Tag: Conscious Living

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How Does a Buddhist Monk Face Death?

If we learn to celebrate life for its ephemeral beauty, its coming and going, we can make peace with its end.

Geshe Dadul Namgyal

By George Yancy

This is the first in a series of interviews with religious scholars from several faiths — and one atheist — on the meaning of death. This month’s conversation is with Geshe Dadul Namgyal, a Tibetan Buddhist monk who began his Buddhist studies in 1977 at the Institute of Buddhist Dialectics in Dharamsala, India, and went on to earn the prestigious Geshe Lharampa degree in 1992 at Drepung Loseling Monastic University, South India. He also holds a master’s degree in English Literature from Panjab University, Chandigarh, India. He is currently with the Center for Contemplative Science and Compassion-Based Ethics, Emory University. This interview was conducted by email. — George Yancy

George Yancy: I was about 20 years old when I first became intrigued by Eastern thought, especially Buddhism. It was the transformation of Siddhartha Gautama to the Buddha that fascinated me, especially the sense of calmness when faced with competing desires and fears. For so many, death is one of those fears. Can you say why, from a Buddhist perspective, we humans fear death?

Dadul Namgyal: We fear death because we love life, but a little too much, and often look at just the preferred side of it. That is, we cling to a fantasized life, seeing it with colors brighter than it has. Particularly, we insist on seeing life in its incomplete form without death, its inalienable flip side. It’s not that we think death will not come someday, but that it will not happen today, tomorrow, next month, next year, and so on. This biased, selective and incomplete image of life gradually builds in us a strong wish, hope, or even belief in a life with no death associated with it, at least in the foreseeable future. However, reality contradicts this belief. So it is natural for us, as long as we succumb to those inner fragilities, to have this fear of death, to not want to think of it or see it as something that will rip life apart.

We fear death also because we are attached to our comforts of wealth, family, friends, power, and other worldly pleasures. We see death as something that would separate us from the objects to which we cling. In addition, we fear death because of our uncertainty about what follows it. A sense of being not in control, but at the mercy of circumstance, contributes to the fear. It is important to note that fear of death is not the same as knowledge or awareness of death.

Yancy: You point out that most of us embrace life, but fail or refuse to see that death is part of the existential cards dealt, so to speak. It would seem then that our failure to accept the link between life and death is at the root of this fear.

Namgyal: Yes, it is. We fail to see and accept reality as it is — with life in death and death in life. In addition, the habits of self-obsession, the attitude of self-importance and the insistence on a distinct self-identity separate us from the whole of which we are an inalienable part.

Yancy: I really like how you link the idea of self-centeredness with our fear of death. It would seem that part of dealing with death is getting out of the way of ourselves, which is linked, I imagine, to ways of facing death with a peaceful mind.

Namgyal: We can reflect on and contemplate the inevitability of death, and learn to accept it as a part of the gift of life. If we learn to celebrate life for its ephemeral beauty, its coming and going, appearance and disappearance, we can come to terms with and make peace with it. We will then appreciate its message of being in a constant process of renewal and regeneration without holding back, like everything and with everything, including the mountains, stars, and even the universe itself undergoing continual change and renewal. This points to the possibility of being at ease with and accepting the fact of constant change, while at the same time making the most sensible and selfless use of the present moment.

Yancy: That is a beautiful description. Can you say more about how we achieve a peaceful mind?

Namgyal: Try first to gain an unmistaken recognition of what disturbs your mental stability, how those elements of disturbance operate and what fuels them. Then, wonder if something can be done to address them. If the answer to this is no, then what other option do you have than to endure this with acceptance? There is no use for worrying. If, on the other hand, the answer is yes, you may seek those methods and apply them. Again, there is no need for worry.

Obviously, some ways to calm and quiet the mind at the outset will come in handy. Based on that stability or calmness, above all, deepen the insight into the ways things are connected and mutually affect one another, both in negative and positive senses, and integrate them accordingly into your life. We should recognize the destructive elements within us — our afflictive emotions and distorted perspectives — and understand them thoroughly. When do they arise? What measures would counteract them? We should also understand the constructive elements or their potentials within us and strive to learn ways to tap them and enhance them.

Yancy: What do you think that we lose when we fail to look at death for what it is?

Namgyal: When we fail to look at death for what it is — as an inseparable part of life — and do not live our lives accordingly, our thoughts and actions become disconnected from reality and full of conflicting elements, which create unnecessary friction in their wake. We could mess up this wondrous gift or else settle for very shortsighted goals and trivial purposes, which would ultimately mean nothing to us. Eventually we would meet death as though we have never lived in the first place, with no clue as to what life is and how to deal with it.

Yancy: I’m curious about what you called the “gift of life.” In what way is life a gift? And given the link that you’ve described between death and life, might death also be a kind of gift?

Namgyal: I spoke of life as a gift because this is what almost all of us agree on without any second thought, though we may differ in exactly what that gift means for each one of us. I meant to use it as an anchor, a starting point for appreciating life in its wholeness, with death being an inalienable part of it.

Death, as it naturally occurs, is part of that gift, and together with life makes this thing called existence whole, complete and meaningful. In fact, it is our imminent end that gives life much of its sense of value and purpose. Death also represents renewal, regeneration and continuity, and contemplating it in the proper light imbues us with the transformative qualities of understanding, acceptance, tolerance, hope, responsibility, and generosity. In one of the sutras, the Buddha extols meditation on death as the supreme meditation.

Yancy: You also said that we fear death because of our uncertainty about what follows it. As you know, in Plato’s “Apology,” Socrates suggests that death is a kind of blessing that involves either a “dreamless sleep” or the transmigration of the soul to another place. As a Tibetan Buddhist, do you believe that there is anything after death?

Namgyal: In the Buddhist tradition, particularly at the Vajrayana level, we believe in the continuity of subtle mind and subtle energy into the next life, and the next after that, and so on without end. This subtle mind-energy is eternal; it knows no creation or destruction. For us ordinary beings, this way of transitioning into a new life happens not by choice but under the influence of our past virtuous and non-virtuous actions. This includes the possibility of being born into many forms of life.

Yancy: As a child I would incessantly ask my mother about a possible afterlife. What might we tell our children when they express fear of the afterlife?

Namgyal: We might tell them that an afterlife would be a continuation of themselves, and that their actions in this life, either good or bad, will bear fruit. So if they cultivate compassion and insight in this life by training in positive thinking and properly relating to others, then one would carry those qualities and their potential into the next. They would help them take every situation, including death itself, in stride. So, the sure way to address fear of the afterlife is to live the present life compassionately and wisely which, by the way, also helps us have a happy and meaningful life in the present.

Complete Article ↪HERE↩!

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I’m Going to Die.

I May as Well Be Cheerful About It.

By Mary Pipher

While death is inevitable, our attitude about it is not.

Generally, I don’t think about death during the day. My schedule is full, and I focus on what is right before my eyes. It’s usually only when I go to funerals that I reflect upon deaths past, present and future; most of the time I think about life. Still, about once a month I wake in the night and know with absolute clarity that I will soon be gone.

I have always felt my own finitude. My father had his first stroke at 45 and died at 54. My mother died of diabetes at 74. I am 72. I would like to attend my last grandchild’s high school graduation and meet at least one great-grandchild. However, with my family history, that is unlikely. Now, with the news filled with stories of the coronavirus, I am reminded of the many random diseases that can strike suddenly and lethally.

Like almost all my peers, I want to die young as late as possible. I don’t want to live beyond my energy level. I don’t want to suffer dementia or lie helpless in a hospital. I want to die while I still believe that others love me and that I am useful.

I have done what I can to prepare for my death. I have a will, a health care proxy and medical directives. I’ve had many conversations with my family and my doctor about end-of-life decisions. My mnemonic device for all of them is, “If in doubt, snuff me out.”

While death is inevitable, our attitudes about it are not. We can be sanguine or gloomy, solicitous of others or self-absorbed. We can approach our deaths with fear and resistance or with curiosity and a sense of mission.

Facing death offers us an opportunity to work with everything we have within us and everything we know about the world. If we have been resilient most of our lives, most likely we will cope well with our own dying. It is frightening, of course, but it is our last chance to be a role model, even a hero.

I’d like to face death with the courage of my grandmother. The last time I visited her, she was recently widowed and dying from leukemia. She lay in bed in her small home in eastern Colorado. I could see she was in pain and could barely move, but when I asked about her health, she replied: “Let’s talk about you. How is college going this year?”

When I complimented her on her courage, she said simply, “I am going to be in pain and die soon no matter how I behave, so I might as well be cheerful.”

By the time we are in our 70s, we are likely to have witnessed many people dying. I’ve seen my parents and my husband’s parents die “bad deaths” with months of suffering and too much medical intervention, and I’ve witnessed peaceful deaths in rooms filled with love. Most of us boomers know how to behave at a bedside and have a sense of how we want to act when it’s our turn to be the one in bed.

We also have had decades of observing the rituals of death — hospitals and hospice, funerals, burials and the communal meals afterward. From these experiences, we have learned what we do and don’t want when it’s our turn. We may continue some of these traditions, but we will also design our own. Some of my friends with terminal illnesses have hosted goodbye parties in parks or at our local blues bar. Wakes with dancing, music and storytelling are back in style. Many of us want pine box coffins, green burials or cremations with our ashes tossed in beautiful places.

What happens after death is a popular topic among people I know. Opinions range from, “We turn into dirt,” to “I will see the face of God.” My writer friends want heaven to have a good library. One friend believes we will return to the place we were before we were born.

Jean Nordhaus wrote, “The dead are all around us / feathering the air with their wings.” A therapist who lost her young, cello-playing husband told me she feels his presence and knows they are still deeply connected in spirit. She finds that many people are afraid to die because they have no language for the numinous; however, she is certain that neither life nor relationships end with death.

I feel death may not be as big a change as we suppose. Rather, it might be like crossing a river.

I like to think that my relatives and friends will be waiting for me on the other side. I like to imagine grassy banks and flower-filled pastures shining in the sun. I like to think a lot of things, but I don’t know for sure.

I am not a particularly mystical person, but I have had mystifying experiences. When my Aunt Grace died, I drove to the Ozarks for her funeral. Her little house was surrounded by pink surprise lilies — what my cousins called “naked ladies.” The next spring, even though I had not planted them and they had never come up before, surprise lilies popped up in my garden. The year after that they popped up again but in different places. I concluded that Aunt Grace was greeting me. If I wanted to send a message after death, I would do it with flowers, too.

I love the world but I cannot stay. Death is democratic and we will all participate in its enactment. I will miss the beauty all around me. I have taken so much pleasure in the natural world, in people and books, in music and art, in cups of coffee and lolling cats. If I knew that I had a month left to live, I wouldn’t spend my time much differently than I do now.

All of my life I have loved snow.

When I was a girl in the 1950s, snow fell often in the long winters of western Nebraska. I remember one winter when, after the streets were plowed, mountains of snow 10 feet tall stood in the middle of the streets. As a young mother, my favorite days were snow days when our family could stay home and play board games. I would make soup and popcorn. I relished taking my children outside to do the things that I had done in the snow as a girl. I loved falling asleep with my family safe on a blizzardy night when the streets were impassable and a blanket of peace covered our town.

Now, snow has become a profoundly spiritual experience. When it snows, I sit by my window and watch it fall. I go deep into its purity and softness.

Snow falls inside and outside of me. It settles my brain and calms my body.

I hope death feels like watching the snow grow thicker and thicker. Doctors call dying of a morphine overdose being “snowed.” I would not mind that at all. I would like to disappear in a whiteout.

Complete Article ↪HERE↩!

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Love is not enough for end of life decisions…

This ground breaking video is challenging the commonly held perception that a loving relationship is all you need to ensure your end-of life wishes will be met.

The launch of the video is timed to stimulate interest and discussion in the lead up to the third annual, National Advance Care Planning Week, 23 – 27 March, an initiative led by Advance Care Planning Australia (ACPA), with funding from the Australian Government.

Produced by the award-winning Creativa video production agency, the Love is Not Enough video introduces two couples and one father and daughter, testing how well they know their loved one. While they were mostly able to correctly answer questions about preferred foods and holiday destinations, when it came to questions about end-of-life treatments they were less sure.

Interviewees were confronted with tough hypothetical treatment decisions for their loved ones including whether they would accept tube feeding following a stroke or extend their cancer treatment if it meant never leaving hospital.

This discrepancy is backed up by research[1]that shows that the people closest to us often don’t know our end-of-life wishes unless we expressly have the conversation or write our preferences in an Advance Care Directive.

“We created this video to shine a light on the fact that even with those closest to us, it is wrong to assume they would know our preferences for end-of-life care,” explains ACPA Program Director, Linda Nolte.

“While the questions posed in the video may seem confronting, these real-life scenarios play out every day in hospitals across Australia. It’s a terrible burden for families to bear having to blindly make life and death decisions, without knowing their loved one’s preferences. A simple discussion today can save a lot of heartache tomorrow.

“Despite legislative and policy support for advance care planning across Australia, public understanding and uptake remains low. People need to know that a loving relationship is no substitute for advance care planning. The person closest to you may not be the best choice to make decisions for you if you become too unwell to speak for yourself.

“With National Advance Care Planning Week coming up, it’s an opportunity for all of us to consider our future medical care, whether it’s attending an event or having a chat with loved ones. I urge all Australians to join us and find out more,” says Ms Nolte.

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On Why We Should Talk More About End-Of-Life Experiences

By Christopher Kerr, M.D., Ph.D.

In many ways, the end-of-life journey is a culmination of an integrative process that distills life into its finest moments. It is about revisiting and rewriting the life scripts we have been handed, whether by chance or by design. That said, the voices and experiences of dying patients matter. 

Dying is more than the suffering we either observe or experience. Within the obvious tragedy of dying are unseen processes that hold meaning. Dying is a time of transition that triggers a transformation of perspective and perception.

If those who are dying struggle to find words to capture their inner experiences, it is not because language fails them but because it falls short of the sense of awe and wonder that overcomes them. They experience a growing sense of connectedness and belonging. They begin to see not with their eyes but with their unlocked souls.

What it all means is that the best parts of living are never truly lost. I am reminded of this when elderly patients experience the return of the mother or father they lost in childhood; when soldiers speak of haunting battles; when children talk of dead animals returning to comfort them; and when women cradle babies long lost to their touch. This is when caution vanishes and courage prevails.

What matters is not so much what is seen but what is felt.

As poets and writers have reminded us throughout history, love endures. When the end draws near, time, age, and debility vanish to give way to an incredible affirmation of life. Dying is an experience that pulls us together by binding us to those who loved us from the start, those we lost along the way, and those who are returned to us in the end.

In the words of Thomas Jefferson, “I find that as I grow older, I love those most, whom I loved first.” The dying most often embark on a hopeful journey in which they are embraced one more time by those who once gave their lives meaning, while those who hurt them drift away. Death is also a form of final justice, one in which the scales are balanced by love and forgiveness.

Having witnessed so much death as a hospice doctor, I can’t say that I fully embrace the notion of a “good” death. There is no such thing as a good death, only good people. Death and dying are merely extensions of what came before; we die as we lived. This cannot always be reconciled with happiness or goodness, particularly if the balance of one’s life had little to do with either.

Despite the tragedy, being a hospice doctor is uplifting.

Although I am often saddened by the tragedy and trauma that so many have endured, I remain amazed by the strength of the human spirit in its endless quest to heal what’s harmed or broken. For those denied fulfillment and happiness in life, it may be in that struggle that hope and grace reside.

Dying may be isolating and even lonely, but patients often find comfort in spaces where they can continue to express themselves, connect with others, and still matter. Long after the battle to overcome illness is lost, the dying continue to fight, but they are not fighting against, only for and toward. They fight to have relevance, to find meaning—right up until their very last breath.

Why else would people, bedridden and fading, find it in themselves to share their stories? Not the embellished versions we typically tell, but the real stuff that comes from having lived and mattered—from hard-felt pains, deep secrets, and distant losses to enduring love and wisdom regained. These moments, measured in days and hours, are not motivated by the possibility of future gain. They constitute a wished-for and self-generated ending.

Illness and tragedy naturally demand that we look inward, an artifact of our fight for survival and our innate resistance against mortality. As sickness begins to overtake the drive to live, there is a shift. The dying continue to cherish life, but not for themselves—for others. They express concern for loved ones, in gestures of kindness and hope, even as they say goodbye. Buried within their stories is the same awe-inspiring message, repeated again and again.

During the end of life, people have faith that their voices, softened or at times silent, mattered. And that they would still be heard.

Complete Article ↪HERE↩!

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Working in Hospice Changed My Perspective on Death

“Like many physicians, I’d never considered that there might be more to death than an enemy to be fought.”

By Christopher Kerr

Tom was only forty when he arrived at Hospice Buffalo with end-stage AIDS. Unlike most of my patients, he was not surrounded by loved ones. Not a soul came to visit, ever. He was rather stoic, so I wondered if the absence of visitors was his choice rather than an indicator of his loneliness. Maybe that was his way of refusing to give death an audience.

I was puzzled but, wanting to respect his privacy, did not inquire. Tom’s emaciated body showed traces of once-chiseled muscles. He had kept fit and was still quite young, which gave me hope. In light of his age and physical conditioning, I thought that his body would be more likely to respond positively to life-prolonging treatment. Not long after he was admitted, I went to the nurse’s station and decreed, “I think we can buy Tom some time. IV antibiotics and fluids should do it.”

The charge nurse, Nancy, had been at Hospice Buffalo for much longer than I had. She knew her job, and everyone looked up to her. She was also not one to mince words. Still, her response took me by surprise: “Too late. He’s dying.”

I said, “Oh really?”

She replied, “Yep. He’s been dreaming about his dead mother.” I chuckled awkwardly—equal parts disbelief and defensiveness. “I don’t remember that class from medical school,” I said.

Nancy did not miss a beat. “Son, you must have missed a lot of classes.”

I was a thirty-year-old cardiology fellow finishing my specialty training while working weekends at Hospice Buffalo to pay the bills. Nancy was an exceptional veteran nurse who had limited patience for young, idealistic doctors. She did what she always did when someone was out of their depth—she rolled her eyes.

I went about my business, mentally running through all the ways modern medicine could give Tom another few weeks or even months. He was riddled with infection, so we administered antibiotics. Because he was also severely dehydrated, I asked for a saline drip. I did all I could do as a doctor to prolong his life, but within forty-eight hours, Tom was dead.

Nancy had been right in her estimation of where he was on the downward slope. But how could she have known? Was it just pessimism, the numbing effect of having watched so many people die? Was she truly using a patient’s dream as a predictor of life-span? Nancy had worked in hospice for more than two decades. She was tuned in to aspects of dying I knew nothing about: its subjective dimensions. How patients experienced illness, particularly dying, had mostly been ignored throughout my training as a doctor.

Like many physicians, I’d never considered that there might be more to death than an enemy to be fought. I knew about blind intervention—doing everything possible to keep people conscious and breathing—but had little regard for the way any given individual might wish to die, or for the unavoidable truth that ultimately death is inevitable. Because it had not been part of my medical education, I failed to see how the subjective experience of dying could be relevant to my role as a doctor.

It was ultimately the remarkable incidence of pre-death dreams and visions among my dying patients that made me realize how significant a phenomenon this was, both at a clinical and a human level. As a hospice doctor, I have been at the bedsides of thousands of patients who, in the face of death, speak of love, meaning, and grace. They reveal that there is often hope beyond cure as they transition from a focus on treatment to notions of personal meaning. As illness advances, grace and grit collide and bring new insight to those dying and their loved ones, insight that is often paradoxically life-affirming. This experience includes pre-death dreams and visions that are manifestations of this time of integration and coming into oneself. These are powerful and stirring experiences that occur in the last days or hours of life and that constitute moments of genuine insight and vivid re-centering for patients. They often mark a clear transition from distress to acceptance, a sense of tranquility and wholeness for the dying. Patients consistently describe them as “more real than real,” and they are each as unique as the individual having them.

These end-of-life experiences are centered on personal histories, self-understanding, concrete relationships, and singular events. They are made of images and vignettes that emanate from each person’s life experiences rather than from abstract preoccupations with the great beyond. They are about a walk in the woods relived alongside a loving parent, car rides or fishing trips taken with close family members, or seemingly insignificant details such as the texture or color of a loved one’s dress, the feel of a horse’s velvety muzzle, or the rustling sound of a cottonwood’s shimmering leaves in the backyard of a childhood home. Long-lost loved ones come back to reassure; past wounds are healed; loose ends are tied; lifelong conflicts are revisited; forgiveness is achieved.

Doctors owe it to their patients to incorporate this awareness into our practice. End-of-life experiences ought to be recognized as evidence of the life-affirming and inspiring resilience of the human spirit that drives them. They are proof of humanity’s built-in, natural, and profoundly spiritual capacity for self-sustenance and self-healing, grace and hope. They help restore meaning at end of life and assist in reclaiming dying as a process in which patients have a say. They also benefit those left behind, the bereaved, who get relief from seeing their loved ones die with a sense of peace and closure.

This subjective experience of dying is also a powerful reminder that beauty and love in human existence often manifest themselves when we least expect it. The patients who summon up comforting processes at life’s end are beset by symptoms of a failing body over which they have limited control. They are at their most frail and vulnerable, existing within suffering states of aching bones and hunger for air. Catheters, IVs, and pills may now be part of their every day, sometimes literally functioning as extensions of their bodies under the daily medical management that is their new and irreversible lot. They may experience various degrees of cognitive, psychological, and spiritual dissonance. Yet even as the inexorable march of time is taking its toll on their bodies and minds, many also have pre-death dreams and visions in the context of which they display remarkable awareness and mental sharpness.

Herein truly lies the paradox of dying: patients are often emotionally and spiritually alive, even enlightened, despite a precipitous physical deterioration. The physical and psychological toll of dying may be undeniable, but it is also what makes the emotional and spiritual changes brought about by end-of-life experiences border on the miraculous. Doing justice to end-of-life experiences means accounting for this paradox, one in which death and dying transcend physical decline and sadness to include spiritual awakening, beauty, and grace. Or, as the title character in the acclaimed Tuesdays with Morrie puts it, “Aging is not just decay, you know. It’s growth. It’s more than the negative that you’re going to die.” This is also true of the dying process, which often functions as a summing up, culmination, and capstone, an opportunity to recognize and celebrate our humanity in all its complexity and dignity rather than just as an ending.

Excerpted from DEATH IS BUT A DREAM by Christopher Kerr, MD, PhD and Carine Mardorossian, PhD. Published on February 11, 2020 by Avery, and imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2020 by William Hudson, LLC

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Many Americans say they want to die at home.

It’s not always easy to make that happen.

By Haider J. Warraich

Roger Kellison had Parkinson’s disease that was quickly progressing. He was a private man who eventually moved into his daughter’s house when he was unable to take care of himself.

“He had not come to our house to live,” Daniel Wallace, his son-in-law, told me. “He had come to our house to die. The last thing he wanted to do was die at a hospital.”

Roger Kellison was part of a striking trend: For the first time since the early part of the 20th century, more Americans are dying at home than in the hospital or a nursing home. This finding, included in a recent study by me and co-author Sarah Cross, is encouraging because the vast majority of Americans say they prefer to die at home. So this reflects that many more people are being able to achieve that goal.

But as more people die at home, it also means that much more responsibility falls on the shoulders of patients and their caregivers. Caregiver burden is a growing problem in America. As a doctor tending patients with heart failure, I am keenly aware of how hard managing care can be for both patients and family members.

Taking care of an ailing loved one can be exhausting physically and emotionally, and frequently caregivers lose sight of themselves. My study co-author used to work as a social worker and has seen many families struggle with managing a loved one at home. “Caregivers need to prioritize their own care,” she told me. “It isn’t selfish to take breaks, make time with friends, ask for help, look into respite options.”

After Kellison moved in with his daughter, he stayed mostly in the upstairs guest room, and for the last five months rarely, if ever, came downstairs. That physical separation was important for everyone.

“It was helpful that we delineated the house and our lives. We still went out and we still had people over,” Daniel Wallace said. “Sometimes he was part of that and sometimes he wasn’t.”

Making shared living space work is just one issue. If dying at home is important to someone, that person and their caregivers should think about — and prepare for in advance, if possible — other factors:

Perhaps most importantly, the person nearing the end needs to make clear that they want to die at home. Family, friends and medical teams need to know that. Physicians and nurses will frequently ask patients how they would like their end to be, particularly what types of intensive treatments they might or might not want. They rarely ask people where they would like to die, however.

Once at home, there are certain physical considerations worth noting: Many people have strong feelings about where in the house they would like to spend their last days — in a dark, quiet room, or looking out a window, or away from too much hubbub. Nearness to a bathroom is key. Sometimes, light remodeling, such as installing handrails in bathrooms or ramps, is helpful.

A person at the end of life will probably have feelings about who they want to spend time with — or who they don’t want — so it is important to discuss in advance who will provide caregiving, along with who might provide occasional backup for regular caregivers.

There are often community resources available as well, such as end-of-life doulas trained to care for the physical, emotional and spiritual needs of a dying person. Adaire Petrichor is one such doula. She said she “helps with rituals, ceremonies, legacy work and advice on nonmedical comfort care.”

Online resources are available through such organizations as Compassion & Choices. The Conversation Project can provide guidance for patients and their loved ones about what to expect in the final days.

Perhaps the most critical resource available for those wanting to die at home is hospice care. Hospice is covered by Medicare (and most other insurance) for patients with an expected life expectancy of less than six months. It is designed to help caregivers take care of a dying loved one at home with 24-hour call-in numbers to answer urgent questions, visits from hospice nurses, social workers and other staff. But home hospice does not provide full hands-on service, and caregivers still carry the bulk of the responsibility. While in many cases the care of the patient can be tougher than loved ones expect, most people find hospice guidance and support invaluable.

Wallace said hospice was key for taking care of his wife’s father after he moved in with them to die.

“Hospice was a way to bring a quality of life that he didn’t have before, because he couldn’t take care of himself and we couldn’t take care of him without hospice,” Wallace said. “If you need a wheelchair, they have that. If you need Haldol [an antipsychotic drug to treat end-stage delirium and agitation], morphine, they have it, and you can have it the next day.”

While the vast majority of hospice services are delivered at home, hospice care can also be provided in nursing facilities for dying patients who require more intensive medical care or don’t have other social supports.

Hospice is the primary reason more Americans are able to die at home today. Yet, only half of Americans who die receive hospice help. One reason may be that some people don’t ask for it because they think it is sending a depressing message to their ailing loved one or admitting what they may not want to acknowledge — that the person is in their last days.

“The obvious misconception is that it’s a death sentence,” Wallace said. But “it really is a quality-of-life sentence.”

Outside remote regions, most areas have multiple hospice agencies from which to choose.

Agencies can differ in how often nurses visit, what they might offer in crises and what equipment they provide, including hospital bed, oxygen tanks, wheelchairs. It is worth having a discussion about the support they’ll provide and other options before committing to a particular hospice provider.

With advances in public health, medicine and longevity, people now live longer with disabilities. Death is not just the terminal event in our mortal lives, but the final word of a story that can often take years to unfold.

Intermixed with periods of relative stability can be moments of terror as someone hits their final days. Physicians and other health-care providers need to prepare patients and families for these health shocks, such as worsening breathing for a patient with heart or lung disease or a pain crisis for someone with cancer.

Calling 911 when an end-of-life crisis hits initiates a cascade that can often lead to the hospital. This might be necessary if a patient has symptoms that caregivers at home feel unable to manage. For that reason, Cross said, “I recommend not making promises to a loved one such as ‘I promise I’ll always take care of you at home.’ When it becomes too much to manage at home, I’ve seen many caregivers racked with guilt for having ‘broken a promise.’ ”

Some endings can take a much more erratic course, common for those with heart or lung disease. This might be one reason our study showed that patients with cancer are more likely to be able to die at home than those with heart or lung disease.

One morning, a year after his father-in-law had moved in, Wallace went upstairs to check on him and unexpectedly found he had died.

“He did not present himself as dying when it happened,” he said. “We weren’t on death watch or anything like that.”

Some caregivers I have talked to feel uncomfortable with the idea of their loved one dying at home. Even though death has occurred at home for eons, the 20th century interrupted that historical legacy, and for many, it is a novel concept.

But for many, fulfilling a loved one’s wish to die at home provides a fitting and natural end to the story of that person’s life.

When I asked Wallace whether he viewed his house differently after his father-in-law died in it, he said: “It deepens my experience of being alive, to be in a house where someone has died. It’s a remarkable thing.”

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‘I want to stare death in the eye’:

why dying inspires so many writers and artists

By &

It may seem paradoxical, but dying can be a deeply creative process.

Public figures, authors, artists and journalists have long written about their experience of dying. But why do they do it and what do we gain?

Many stories of dying are written to bring an issue or disease to public attention.

For instance, English editor and journalist Ruth Picardie’s description of terminal breast cancer, so poignantly described in Before I say Goodbye, drew attention to the impact of medical negligence, and particularly misdiagnosis, on patients and their families.

American tennis player and social activist Arthur Ashe wrote about his heart disease and subsequent diagnosis and death from AIDS in Days of Grace: A Memoir.

His autobiographical account brought public and political attention to the risks of blood transfusion (he acquired HIV from an infected blood transfusion following heart bypass surgery).

Other accounts of terminal illness lay bare how people navigate uncertainty and healthcare systems, as surgeon Paul Kalanithi did so beautifully in When Breath Becomes Air, his account of dying from lung cancer.

But, perhaps most commonly, for artists, poets, writers, musicians and journalists, dying can provide one last opportunity for creativity.

American writer and illustrator Maurice Sendak drew people he loved as they were dying; founder of psychoanalysis Sigmund Freud, while in great pain, refused pain medication so he could be lucid enough to think clearly about his dying; and author Christopher Hitchens wrote about dying from oesophageal cancer despite increasing symptoms:

I want to stare death in the eye.

Faced with terminal cancer, renowned neurologist Oliver Sacks wrote, if possible, more prolifically than before.

And Australian author Clive James found dying a mine of new material:

Few people read

Poetry any more but I still wish

To write its seedlings down, if only for the lull

Of gathering: no less a harvest season

For being the last time.

Research shows what dying artists have told us for centuries – creative self-expression is core to their sense of self. So, creativity has therapeutic and existential benefits for the dying and their grieving families.

Creativity provides a buffer against anxiety and negative emotions about death.

It may help us make sense of events and experiences, tragedy and misfortune, as a graphic novel did for cartoonist Miriam Engelberg in Cancer Made Me A Shallower Person, and as blogging and online writing does for so many.

Creativity may give voice to our experiences and provide some resilience as we face disintegration. It may also provide agency (an ability to act independently and make our own choices), and a sense of normality.

French doctor Benoit Burucoa wrote art in palliative care allows people to feel physical and emotional relief from dying, and:

[…] to be looked at again and again like someone alive (without which one feels dead before having disappeared).

A way of communicating to loved ones and the public

When someone who is dying creates a work of art or writes a story, this can open up otherwise difficult conversations with people close to them.

But where these works become public, this conversation is also with those they do not know, whose only contact is through that person’s writing, poetry or art.

This public discourse is a means of living while dying, making connections with others, and ultimately, increasing the public’s “death literacy”.

In this way, our conversations about death become more normal, more accessible and much richer.

There is no evidence reading literary works about death and dying fosters rumination (an unhelpful way of dwelling on distressing thoughts) or other forms of psychological harm.

In fact, the evidence we have suggests the opposite is true. There is plenty of evidence for the positive impacts of both making and consuming art (of all kinds) at the end of life, and specifically surrounding palliative care.

Why do we buy these books?

Some people read narratives of dying to gain insight into this mysterious experience, and empathy for those amidst it. Some read it to rehearse their own journeys to come.

But these purpose-oriented explanations miss what is perhaps the most important and unique feature of literature – its delicate, multifaceted capacity to help us become what philosopher Martha Nussbaum described as:

[…] finely aware and richly responsible.

Literature can capture the tragedy in ordinary lives; its depictions of grief, anger and fear help us fine-tune what’s important to us; and it can show the value of a unique person across their whole life’s trajectory.

Not everyone can be creative towards the end

Not everyone, however, has the opportunity for creative self-expression at the end of life. In part, this is because increasingly we die in hospices, hospitals or nursing homes. These are often far removed from the resources, people and spaces that may inspire creative expression.

And in part it is because many people cannot communicate after a stroke or dementia diagnosis, or are delirious, so are incapable of “last words” when they die.

Perhaps most obviously, it is also because most of us are not artists, musicians, writers, poets or philosophers. We will not come up with elegant prose in our final days and weeks, and lack the skill to paint inspiring or intensely beautiful pictures.

But this does not mean we cannot tell a story, using whatever genre we wish, that captures or at least provides a glimpse of our experience of dying – our fears, goals, hopes and preferences.

Clive James reminded us:

[…] there will still be epic poems, because every human life contains one. It comes out of nowhere and goes somewhere on its way to everywhere – which is nowhere all over again, but leaves a trail of memories. There won’t be many future poets who don’t dip their spoons into all that, even if nobody buys the book.

Complete Article ↪HERE↩!