transformational or meaningful. Somebody, for example, had PTSD, in his end-of-life dreams he was comforted by seeing soldiers that he felt survivors’ guilt from. And then he could sleep. He found peace.

What was also fascinating was who was in the dreams. And, far and away, it was the people who loved or secured us best; who loved us unconditionally. You could be 95 years old, but it could be your mother’s voice from when you were five that you’re hearing. It’s really quite profound.

Q: What differences did you find from patient to patient? People tended to die as they lived. If you had tortured, distressed, tragic elements to your life, these processes didn’t deny that. And they don’t deny death; they almost transcend it.

I’ll give you an example: A mother who had a child who had addiction issues and ended up in prison. Her identity as a mother was questioned by herself. In her end-of-life experience, her parents came to her and told her she was a good mother. And a guy who lost his arm in childhood was wondering how he was going to be and live autonomously. He ends up working and people who he worked with came to him during his end-of-life experience and told him that he was the best at what he did.

There’s variance in as much as it’s individualized to that person. There’s certainly no one-size-fits-all.

Q: You published a study on ELEs and post-traumatic growth. What does trauma look like for people who are dying?

It’s based on the presupposition that dying is an adverse event. And even if you are accepting of dying, there is adversity, obviously, in the form of loss and anticipatory grief and pain. I don’t think the analogy is wrong to talk about it traumatically. But then the question is whether there’s value in something that is, by definition, negative.

We sorted people who were having end-of-life experiences from people who were not. And the people who were having these experiences showed statistically significant gains in overall growth, particularly in insight and adaptation.

It really inverts our idea of dying, which is this idea of a lessening. Which is clearly what we experience as observers — we’re seeing physical decline and change. But what we don’t see is the experiential piece, which is going in the other direction. The fact that we were able to show that these experiences led to growth, right up until the last days of life, I think is just really remarkable.

Q: Wow. For me, that’s really a new way to think about death — that you’re growing, spiritually, while you’re physically declining.

It’s funny. Other cultures don’t look at it that way. I was contacted by a colleague, an Emmy-award winning filmmaker, and she’s working with indigenous people in the Amazon. And we’ve heard of this, anthropologically, but she said, ‘What you’re describing, these people have a whole language for.’ It’s a very common way for cultures and societies throughout history to maintain their ancestral ties. They experience death differently; they’re sad, but they’re not feeling like there’s this loss. It’s interesting. Q: How do these experiences impact caregivers and loved ones?

We have published two studies based on surveys and interviews with 750 bereaved family members. We looked at scales of grief, and it showed that what was good for the patient was good for their loved ones. People who had witnessed these very positive experiences absolutely transitioned through grief and loss differently. They had better remembrance of the event.

It makes sense. How we experience and visualize somebody leaving us absolutely impacts our ability to process that loss.

Q: Does this research change your perspective on how people can better care for — and relate to — loved ones who are dying?

Dying is inherently isolating. And we’ve dehumanized it in so many ways. Yet this serves as one mechanism by which we can humanize what is a very human experience. What this research does, I hope, is take dying from being viewed as organ failure to the closing of a life. We are so much more than failing parts. I think what’s important, on the caregiving side, is giving hospice patients the permission for these experiences to be expressed. And the bereaved are typically a part of that story, so it feels like people are brought together.

Q: Can knowing about these experiences help people who are in hospice prepare for death?

Yeah. And we’re seeing that. It’s interesting. People who live to their eighth decade have often observed this. So they go into the dying process with hopes of reunion. It’s remarkable. It really depends on their life experiences, but it absolutely informs how people face the end of their life.

Q: How can this kind of research inform how we approach death, culturally?

I think we need to reclaim it. I don’t think the solution is a medical one. Dying, generations ago, was a shared experience between a family or a town. That’s a healthier approach. And I think we’re seeing that in the baby boomer generation — we’ve really gone from death aversion to people wanting to have a say. You see death doulas; you see death cafes; and books on death sell.

As people are looking at their own mortality, and we are a consumer culture, people want ownership of it. They don’t want to be medicalized by the doctor. They want to have a say in their story.

Complete Article ↪HERE↩!

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How Losing a Pet Can Make You Stronger

The process of acceptance and letting go builds the resilience necessary to navigate an array of life’s obstacles.

By Kerry Hannon

It’s been three months, and I still fight back tears when I’m reminded of the death of my Labrador retriever, Zena. The haunting image of finding her lying on the kitchen floor flashes back: her jaw clenched, eyes open and body lifeless but warm.

She was nearly 13, but there were no signs she was in distress when I left her 20 minutes earlier. Yet she was gone. I felt as if I let her down in some way. I wasn’t there for her.

When Zena was just a few months old, she curled up on the bed with my 88-year-old father, as I held his hand, and he softly exhaled his last breath. My younger brother, Jack, died unexpectedly three years ago. I clung to Zena for comfort.

My first experience with death was losing my turtles, Charlie and Tina, at 6. I’ve since lost friends, relatives, other dogs, cats, horses. Decades later, Zena’s death has sharply reminded me how aching grief is.

Our pets are a part of the everyday fabric of our lives in a way that few human relationships are. When you lose one that is close to you, something inside shifts.

Smarter Living: A weekly roundup of the best advice from The Times on living a better, smarter, more fulfilling life.

And yet the death of a family pet can remind us of how vulnerable, precarious and precious life is. It’s that process of acceptance and letting go that builds the resilience necessary to navigate an array of life’s obstacles. We hone an ability to adapt to the evanescence of our lives with grace and hope.

“We’re changed and transformed by the loss,” said Leigh Chethik, a clinical psychologist in Chicago. “It brings impermanence and death into an updated internal, emotional map. This loss can help us with whatever comes next, whatever future losses may be in store. We come to see that we can create a new understanding and attach to new dreams.” Below are some ways in which the loss of a beloved pet can be a catalyst for personal growth.

Embracing Your Loss

“The idea that grief can often be the price of love is helpful in developing resilience,” according to Jessica Harvey, a psychotherapist in Portland, Ore., who specializes in pet grief. “By focusing on the positive elements of having a pet as the cause of why the hurt is so powerful when they are gone, we can begin to heal.”

Pets occupy a unique role in our lives. “They are usually our ‘roommates,’ part of the household, and they are typically a source of pure warmth and positive experience,” Ms. Harvey said. “How we are able to manage the temporary reduction of joy and warmth from the missing roommate can be a significant practice in resilience.”

That loss, of course, can have a startling depth. “For adults in their upper-20s to mid-30s it’s like losing their innocence as a new adult and being catapulted into reality,” said Dani McVety, a veterinarian and a founder of Lap of Love Veterinary Hospice, a national network of veterinarians dedicated solely to end of life care. “Many times, people in this age range got their dog or cat at the very beginning of their adulthood. This pet has witnessed them go through college, boyfriends or girlfriends, marriage, children, career developments, and so on. This pet has been the one constant in their life through their biggest growth years.”

How we handle the death of a pet “shapes how we deal with love and loss, conjoined emotions,” said Kaleel Sakakeeny, a pet loss and bereavement counselor who is based in Boston.

From Grief, Building Confidence

But how does that growth happen? One study, “Post-Traumatic Growth Following the Loss of a Pet,” conducted by Wendy Packman and others, of the Pacific Graduate School of Psychology at Palo Alto University, found that after losing a beloved pet, many of the participants reported an improved ability to relate to others and feel empathy for their problems, an enhanced sense of personal strength, and a greater appreciation of life.

Lynn Harrington, who lives in The Plains, Va., lost her 15-year-old Norwich terrier, Hap, about a year ago. “For many months, I couldn’t shake the sadness,” Ms. Harrington said. “And during these sad times, I finally remembered a lesson I learned many years ago with the loss of my first dog: Animals that come into our lives are gifts to us and can never be replaced. However, another animal can come to us and help us heal our hearts.”

Shortly after that epiphany, a friend told her about a senior dog that needed a home, and a match was made. “There isn’t a day that I don’t think of Hap through a photo, a memory shared, or even some funny mannerism I see of him in my rescue dog,” Ms. Harrington said. “These moments remind me that I’m grateful for the animals in my life — they teach me about love and that I’m resilient even in times of great challenge or sadness.”

Remembrance itself — though photos and memorials — can be healing. “Grief is ongoing,” Ms. Packman said. “Remaining connected to your beloved pet after death can facilitate the bereaved’s ability to cope with loss and the accompanying changes in their lives. Our findings suggest that those who derive comfort from continuing bonds — holding onto possessions and creating memorials for their pet — may be more likely to experience post-traumatic growth.”

Life Lessons for Children …

For children, the loss of a pet can be “a dress rehearsal for losing a human family member,” Dr. Chethik said. “With the death of a pet, kids are often exposed to a new existential crisis or struggle: the idea of impermanence and mortality. Things we love and care for are not around forever. We can and will lose what and who we love. And we can’t go where we may typically go for comfort — to our pet.”

For children, this process can be hard to grasp. The death of a family pet can trigger a sense of grief in children that is deep and lingering and that can possibly lead to subsequent mental health issues, according to a new study by researchers at Massachusetts General Hospital.

“The impact can be traumatic,” wrote Katherine Crawford, the lead author of the paper. “We found this experience of pet death is often associated with elevated mental health symptoms in children, and that parents and physicians need to recognize and take those symptoms seriously, not simply brush them off.”

Dr. Chethik added: “A child needs to actively grieve and process the loss,” he said. “The attention, support, honesty, sharing and understanding the child receives during this time of grief will them create an emotional template for the human losses that will inevitably come their way.”

With support from parents and others, the loss of a pet can be a way for children to move forward. “Teaching children how to say goodbye and that the difficult emotions that accompany grief are OK to feel is a powerful lesson,” Ms. Harvey said. “Children learn that this painful experience does start to feel better eventually, and that other difficult situations in the future can as well.”

… And for Adults

I’ve reminded myself these past months not to rush the process. Grief slides from the heart in its own time. I’m still talking to Zena and reflexively looking for her when I wake up in the morning. Yet, I know that soon my husband and I will be ready for a next chapter with a new companion.

This is the second dog we’ve lost during our marriage. We’ve grappled with the sadness each time, but we both know from experience that the love and laughter a pet brings into our lives are worth it.

As Ms. Harrington said, “Just knowing I can move through that kind of pain and get to the other side really does translate into that lesson that even when things in other parts of my life seem dark, I just need to keep moving through it and the unexpected can happen, bringing joy or opportunity.”

Complete Article ↪HERE↩!

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How to Bring More Meaning to Dying

Palliative care specialist BJ Miller and Shoshana Berger explain how to bring more meaning and less suffering to the end of life.

By BJ Miller, Shoshana Berger

Most of us don’t like to talk about our own death. And when we refer to other people’s deaths, we often say things like “Her health is failing” or “He failed treatment.” These common sentiments make it sound like death is an option or that we can prevent it somehow—if only we ate more kale or walked 10,000 steps a day.

But guess what? Death isn’t optional.

Death is as much a part of our life as birth. And, just like a birth, it goes better when we are prepared for it. Not that we can control all outcomes or make it pain-free—but there is a lot we can do to help make it easier and more meaningful.

In our new book, A Beginner’s Guide to the End, we talk about all of the ways people can prepare themselves and their family members for the inevitable. Some of our book focuses on basic practicalities—like how to talk to doctors if you have a chronic illness, how to make treatment decisions, what documents to have in place for your end-of-life care, and how to create wills and trusts. We try to provide a comprehensive list of resources and detailed advice about how to manage this part of dying.

But, while many people think to prepare for the practical aspects of dying, too often they give short shrift to the emotional side of dying—meaning, what to do so that your death has more meaning and is less emotionally trying for yourself and those left behind.

There are many ways that you can improve the experience of dying if you plan for it and communicate your wishes to your loved ones. Here are some of the ideas we recommend in our book.

Don’t leave a mess

Many people don’t realize that the stuff they’ve been saving may not be of much value to those they leave behind. Therefore, it’s important to take time while you are still alive to clean out those closets and attics. Doing a big purge serves a dual purpose: It will make you feel lighter and also lighten the load on loved ones when you’re not around to help sort through your belongings.

It’s important to ask yourself why you’re keeping so much stuff. It is because you still use it and it brings you pleasure? Or does keeping it push away thoughts of dying? Or are you overwhelmed by the task of going through it all?

It can be cathartic to set aside time to go through your possessions, reflecting on what they mean to you, then letting them go. In some cases, you may want to save family heirlooms that have special value and make a plan to talk to your heirs about keeping them after you die. But it will have more meaning for them if you explain why you’d like them to have the item and what it means to you.

Clean out your emotional attic

Cleaning out your emotional attic is important, too. This may include sharing old secrets that you have kept from loved ones that are likely to be discovered after your death. Especially in this age of popular DNA testing, it’s important not to leave important things unsaid, though it requires sensitivity in the delivery.

If your secrets are just too damaging to reveal, consider enlisting someone to “scrub down” your life after you die. This can be a close friend who goes through your medicine cabinet, electronic files, and nightstand to rid them of old medications, personal diaries, sex toys, and other unmentionables. If you are happier knowing that these parts of your personal life won’t be exposed after you’re gone, we are not here to shame you! Just take care to make it a choice.

Mend important relationships

When people die, they don’t regret not having worked harder; they regret not having worked on their relationships. It’s important to mend old wounds before it’s too late. Even if you meet resistance from loved ones, keep pushing for more conversations, making sure you say what you want to say to them now.

In Ira Byock’s book, The Four Things That Matter Most, the pioneering palliative care physician talks about what most people long to hear that can help mend even long-fractured relationships:

Please forgive me.
I forgive you.
Thank you.
I love you.

Why these four phrases? True apologies and forgiveness, while helpful to consider at any stage of life, can go a long way toward making someone’s death more peaceful. Gratitude and love are what most people tend to need at the end of life. Closure is a human construct, rather than an act of nature, and a very useful one at that. This framework offers a recipe.

When we asked Dr. Byock if he would add anything to this list, 14 years after publishing that book, he said, “It’s useful for a parent to say to their child, ‘I’m so proud to be your mother, I’m proud to be your father.’” He’s met many men in their 60s who still yearn to hear that from a father who’s long gone.

Leave a mark

Legacy can be a loaded word. But most dying people want to know they mattered in some way, and they want to leave a mark. While for some this will mean using assets to fund a scholarship or a trust for their kids, others will have fewer material—but no less valuable—things to leave behind.

In a survey of baby boomers, only 10 percent thought it “very important” to inherit financial assets from parents, while 77 percent said that receiving and providing “values and life lessons” is very important. This means that money is not the only thing of value you can leave behind, and you may want to start thinking about what you want to pass down.

Here are some ideas that we’ve found helpful to those who wonder what to leave.

1. Leave your story. Telling the story of your life and leaving a record of experiences, people, and ideas that mattered to you gives those who love you a feeling of continuity from one generation to the next.

While you may assume that no one will care, imagine this: What would it be like to have the story of your great-great-grandmother in your hands? Wouldn’t that be amazing?

If you’re still daunted by this idea, you may want to enlist the services of StoryCorps or StoryWorth—two organizations committed to helping people get their stories down. Or you could create a family tree, perhaps using Ancestry.com or the National Archives. Fun for you, important for those you leave behind, and research suggests doing so may help improve your and your caregiver’s well-being at the end of life.

2. Leave a letter. Writing a letter can be a good way to put into words things that may be difficult to say in person. You might want to express how much you love someone, how proud you are of them, what they mean to you, your hopes for their future. If you need help, you can look to services like Last[ing] Letters.

3. Leave an ethical will. An ethical will is a way of transferring immaterial things to your loved ones: your life lessons and values. It’s not a replacement for a regular will, but a complement to it, and research suggests it reduces your suffering by taking care of “unfinished business” and bringing a deeper sense of purpose to the life you still have.

An ethical will can explain why you made certain choices in your legal will—e.g., why you left your car to your youngest daughter instead of all of your children—or tell a story about where you came from and what you value. Barry Baines, a hospice medical director who wrote a book called Ethical Wills, found that 77 percent of his patients felt their emotional well-being improve and 85 percent felt their physical well-being improve after completing an ethical will.

Of course, there are many other ways people can make the experience of saying goodbye less fraught. Few folks will get to every last detail before the end comes; as ever, do the best with what you have, while you can, and forgive yourself and others the rest. By taking care of emotional needs and focusing on what you hope to leave behind, you can bring more meaning to the experience and ease the burden on loved ones in the process. In other words, bring the same dignity and care to death that you bring to life.

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On the ‘art’ of dying

— ‘If you want to die well, then first – live well’

Over the past 15 long months, the pernicious effects of a contagious microscopic pathogen have taught us a lot about the state of relationships in our world, in our families and communities.

By Sean O’Connor

If used as a kind of illuminating lens, to paraphrase the Ugandan priest Gideon Byamugisha when discussing what HIV and Aids can teach us, Covid-19 shows us where our relationships are weak and where they are strong, it shows us where they are corrupt or broken and where they need mending.

Power relationships and patterns of privilege have become especially visible. In this sense, Covid-19 has shone a light on the unequal ways that many of us live in relation to each other. It has also highlighted the “unnatural” ways that many people have died, behind closed doors, away from home and without their loved ones who are unable to say goodbye, complicating their bereavement. Our experience with Covid-19 has shone a light on the end of life, for many a light that has been obscured for a long time, through a combination of mainstream death denial and a prevailing feeling, perhaps, that to die means that you have somehow failed to stay alive – that death itself is antithetical to life.

Just as Covid has revealed some of the uglier sides of human nature, with predictable fear and distrust and a swirl of conspiracy and corruption, so too in many places has it highlighted our resilience and compassion, and our status as social animals who need each other not just for survival but for our mental and spiritual wellbeing.

I feel that it has taught us to value those we love for death can take them at any time, just as it always could, just as it has taken so many. (Multiply the number of global dead by five or six to get an index of active grief visited upon the world right now. That is a true index of suffering, I believe, and not the bald statistics of lives lost.)

For many millions grieving, their grief has been attenuated, disrupted, titrated into what is permissible and what is not under lockdown regulations. For millions and millions of people, this experience of loss has caused us to look at death more closely and invited us to consider how we ourselves might wish to die one day. For the privileged, Covid-19 may have slowed things down, and for those who can afford to ask the question, invited people to ask what they want from life, beyond the task of mere survival.

The lens provided by Covid-19 has also brought into focus this nascent idea of having “a good death”, whatever that means. It is this idea, which is both absolutely necessary and deeply flawed, I believe, that holds the possibility of heralding a healthy interrogation of mortality and what it means to cherish life, and what it means to fear death, too.

But it also romanticises death and encourages us to feel that we can expire on our terms, which is mostly not the case. It’s not about the elegant fluttering of a white handkerchief and aptly chosen final words. Just like birth, which can also be beautiful, I happily concede, I suspect that death is usually a bit of a messy struggle, and like birth, more associated with bodily fluids and end of pain.

Still, “what is a good death, and how could you increase your chances of having one?” was a popular discussion point at the Death Cafes I gained so much from attending. I liked to say my father had one – quick, and in a place he loved, after saying he was ready to go and had enjoyed a wonderful life. He was 67. Some people pulled in their breath when they heard that. Certainly, I’ve heard of painful deaths, drawn-out deaths, and others – sad deaths, horrible deaths, and deaths that are extremely difficult for the living, or the dying, to accept.

How are we to die? Do we have any choice in the matter? This question is animating legislators and activists locally and abroad, as they revisit laws to compass or deny the quite reasonable, in my opinion, perspectives of the “right to die with dignity” movement. At present, it seems that many governments around the world, ours included, simply do not trust their subjects to make the informed choices that are in their best interests. For now, however, I will skirt this rather vexed issue and instead indulge in a quick survey of available resources on this idea of a “good death”, and for this, invite you back quite some way.

Ars moriendi (The Art of Dying) was originally published in Latin as two related texts, a longer and a shorter, in around 1415 and 1450, and gave advice on how to “die well” according to Medieval Christian precepts. It appeared in more than 100 editions in most Western European languages. It’s an early example of “death lit”, traceable back from the present, a genre that seems to be having a bit of a moment right now with personal accounts of loss and reflections on mortality high on the bestseller lists – Atul Gawande’s Being Mortal being the most obvious (and excellent) example.

Originally written by an unknown Dominican friar in the aftermath of the Black Death (which halved Europe’s population), and within the profound social, religious and political upheaval of the Middle Ages, the Ars moriendi might be seen as evidence of a shift in the way people experienced and understood death. No doubt this genre is set to explode, given our collective experience of grief in these times.

The Ars moriendi were recently updated, signalling another shift. The Catholic Church has done so to “assist terminally ill people and their loved ones deal with death”, according to this article in The Guardian. The Art of Dying Well website includes animations with a voiceover by Vanessa Redgrave, who is said to have had a stiff brush with mortality and a wish to die after health complications. A slew of other books and articles entitled The Art of Dying clog the digital ether.

Is dying really an art then?

I guess it depends on what you think art is. Perhaps the simplest definition involves the idea of “skill” in grasping the world, and that whatever art is, it’s quintessentially human. As a reflection of human experience then it is subject to notions of value, as good or bad, worthwhile or not. So, can dying be an art? Can it be skillful, if it is so utterly happenstance and beyond our control, and also so banal – so normal – that every single one of us does it?

Implicit in these and other more conventional understandings of death, however, as well as this idea of a “good death” and dying as an “art”, is the veiled assumption that death is some sort of final performance. In one sense only is this true. But death is not just an occurrence, I think.

Certainly, the idea of a “good death” has gained in mainstream popularity and become widely aspired to. It was a feature article in a recent issue of Fair Lady magazine. This I understand as a natural backlash to a prevailing culture of death denial, of avoiding death at any costs, which is shifting, as people everywhere tire of the false and dehumanising promises of the consumer capitalism and recoil at the same time from the scientific tendency for overmedicalisation (is that a Scrabble word?) at the end of life. Still, in our own peri-Western culture, suffused as it is with a plurality of local African and other belief structures, death remains very much a taboo and what my friend Peter Fox calls “an unwelcome visitor”.

In a useful little online essay, “The Dangerous Myth of a Good Death”, blogger and nurse Kathleen Clohessy quotes from Frank Ostaseski’s lovely treatise, The Five Invitations: What Death Can Teach us about Living Fully. He says: “We treasure the romantic hope that when people pass away, everything will be tied up neatly. All problems will have been resolved, and they will be utterly at peace. But this happens rarely. Very few people walk toward the immense challenge of dying and find peace and beauty there… who are we to say how another should die?”

I think this is the risk inherent in ideas of a “good death” – that it’s up to the dying person to do it well, or not, imposing some kind of value judgement on it. Think of all those people you’ve met, bleating “but oh, I’m not creative at all!” now being informed that their dying was meant to be done with artful skill, done well. Wasn’t school hard enough, relationships, and all the rest? Now we must excel at death too?

Clohessy writes: “Placing expectations on the dying is an easy mistake to make. But when we do so, we limit our ability to open our hearts to what is happening and be truly present with the person who is making the journey in the here and now… When we impose our beliefs about what death ‘should’ look like on someone who is dying, we deny them unconditional love and acceptance they need and deserve.”

So, calling death an art may well make things more difficult. This is not to say one should not prepare for death – by all and every means, prepare for the inevitable by talking about it and doing what you can to make it easier for you and your loved ones. Complete your advanced-care directive and fill in your organ donor card, update your will and try to find peace. Speculate about your death with the people you love no matter how hard that might be and let them know how you wish to be disposed of and how to be remembered.

Perhaps it’s simply about doing death better. The “death positive” movement, with the redoubtable Caitlin Doughty, possibly the world’s most popular mortician as its high priestess, is a growing community that has some really useful things to say about this in a manifesto of sorts on its website. The Order of The Good Death, which she co-founded, has a mission to “make death a part of your life”.

Implicit in these and other more conventional understandings of death, however, as well as this idea of a “good death” and dying as an “art”, is the veiled assumption that death is some sort of final performance. In one sense only is this true. But death is not just an occurrence, I think.

Instead of seeing it as “the end”, my discovery, which is hardly unique, is that consciousness of it provides the means to live a full life. Without wishing to intrude on the province of the suffering, I understand that I am already dying, and that every day death is with me. It is in every cell of skin that falls from me, in each expiring blood cell that perishes within. I’m slowly dying, inside and out. Death surrounds me and I am in it and with it, as much as I am alive and in life too. It is in the grief of my friends, in my own grief, too. In my own dying I find my vitality. Death sharpens my appreciation of life.

So it’s a lifelong process, this dying shtick, kicked off at the moment of birth. Carl Jung reminds us that “life is a short pause between two great mysteries. Beware of those who offer answers.” Perhaps it’s a voracious scientific urge towards a complete system of knowledge that wants to dominate this unknown province, this final mystery – in fact, to cheat it, to perhaps even bypass it entirely – the next big tech “disruption”.

Gimme a break! I do well to remember that death is a mystery and something that mystifies. It’s also easy to theorise and extrapolate upon. Until it happens to oneself.

Consideration of death immediately brings life into focus. But a good death? An artful expiration? If you really must have one, then, to paraphrase Dr Kathryn Mannix, a palliative care doctor and author, if you want to die well, then first – live well.

That’s about as much as one can do, I think.

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End-of-life care: people should have the option of general anaesthesia as they die

By and

Dying patients who are in pain are usually given an analgesic, such as morphine, to ease their final hours and days. And if an analgesic isn’t enough, they can be given a sedative – something to make them more relaxed and less distressed at the end of life. We have recently written about a third approach: using a general anaesthetic to ensure that the dying patient is completely unconscious. This has been described previously, but largely overlooked.

There are two situations when a general anaesthetic might be used in dying patients. The first is when other drugs have not worked and the patient is still distressed or in pain. The second is when a patient has only a short time to live and expresses a clear wish to be unconscious. Some dying patients just want to sleep.

But what type of anaesthesia are we talking about? If you need surgery or a medical procedure, there are three options. First, being fully awake, but having local anaesthesia to block the pain. Second, you could be partly sedated: you would be less stressed or worried about it, but you might remember some of the procedure afterwards. Finally, you could have a general anaesthetic and be out cold, with no memory of the procedure afterwards.

Any of these might be appropriate, depending on the procedure and depending on the person. But the option with the highest chance that you won’t feel anything is, of course, general anaesthesia.

These same three options could be offered to a dying patient. Some people might want to be as awake as possible. (Like the poet Dylan Thomas, they might not wish to “go gentle into that good night”.) Some might want to be sedated, if necessary. Others might want to be completely asleep.

The choice of general anaesthesia at the end of life is potentially popular. Last year, we surveyed more than 500 people in the UK about end-of-life options. Nearly 90% said they would like the option of a general anaesthetic if they were dying.

You might wonder, is this not just euthanasia by another name? Giving someone medicines to ensure that they are unconscious as they die naturally is different from giving someone medicine to end their life. General anaesthesia is legal, whereas in many countries, including the UK, euthanasia is illegal. This means that the option of anaesthesia could be available now for dying patients in the UK without changing the law. France has recently recognised the right for dying patients to be unconscious.

Wouldn’t it be too risky?

There are side-effects with all medicines, but recent advances mean that it is possible to give anaesthetic medicines to patients close to death without affecting their breathing. The medicine is given slowly, and the patient made unconscious gradually over 15 to 20 minutes. The medicine can be slowed or stopped at any point.

Tray of anaesthetic drugs.
Tray of anaesthetic drugs.

Previous studies that have used anaesthesia at the end of life, have continued the medicines for one to 14 days until the patient died naturally.

This will not be for everyone. It may not be possible for those who are dying in their own home. And some people will not want it. But we have the means to offer dying patients a gentle alternative end to their days. We believe that there is a strong ethical case to make the option of general anaesthesia at the end of life more widely available.

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