The deaths that changed my life

A palliative care specialist reveals what she’s learnt

[W]ith two decades of experience in helping people approach their final days in the best way possible, Adrienne Betteley shares her most touching and disturbing moments

 
First as a nurse, and then working with Macmillan Cancer Support, I have spent nearly 20 years helping people during the final months of their lives – and making sure that as many as possible have a “good” death is a great privilege.

If my experience of end-of-life care has taught me anything, it’s that there is indeed such a thing as dying “well”. Of course, the way we die varies depending on the cause of death, as well as the individual needs of the person, but there is also a tragic variation in the care and choice that people have as they approach their end.

At Macmillan, we believe the first step in achieving a “good” death is talking about it more – as we set out in our recent report, No Regrets. We looked at the taboo around discussing death, and how planning ahead can help people to die in a place of their choice and to have more control over their treatment.

So, in the spirit of talking more, and being honest, I’m sharing some of my experiences. I hope that it inspires others to do the same.

Dennis’ late wife, with her son (Adrienne’s husband) and grandchildren.

Closure is important

The first time I encountered death was when I was seven years old and living in Australia in the 1970s. My best friend, Stephen, died of leukaemia at the age of 11. He was the son of some close friends of my parents and was like a big brother to me. He was so kind-hearted, and I really looked up to him.

Death wasn’t seen as something children should know about, so I never visited him at hospital or went to his funeral. No one talked about Stephen dying, and I had recurring nightmares about it. I feel that I never had closure, and still think about it now sometimes.

Adrienne Betteley

Don’t let fear stop you

When I was 25, and living in Cheshire, my maternal grandmother Eileen was diagnosed with oesophageal cancer. Her reaction to finding out she was dying was calm; she began talking about her memories and writing them down.

I was pregnant and my granny “held on” until my daughter, Jasmine, was born. I took my daughter to hospital to meet her great-grandmother, a few weeks before she was moved to a hospice.

The experience with Stephen had scarred me, and I didn’t visit her in the hospice. I was too afraid. I thought it would be like a Victorian sanatorium, with people wailing and crying out.

Years later, while I was a student nurse, I realised a hospice can be a place of joy and peace – somewhere to treasure the end of life, rather than focus on death.
I regretted that I had let fear stop me saying goodbye to someone I loved dearly.

Adrienne Betteley couldn’t face visiting her grandmother in a hospice

Trust a professional

My first career was in architectural stained glass, but I also had a part-time job at a nursing home. One of the nurses asked me to help her lay out a woman who had just died. I was very nervous, but it turned out to be an amazing experience.

I had never seen anyone treat another person with such gentleness and respect. As the nurse washed her and did her hair as though she were still alive, I was in awe. She made her look lovely, in her favourite clothes and make-up.

I understood the huge value that this nurse placed on another person’s life. It was this moment that helped me choose my own future in caring for people at the end of their lives.

Focus on pain relief

While waiting for my nursing training to start, I worked in a different nursing home, where I had an awful experience.

I was looking after an elderly woman who was dying of uterine cancer and had become bedbound. One day, the nursing sister on duty told me to get her out of bed to use the commode. I went to do as I was told, but as soon I touched the woman she dug her nails into me and screamed out in pain. I had never witnessed such agony.

Filled with rage, I went straight to the nurse and shouted at her that nobody in this day and age should be allowed to experience such pain. Why were we moving her when it was clear she needed to be catheterised?

She listened to me and sorted out a catheter and a syringe driver for the pain. But it made me determined that no one should have to experience pain like that.

Communication is key

My father-in-law Dennis had been employed on the Crewe railway works, and after years of exposure to asbestos he was diagnosed with terminal lung cancer.

It was the poor communication we encountered that was really upsetting. He was never told his prognosis by a medical professional; in fact a hospital doctor, knowing my nursing background, asked me to tell him instead. I couldn’t believe they would put that kind of pressure on me. But I went ahead and did it; I felt that at least I would do a better job than this doctor.

Adrienne Betteley’s late father-in-law, Dennis

As soon as I’d told my father-in-law, I felt like the grim reaper. The whole experience blurred the boundaries between my professional life and my private relationship with him – it was damaging and I felt a mixture of guilt and anger.

Dennis was encouraged to have palliative chemotherapy, without being warned of the side effects. Any extra time the chemo bought him was overshadowed by painful mouth ulcers, nausea and fatigue. The treatment destroyed any quality of life, and barely extended it: he died within six months.

If he had been given an informed choice about treatment, I’m sure things could have been different.

Say goodbye the right way

A few years ago, my mother died of oesophageal cancer, like her own mum. My dad and I were at her side, and I’d spent the last week in a camp bed next to her, mopping her forehead as we shared memories.

On the night she died, she put her arm around me and said: “Adrienne, I have to thank you for being the most wonderful daughter.” What a privilege to be able to use my knowledge and experience to support my mum and make her death easier.

Adrienne Betteley’s late mother

A Macmillan occupational therapist had transformed mum’s quality of life, making it possible to fulfil her wish of dying at home. As a nurse, I could advocate for her, and demand the right pain relief – but it really brought home how hard it would be for people without my professional background.

Knowing I’d done everything possible to fulfil her wishes made the grieving process easier, but I still had frustrations about what could have been better – especially the lack of support available at the very end. It sounds clichéd to say “dying is inevitable” or “death is the only certainty” – of course we all die, everyone knows that. But all too often, it feels like we are hiding from it. The fact that it will affect every one of us should galvanise us into action, so we demand a “good” death that is pain-free and meets our preferences about treatment and location – for ourselves and those we care about.

Complete Article HERE!

Navigating the end of the road

Death doulas offer education, support to those seeking alternative options while dying or grieving

A screenshot of a video documenting a home funeral shows family members visiting their deceased loved on in a home setting. The video was produced by Lee Emmert and the University of Oregon’s School of Journalism and Communications Department.

By Courtney Vaughn

[W]hen both of her parents died six weeks apart, Nancy Ward had to confront death in a profound way.

She was lucky, sort of. Her parents had prearranged for their care after their deaths, but Ward recalls being uneasy with the post-mortem process when her father died of congestive heart failure.

“Up until this point, I had never seen a dead body because I was about as death-phobic as they come,” Ward says. “A man came into the room, he looked about 14, and unrolled a black plastic body bag on the gurney. I’m going, ‘Oh my God. This man was just living and breathing and now you’re gonna put him in a black plastic bag and do what?’ Put him out on the curb for waste management to pick up?”

Ward succinctly recalls the emotional sterility of the situation.

Nancy Ward

“This doesn’t feel right, this doesn’t feel good, it doesn’t feel loving, or respectful,” she thought to herself. “He doesn’t know my father. I know my father.”

Six weeks later, her mother died.

“I knew what was coming and didn’t like it, but I had nothing to replace it with,” Ward says.

Afterward, she became a death midwife, or “death doula” as some call it, availing herself to others so they didn’t have to go through the same process she did with her parents.

Ward is now used to confronting death. In fact, she and others have made a living out of it.

A few years ago, Ward and other colleagues in the death directives industry teamed up to form the End of Life Care Collaborative. Members help educate and guide people in their quest for home funerals and other self-directed death practices.

The group focuses on serving those who are dealing with the death of a loved one, or preparing for their own death.

Services range from home funeral preparation and arrangements, to help with navigating the traditional funeral process, to emotional and practical support for those delving into the end of their own lives, and a gamut of other services to serve those confronting death.

The ultimate goal, members say, is to help people achieve greater meaning, or a more comfortable process around dealing with death and accepting loss. To get there, clients must be willing to shake off some of the cultural stigma of death.

“As a society, we aren’t comfortable with dealing with death because it reminds us of our own mortality,” Ward says. “We think everybody should know what their options are and right now, they don’t. We’re trying to reach the people who want it done differently but don’t know what different looks like.”

Ward and the collaborative team help educate people on what their options are for preserving a loved one at home after they’ve died, or bringing the body of a loved one home if they choose.

Ward says most members of the collaborative try to operate on a sliding-scale fee system, to make sure no one is turned away because of finances.

“We all have different areas we like to focus on and that’s what makes the collaborative so important,” she says. “We can do everything from the totally esoteric to the toally practical.”

That means being a listener and helpful guide, or doing a load of laundry or providing a meal for a grieving household.

She points to a recent client she worked with- a woman dying of cancer- who wanted to be prepared when her final moments came, but more importantly, wanted to rely less on her family for her physical and emotional needs.

“She said, ‘my family is having a really hard time with this …I don’t want to burden them with my own questions and expressions, this is what I need you for,'” Ward recalls.

“Their psychological and emotional needs are unmet,” Ward says of many terminally ill patients. “My involvement is just simply working with the person on a psychological, spiritual, emotional level.”

Members of the collaborative are not isolated in their quest to provide resources and support for death directives, but their services aren’t widely available, or even widely culturally accepted.

Asher Wallis

“I have seen a good deal of anxiety arise from family members who are trying, in the midst of disorienting grief, to figure out what their loved ones, who had not planned logistically or financially for the events that would follow their death, would have wanted,'” Asher Wallis, an End of Life Care Collaborative member and grief counselor, explains.

He attributes some of the sources of that unnecessary stress to “culturally sanctioned misinformation about the physiological and psychological nature of dying such that both the family caregivers and the dying person think they are doing it wrong.”

Deborah Threadgill, a collaborative member who is also a certified funeral director, says the End of Life Care Collaborative focuses on making “everything family-directed,” meaning they never suggest or push services on clients. Rather, they try to educate them on their full range of options surrounding death and dying.

“We take something that is very, very traumatic in our society and taboo and make it something natural and beautiful,” she says.

Complete Article HERE!

Poet ponders life on the brink of death

Nina Riggs pens rhapsodic memoir about living with terminal cancer

That a writer with only months to live could carve out the time and energy to chronicle her experience of terminal cancer is an impressive feat. That a writer could accomplish this with such exuberant prose as Nina Riggs does in her debut memoir, “The Bright Hour: A Memoir of Living and Dying,” is revelatory. The book, birthed after Riggs’ 2016 essay, “A Couch is More Than a Couch,” which appeared in the New York Times column, Modern Love, captures vivid, dynamic moments, searing truths, bitter ironies and every delicate emotion in between.

Riggs’ great-great-great grandfather, Ralph Waldo Emerson, inspired the book’s title. “That is morning; to crease for a bright hour to be a prisoner of this, sickly body and to become as large as the World.” Riggs, who published a book of poetry in 2009 entitled “Lucky, Lucky,” was a great admirer of her literary ancestor. One particular phrase, “the universe is fluid and volatile,” in her favorite essay of his, “Circles,” helps her to wrap her mind around the parameters of her own mortality. “It allows for the idea that there are things that cannot be contained,” she writes.

Among her most referenced authors in “The Bright Hour,” though, is the 16th century French philosopher Michel de Montaigne, whose five out of six daughters, brother and best friend died prematurely. Montaigne ponders the weight of this kind of grief, and in him, Riggs finds a kind of kinship.

“I love about Montaigne that, despite roving bands of thieves and constant political upheaval, he reportedly never kept his castle guarded. He left all his doors unlocked. He acknowledged the terror that could come. But by considering it and allowing it in, he resolved to live with its presence.”

Riggs’ love of words was fervent, unbridled. She was a scrupulous linguist. The tones and the distinct sounds of syllables aroused in her a deep reflection.

“But the more I think about it, the more I’m struck by what a beautiful word it is – hospice,” she writes. “It is hushed, especially at the end. But it’s comfortable and competent sounding, too. A French word with Latin roots – very close to hospital but with so much more serenity due to those S sounds. (You see, I am growing increasingly fond of the letter S.)”

Her brief, melodic chapters, many only a page long, straddle the genres of prose and poetry, much like Emerson’s do.

Last year, Paul Kalanithi published “When Breath Becomes Air,” a memoir about living with terminal lung cancer. Kalanithi died at age 37, and like Riggs, lived for only approximately two years after his terminal diagnosis. Kalanithi’s book has been widely praised; Riggs herself deemed it “gorgeous.” “The Bright Hour” equals “Breath” in clarity, nuance and artistry. Like Kalanithi, Riggs makes acute examinations of the gradations of autonomy and agency while in treatment, and the ways in which relationships grow and reshape themselves in the face of a finite timeline.

Nina Riggs

“The Bright Hour” is also a precise study of how chronic and terminal illness affects members of the family. Early in the book, at a time when Riggs’ own cancer appears to be a relatively self-contained disease and her prognosis is good (“one small spot,” Riggs repeats like a comforting mantra), Riggs’ mother Jan is in treatment for terminal multiple myeloma. Riggs spends her time in between chemo infusions taking care of Jan. When Jan refuses further treatment, sorrow washes over Riggs. “See: She is dying,” she writes. “It is weird to write that – like I’m saying something bad about her behind her back. But it’s true. And no one knows it better than her. Eight years of cancer… My mom: my map, my Sistine Chapel, my ‘Lonely Planet,’ my beautiful ruin, my volcano.”

And it’s Riggs’ mother who, in many respects, models for her daughter the kind of perspective that Riggs later adapts when she learns that her own cancer is metastatic and incurable. “‘Dying isn’t the end of the world,’ my mother liked to joke after she was diagnosed as terminal…There are so many things that are worse than death: old grudges, a lack of self-awareness, severe constipation, no sense of humor, the grimace on your husband’s face as he empties your surgical drain into the measuring cup.”

Riggs was a wife and mother of two young sons, and as her illness progresses, she contemplates, keenly, the beauty and ferocity of the love she has for them. “When you fall in love with your kids, you fall in love forever. And that love forms the exact shape in the world of the cab of a beat-up pickup on the side of the dark highway – filled with safety and Stevie Wonder and okay-ness.” With her dear friend who is also parenting young children while living with terminal cancer, she exchanges hilarious texts about how they might monitor their children from the grave, as if “dying makes us more powerful parents than the living version of ourselves.”

Ultimately, this is Riggs’ magic. She has produced a work about dying that evokes whimsy and joy, one that sublimely affirms that the inevitability of death carries with it its own kind of light and grace. “We are breathless but we love the days,” she writes. “They are promises.”

Complete Article HERE!

I’m terrified of dying — and, apparently, so are you

Every Sunday Mindy Gillenwater volunteers for hospice care at the Robison Residence. Over the course of four years she as served as a companion to many patients like Kevin Sweat.

by Richard C. Gross

[W]hen I once conveyed concern to my father about his eventual death, his matter-of-fact response was, “We all die.”

And he did. At 89, of complications of pneumonia. Some say it was the best way to greet the hereafter: He went to sleep, into a coma, helped by doctor-administered doses of morphine. Yet when the ambulance initially came for him at the assisted living facility, his light brown eyes widened with fear.

I’m deathly afraid of dying. The idea of no more Richard weighs on me the older I get, and I’m getting up there. There’s so much more to do, so many more people to meet, so much to see, so much to live for, so much more to know. But there is no cure for aging.


 
I learned my fear of dying is not irrational; I have lots of company.

“Death is still a fearful, frightening happening, and the fear of death is a universal fear even if we think we have mastered it on many levels,” wrote Swiss-American psychiatrist Elisabeth Kübler-Ross in her seminal 1969 book, “On Death and Dying.”

Cultural anthropologist Ernest Becker, in his Pulitzer Prize-winning 1973 book, “The Denial of Death,” writes that “anxiety about death is a constant fact of life for everyone and that it is the underlying cause of the many other fears and phobias people experience.” Fears of being alone or stuck in a confined space, for example, are substitutes for fear of death.

Maybe singer Neil Diamond, now 76, expressed those very fears in the lyrics of his 1971 song about loneliness, “I Am … I Said:”

“But I got an emptiness deep inside/And I’ve tried/But it won’t let me go/And I’m not a man who likes to swear/But I never cared/For the sound of being alone.”

Alone or not, one’s mortality and the inevitability of death becomes more real the older we get, especially as relatives, friends and onetime coworkers — people with whom we’ve spent many years — die, shrinking our world, reminding us with a jolt that one day we will join them. Attending funerals becomes commonplace.

Seeking others for opinions about the fear of death, I attended a 90-minute seminar, called “Santa Fe Doorways,” hosted by Denys Cope, a registered nurse for nearly 50 years, including about 30 of them in hospice care. About 30 elderly people attended, all but three of them women; we sat in a wide circle in a windowless room in a retirement home.

Ms. Cope said, “We are all hard-wired to fear death,” and threw out a question: “When you think about death, what matters to you most?”

“To be able to die resting in God’s mercy,” replied one woman, acknowledging she is Christian.

Deep faith in one’s religion must be potently comforting, providing virtually certain assurance of peace as death approaches, perhaps, as another woman said, because of an abiding belief in an afterlife. Enviable. And for the secular among us?

One white-haired man, who experienced a near-death episode, approached the subject lightheartedly, maybe because he appeared so organized. He said he since has written his own obituary, letters to his loved ones and has paid for his cremation. This is a man who will meet his maker head-on.

Another woman took an amazingly positive approach toward death, reveling in its opposite: life.

“What I love about death is thinking how I’m going to live,” she responded to Ms. Cope’s question.

I’m not as sanguine and stubbornly turned back to Becker’s “Denial of Death” to reinforce my feelings about dying. For me, he hit a bull’s eye:

“This is the terror: to have emerged from nothing, to have a name, consciousness of self, deep inner feelings, and excruciating inner yearning for life and self-expression — and with all this yet to die. It seems like a hoax.”

Ms. Cope has another way of looking at death.

“When first faced with the fact they are dying, many people experience a tremendous amount of fear,” she wrote in her 2008 book, “Dying: A Natural Passage.” “Often, I am told, it is not death but the process of dying that is frightening. … As long as we remain attached to this world and to our life, it is a struggle to die. … When we surrender to the process of dying, there is an incredible inward flow of peace and grace.”

I hope I can surrender.

Complete Article HERE!

Helping Hands Offer Support at the End of Life

A growing network of ‘death doulas’ is gaining popularity while caring for patients and their families.

By Mary Kane

[E]lena Wertheimer still remembers the panic she felt last year after her terminally ill father, Vincent Battista, was released from the hospital to spend his last days at his Wyckoff, N.J., home. She didn’t know how to prepare. She wasn’t sure how to care for him—or herself. “It’s hard to think straight,” she says. “You’re under extreme stress.”

On the advice of friends, Wertheimer sought help from an end-of-life doula, a new type of caregiver for dying patients and their families. Also known as death doulas, they offer support through all the stages of dying, similar to the roles that birth doulas play during pregnancy and delivery. Doulas discuss a dying person’s wishes and concerns, and they create memory books for the family. They organize vigils and coach relatives on the signs of dying. Some run errands, organize paperwork or even plan home funerals.

Wertheimer, 49, was very close to her father, and her doula, Janie Rakow, helped her overcome her fear of watching him die. Rakow encouraged her to sit with him and hold his hand. Rakow gently guided her to his bedside after he passed, and Wertheimer and other family members spent four hours there, crying, laughing and telling stories. Rakow ensured they weren’t interrupted. “It was very, very special,” Wertheimer says. “I saw him finally not suffering. My last vision of him was peaceful. It made all the difference in the world.”

Doulas are gaining in popularity amid a growing effort to improve the end-of-life experience for patients and families, particularly when someone dies at home. Doulas cover “a huge gap” in time and resources that busy hospices can’t always provide, Rakow says. A hospice team advises families on medical care for the dying; doulas guide the dying and their loved ones through the end-of-life process, offering mostly emotional and other nonmedical support.

Finding a Doula

If you’re thinking of using a doula, you may find the search confusing. There are death midwives, mourning doulas, death coaches and more. Some are volunteers; others charge hourly rates of $25 to $100 or offer “Vigil Packages” costing $1,000 and up. There is no regulatory oversight or standard licensing, training or certification. “It’s still kind of the Wild West out there,” says Patti Urban, a doula in Guilford, Conn.

Insurance typically doesn’t cover costs for a doula. Before hiring one, check whether your local hospital or hospice has a volunteer doula program. But be sure the doula can provide all the hours you want.

The International End of Life Doula Association (www.inelda.org) is compiling an online state-by-state directory of doulas it has trained. The nonprofit has provided the training for hospitals and hospices in California, Indiana, New Jersey and New York, and it will train aspiring doulas in 12 cities this year, says Rakow, the association’s president. Doulas will also work with you in hospices, hospitals, assisted-living facilities and nursing homes.

Decide what you want from a doula. Do you need someone to organize end-of-life documents? Or to provide a 24-hour presence at the bedside? Set up a consultation, advises Merilynne Rush, co-founder of the Lifespan Doula Association, in Ann Arbor, Mich. Be sure your doula’s personality is a good fit. You might prefer a take-charge attitude or a soothing presence.

Most doulas charge an hourly rate. Start out with a few hours before making a larger commitment, Rush says. Ask for a contract spelling out services and fees.

Review a doula’s qualifications and training, including criminal background checks and previous experience. Some attend weekend seminars, while others serve a minimum number of vigil hours and pass exams to become certified.

Other groups that train doulas include MourningDoula.com and the Lifespan Doula Association, which details standards of practice at www.lifespandoulas.com. Doulagivers.com offers a free webinar to learn the basics of caring for a dying loved one.

Complete Article HERE!

End-of-life care: when CPR is wrong

Pursuing treatment a person has declined represents questionable ethical practice

CPR is the appropriate response when someone has a cardiac arrest, but it has no role in the patient who slips away naturally at the end of a long illness.

[T]he modern intensive care unit offers a wide range of life support mechanisms so that even the sickest person with multi-organ failure can be kept alive. Parallel to this, the media, and television in particular, has removed any veil of secrecy that may have existed about emergency and intensive care medicine. But it may also have raised expectations to an unreasonable level, with evidence to show that the public perception of the role of cardiopulmonary resuscitation (CPR) is not a realistic one.

The inappropriate use of CPR in certain end-of-life situations has been highlighted recently in medical literature. CPR is the appropriate response when someone has a cardiac arrest. However it has no role in the patient who slips away naturally at the end of a long illness. Senior clinicians have expressed concern that doctors who are called at the time of death feel they have no authority to withhold CPR, or they fear the legal risks of doing so – even where CPR is clearly pointless. As a result, patients with terminal cancer or end stage dementia are being vigorously resuscitated rather than allowed to die naturally.

However, this newspaper has uncovered another questionable aspect of end-of-life care. Responding to recent column, readers have described how patients who had clearly and formally indicated they did not wish to be resuscitated were in fact given CPR. In most cases, the treatment failed, but relatives are being traumatised – firstly by having their concerns pushed aside and then seeing their loved one’s body bruised and broken as a result of vigorous CPR.

In some cases this is happening despite having properly drawn-up advanced care directives present in the patient’s chart. In addition, many charts have DNACPR (do not attempt CPR) stickers prominently displayed on their front covers.

Whatever about the legality of ignoring a patient’s wishes in this way, pursuing treatment the person has declined represents questionable ethical professional practice. Healthcare regulators must take steps to address this breach of trust as a matter of urgency.

Complete Article HERE!

I’m Dying Up Here: Books on How to Grieve and How to Die

[I]’m never going to die. I’m sorry I can’t say the same for you. My role models for how to do death are Jesus and Wile E. Coyote. Yours are other dead people. However, because I’m never going to die, I’m super comfortable with the entire topic, and the fact that I’m late turning in this column on books about death and dying has nothing to do with avoiding the subject.

So an author who suggests the dead are not howling in the abyss but rather hanging out in what she imagines as a pretty “waiting area” — well, that’s an author who’s easy for me to love. Theresa Caputo’s television show, “Long Island Medium,” has been a mainstay on TLC, and in GOOD GRIEF: Heal Your Soul, Honor Your Loved Ones, and Learn to Live Again (Atria, $25.99), Caputo (with her co-writer, Kristina Grish) wants us to know what she has learned from all those years of channeling the dead: “It’s their greatest hope that you learn to heal and carry on.” The dead — or Spirit, as she calls them — are quite chatty and opinionated. Among the things Spirit wants you to know:

Your relationship with your loved one isn’t over; it has merely changed. (Even if the loved one can’t drive you to the airport, if you ask nicely Spirit might “help you get a cab.”) You can let your feelings rule you for short periods of time, but “you must also take active steps to heal.” (Spirit doesn’t like whiners.) When it’s your time, it’s (usually) your time, or at least in the “destiny window” of time. Caputo has a host of practical, rather adorable ideas for honoring Spirit, which often involve giving gifts to others in Spirit’s name.

After a while it occurred to me that if the departed behaved in the loving way Caputo describes, I would like them more when they were dead than when they were alive. No matter; I am entirely agnostic, and still found this book comforting and quite touching. I felt oddly close to my own dead parents as I read along.

Those whose loss is more recent may prefer a less warm and fuzzy approach — more of a “what can I do to get on with my life right now?” book. Resilience is a hot topic these days, and Lucy Hone has written a book about bereavement reflecting both her own research and her own grief. RESILIENT GRIEVING: Finding Strength and Embracing Life After a Loss That Changes Everything (The Experiment, paper, $15.95) begins with Hone’s own tragedy: In 2014, her 12-year-old daughter was killed in a car accident. Hone shows us how to harness the (thankfully common) power of our own resilience to work our way through a horrible loss.

Resilience is not a shield against suffering, Hone suggests. It enables us to feel and to move through emotions like pain and guilt so that we can continue to feel alive and experience happiness. Hone does not buy into the idea that you just feel your feelings and take all the time in the world; what if, like Hone herself, you have other kids at home, a demanding job, and an urgent need to function in the real world? Hone offers concrete strategies for regaining your equilibrium even in the greatest pain. Among them: Choosing where to focus your attention (not on hating someone or something, which consumes energy); taking your time with the body of the one you love (there is no mad rush to bury or memorialize beloved); and re-establish routines, particularly if you have children, who may need that structure even more than you do.

Despite her insistence to the contrary, there is a strong whiff of “just-get-on-with-it” matter-of-factness that may be a little beyond some of us. Patrick O’Malley’s GETTING GRIEF RIGHT: Finding Your Story of Love in the Sorrow of Loss (Sounds True, paper, $16.95), co-written by Tim Madigan, is for those of us made of less stern stuff. O’Malley was trained as a counselor, but when he lost his infant son, and he tried to work through the famous Kübler-Ross stages of grieving — denial, anger, bargaining, depression, and finally acceptance — he felt like a failure. Grief was not linear; it was more of an oscillation. O’Malley wanted to talk about his son, to tell others who his son was, even in the few months he was on this earth. He began to see the wisdom of the writer Isak Dinesen, who noted, “All sorrows can be borne if you put them in a story or tell a story about them.”

O’Malley gives us the tools to tell the story of the deceased: favorite memories, when he or she was happiest and saddest, how you learned about the death, and so forth. Different kinds of loss bring different stories, and different kinds of pain. Telling the story of how you loved and how you lost gives shape and meaning to what first seems to be a meaningless, uncontrollable event.

For a compelling argument for why we have to rethink the wisdom of end-of-life “heroics,” there is EXTREME MEASURES: Finding a Better Path to the End of Life (Avery, $27). The author, Jessica Nutik Zitter, is a physician who specializes in both critical care medicine and palliative care, the yin and yang of medicine. Critical care specialists are taught to save lives with all the technology and machinery at their disposal. Palliative care specialists need the opposite skill set: They have to know how to help a dying person let go. Zitter is trained in both.

Of course, it was not always thus. Dr. Zitter describes her first Code Blue as a resident. She rushes into the room to heroically save the patient, and instead she is asked to resuscitate someone who is clearly dead, or should be. “With each compression, there is a sickening click, which I don’t recognize until I hear someone next to me whisper, ‘His whole chest is breaking,’” she writes. “This man is dead.”

The patient stays dead. But in that moment Zitter realizes that there must be a better way to depart this earth. She also discusses how palliative care can respond to many of the most painful symptoms of dying in a way that care geared toward prolonging life cannot. And why, at the end of life, less is often more compassionate. Like Atul Gawande’s “Being Mortal,” Zitter’s book shows how knowing when to do nothing is as vital to being a good doctor as knowing when to do everything.

As compared to the more philosophical “Extreme Measures,” John Abraham’s HOW TO GET THE DEATH YOU WANT: A Practical and Moral Guide (Upper Access, paper, $14.95) is exactly as nuts and bolts as it sounds. Abraham, a thanatologist and Episcopal priest, writes extensively about advance directives and how to ensure your wishes are abided by; and then, he tells us the least painful and messy ways to go. It may not be easy to read about these methods, but they affirm the idea expressed by a popular button worn by Abraham and other members of the Final Exit Network — “Let me die like a dog” — because anyone who has ever had to euthanize a beloved pet knows how painless and peaceful death can be. Those of us who fear loss of control of our lives more than we fear death will find Abraham’s book edifying. I even appreciate the phrase he uses instead of assisted suicide; he prefers “deliberate life completion.”

Knowing Nina Riggs died shortly after writing THE BRIGHT HOUR: A Memoir of Living and Dying (Simon & Schuster, $25), the story of her experience with metastatic breast cancer, makes this moving and often very funny memoir almost unbearable to read. But that’s because it is not one bromide after the other. It is true, and it might crush you. There is one moment here that says everything about how lonely you can feel when you’ve been told you have a disease. It’s past midnight, and Riggs and her husband are lying in bed: “‘I just can’t wait for things to get back to normal,’ says John from his side of the moon.” Riggs realizes there may not be a “normal” anymore, and reacts with anger, and a growing resolve that we all wish we could achieve: “Thinking that way kind of invalidates my whole life right now. I have to love these days in the same way I love any other.”

I’ll just say this: You can read a multitude of books about how to die, but Riggs, a dying woman, will show you how to live.

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