What the Pandemic Taught Us About the End of Life and Grief

Hospice workers, ethicists and therapists say grief is a pathway toward healing

By Vicky Diaz-Camacho

Grief felt “closer” this year for Meagan Howard. It’s the only way she could describe it.

On May 16, her good friend died in a car accident. There was something different about this death. As a Black woman in the mental health field, Howard said she has personally felt the compounding trauma of the pandemic with racial tensions.

That’s why it hit harder.

But as she sat in silence and cried with another friend to mourn their loss, she felt the release.

“That was more healing than someone saying, ‘It’s going to be OK’,” she said.

Meagan Howard
Meagan Howard is transparent about her own difficulty to grapple with grief and now encourages others to find ways to navigate sometimes complex emotions.

Years ago, Howard personally struggled to acknowledge the grieving process when her grandmother died. Now, she works against that to help her own clients who are navigating complex feelings of anger, avoidance and sadness — symptoms of grief — and in her personal life.

She specifically counsels folks with substance use disorders at Midwest Recovery Centers, which can often stem from unresolved trauma and loss.

The pandemic sparked a new kind of uncertainty, ranging from housing and job security to health security. This is why it’s more important now than ever to take a moment to pause and feel, she added.

A paper for the National Institutes of Health (NIH) on preparing palliative care providers explained that “anticipatory grief is the normal mourning that occurs for a patient/family when death is expected.”

That anticipation evaporated in the wake of the public health crisis. Back in March 2020, the number of people infected and dying from complications skyrocketed. This, mental health experts say, caused a mental health whiplash.

“As a society, we’re just kind of told lock it down, keep it moving,” she said.

However, she witnessed a shift this year that ranges between communal trauma to communal grief.

Howard said grieving as a society has been an essential step toward collective healing.

“One of the most powerful things that I saw from the pandemic is this sense of community,” she said. “There is power in being able to share your grief in a community setting with someone else. (It) gives us power when we feel like we don’t have any.”

From a mental health perspective, grief is healthy.

“It’s needed, it’s necessary, it’s essential,” Howard said.

“If we’re not allowing ourselves that grieving process, then almost in a sense we almost start to die internally. And I know that sounds kind of morbid, but that’s what it feels like is happening if we’re not allowing that to come out.”

Researchers at the NIH outlined what they call “context of grief” during the pandemic, which underscored how the public health crisis complicated an already sensitive process.

The study identified three specific changes during COVID-19: spread of the disease; social distancing and the increase of deaths; and hospitalizations and overburdened hospital systems. It outlined the financial, emotional, social and mental toll this would take on society at large.

Among the recommendations was to address grief head-on:

“Approach difficult conversations directly and do not shy away from discussing emotions, grief, and overall patient and family distress during advance care planning conversations.”

Trauma and loss experts have long advised families to begin conversations early about advance care planning. The idea is to ease ourselves into more comfortable conversations about what to do when someone we love dies. More importantly, these conversations serve as an emotional buffer.

Caring Conversations

Life unexpectedly changed, leaving communities unsure how to grapple with uncertainty and at the same time inciting communal trauma of seeing folks die from COVID-19.

This brought to the surface ethical considerations that impact the grieving process. How do families broach the subject of advance care planning or Do Not Resuscitate (DNR) orders?

That’s where Terry Rosell comes in. Rosell is an ethics consultant at the Center for Practical Bioethics — one of the only three centers of its kind in the United States.

(Disclosure: the author’s spouse recently accepted a job at the center. The interview was arranged and conducted without their involvement.)

Rosell, who is also a faith leader, works closely with medical professionals and has seen firsthand how COVID-19 changed the way in which families and their doctors approach life and death discussions.

Terry Rosell
Terry Rosell is an ethics consultant and educator for the Kansas City University of Medicine and Biosciences and the University of Kansas Medical Center. He also was a theology professor.

“It’s hard enough to die. It’s hard enough to deal with our loved ones dying. So we ought to make it better,” he said.

End-of-life care is also known as hospice and palliative care, which emphasizes keeping the person comfortable while they’re dying. This is part of what Rosell teaches when he presents to physicians and hospital staff.

“The first ethics matter around end-of-life care is taking care of these patients. Just because they’re no longer curative, just because they’re no longer receiving aggressive care, we still have a duty to care for them,” he said. “We ought not to abandon dying patients, right?”

Another part of his job is educating on advance care planning, which ensures a person’s wishes are fulfilled. To some extent, this practice can curb the anxieties that come with anticipating loss.

But not everyone may know what hospice care or advanced care planning entails, which brings to the forefront the lack of visibility of end-of-life services. What the pandemic revealed was the need to address these conversations earlier on.

This helps with the processing part of loss, Rosell explained. Death is a part of life and grief follows suit.

“Any kind of significant loss has a grief response. It’s just part of being human,” he said.

Part of being human is finding comfort in some sort of routine, whether that be spiritual or a ritual. To that end, Rosell added: “Don’t give up on the grief rituals during COVID times. It helps us”

‘I don’t know who I am anymore’

For Oscar Orozco, being vulnerable is part of his job.

Orozco was a former medical social worker for Children’s Mercy, where he helped at-risk children. Today, he works as a grief counselor at Kansas City Hospice and Palliative Care. He echoes Rosell’s points on advance care directives to reduce the added stressors of planning while someone is on the decline.

Oscar Orozco
Oscar Orozco, a grief counselor at Kansas City Hospice and Palliative Care, sees grief as an unpredictable wave.

Even though he’s been in his new role for a short few months, the need for counseling folks through the process has never been more clear.

This year hardly anyone has been able to catch their breath. Orozco said he has talked to health care workers who are friends or clients and they said: “I can’t do this. It’s too much.”

Why?

“(There’s) death and traumatic death, and it’s different. This is not death that people could see coming,” Orozco explained.

Another piece of complex trauma is identity and how folks have struggled to come to terms with the absence of their loved ones.

“In our grief work, what I hear almost often is, ‘I don’t know who I am anymore’,” he said. “People don’t realize that it’s much more than just the death of that person, but it’s the death of … routines, of day-to-day activities and memories and parts of our lives really that died with that person.”

He sees grief like an ocean. It’s unpredictable but sooner or later it’s easy to know when the waves are coming. Managing grief is like swimming, he explained, and sooner or later, we learn how to stay afloat.

Oscar Orozco with his grandparents
Oscar Orozco (middle) lost his grandfather a few months ago. He’s since learned how to process the loss by channeling his grandfather’s love of food into his own life.

That’s how he feels about the recent death of his grandfather. He channels his emotions into cooking, which is how his grandfather expressed his love for the family. This physical act helps him emotionally recover and process.

Processing is key, he said, but that’s been on the back burner for so many during the pandemic. So he advises folks who have experienced loss to be active and deliberate in the grief journey. That could mean going to their burial site for a visit, or it could be to buy their favorite meal from their favorite restaurant.

Grief is an individual process. Orozco advises people to embrace the emotion whether it be by crying, journaling, hiking or traveling.

“You know, whatever it is that comes out naturally to express, but never cast it aside because we’re afraid of where it might lead,” he added.

“We need to talk about this. We need to have those conversations because as uncomfortable as they might be, they could be lifesavers for (us) to continue to live our lives in a meaningful way.”


5 Tips on Navigating Grief

  1. Grief can be complicated and hard to pinpoint. That’s OK. Acknowledge the feeling or sensation (it could be a stomach ache, fatigue, lack of focus or emotions such as profound sadness or anger) as a first step. Experts say there are several kinds of grief:
    1. Complicated grief: When loved ones ruminate about the cause of death, worry about the consequences, feel guilty and display avoidant behaviors, such as denial. Around 7% of bereaved people will experience this kind of grief.
    2. Disenfranchised grief: When a loved one loses a person or child. It “can occur when families are unable to grieve with normal practices of social support and rituals in burial and funeral services,” according to the NIH.
  2. Asking for help to begin the grieving process is OK. “Grief counseling can help,” said Terry Rosell at the Center for Practical Bioethics. “Ministers, clergy, rabbis, priests, there are a lot of people who can help with grief counseling (for free).” You can find grief counselors at your local hospice organizations and mental health professionals who specialize in loss — for good reason. One example is the Solace House Center for Grief and Healing.
  3. Communication is powerful. Talk openly with family members, chosen family or biological relatives, or friends about their wishes before death — sick or not. Studies on the psychological impact of meaningful conversations — or saying “goodbye” — among family members of cancer patients show it helps with depression and complicated grief.
  4. Engage in activities that remind you of your loved one. This can also be characterized as play therapy if your loved one was an artist, which eases the transition from grief to acceptance. “I very much believe that spiritual practices or just rituals is how we get in tune with what our body is telling us about the loss we experienced,” said therapist Meagan Howard.
  5. Cry. Therapists advise sitting in a safe, quiet place or with a support network to embrace the feeling and release. This is good both physically and psychologically. Crying is the body’s “release valve,” according to Dr. Judith Orloff, who wrote: “After crying, our breathing, and heart rate decrease, and we enter into a calmer biological and emotional state.”

Complete Article HERE!

We all have to die.

Why have we forgotten how to die well?

In a wise and compassionate book, an American physician offers advice on approaching the end of our days.

by Jose Bufill

The Lost Art of Dying: Reviving Forgotten Wisdom
by Lydia Dugdale, 2020, 272 pages

Hardly a day passes without new descriptions of killing and dying — both fictional and factual — invading our consciences, and yet so many of us still choose to postpone consideration of our own death. The practical neglect of the obvious fact of our mortality seems to be a distinctively post-modern and Western phenomenon that has become an important source of suffering and despair.

This is the central irony that Dr Lydia Dugdale identifies in The Lost Art of Dying and the contradiction she seeks to resolve. The consideration of death is the beginning of wisdom, so why do we live without it?

She writes from the perspective of an academic internist, who — in the course of her work with the sick — has identified manifestations of a kind of malady that affects both patients and their doctors. Its symptoms may be subtle and vary widely, but they rise to the surface acutely when mortality imposes itself: families who insist on repeated attempts to resuscitate dying relatives, doctors who offer patients treatment with no hope of real benefit, neglected elderly sick who die lonely and alone, occasional requests for help in dying. Fortunately, these accounts are not necessarily the norm, but neither are they rare events. There are other experiences with persons who die “well”: well accompanied, at times joyful, and grateful for the time their illness has provided to reflect and make amends.

The examples offered by Dr Dugdale of people facing death resonate well with the observations of Dr Balfour Mount, the Canadian surgeon who became a palliative care physician after his own cancer diagnosis. Dr Mount’s work identified the character traits of patients who experienced either persistent anguish and existential distress from their illness, or those who were able to discover wholeness and integrity in it.

He found that traits such as a sense of connection to others and meaning in life, the capacity to find peace in the present moment, the experience of a non-adversarial connection to the disease, and the ability to choose one’s attitude before adversity rather than to exert control over it were all associated with healing through illness: a good death.

Clearly, achieving this perspective on death is hard work that should not be left to the very end.

Over the course of nine chapters, the journey with Dugdale begins with “Death”, ends in “Life” and pivots on the chapter entitled “Fear”. For Dugdale, it’s the “fear of death” that explains the varied symptoms of despair demonstrated by patients and doctors today. When we are afraid, the reaction to “fight” or “flight” takes over. We “fight” by showing anger, directed at times toward family, professionals attempting to help, or the impersonal “system” surrounding us. Anger may express sadness over lost goals and frustrated plans, or may become a means to “endure”, to hang on, to survive at all costs.

Using the language of war to refer to our engagement with illness reflects the same fearful attitude toward death:

“His grandfather was battling pneumonia. My friend is a cancer survivor. I’m going to beat this infection. She’s a fighter; she’s going to kick this disease. And so forth. We march forward, as determined as military generals, reminding our loved ones and ourselves that there is no reason to fear the enemy. We have the strongest health-care system of all time; no disease can conquer us.”

Among the more frequent expressions of “flight” in response to imminent death, is the attempt to control its time and circumstances. Assisted suicide provides an escape for those who do not wish to fight death but still want control. Perceptively, Dugdale describes the existential threat of a life-threatening illness in the following terms:

“When the natural world threatens, we take refuge in homes and cities. But when sickness threatens, we become homeless. Our own bodies evict us as if we were no longer welcome. Our frames fail, our minds grow dim. Our stamina falters, our work suffers. This, in turn, threatens our carefully constructed fortresses of security. As our physical space closes in, we stop being able to appreciate the beauty of the world. (…) Sickness makes our bodies inhospitable. But it also estranges us from our ideological framework. It is no longer enough to work hard. Ambition seems foolhardy, and prestigious careers offer false salvation. Stripped of our illusions, we find ourselves existentially isolated in our brokenness — perplexed in body and spirit.”

To escape the perplexity, one should learn to abandon our flawed subjective appraisals of what is “important” and attend to the immediate reality of one’s new circumstances. To die well becomes easier if we grapple early and often with existential questions rather than avoid them.

In Dugdale’s account, modern medicine is incapable of offering much help. We have become purveyors of hope through pills and infusions: “providers” rather than “healers”. What is needed instead is common sense: to recover a “lost art” based on the simple premise that people go somewhere forever after they die, and so they should live each day in a way that would help them look forward to a happy transition.

Written manuals offering practical advice to help the dying prevailed for 500 years throughout the West as a popular literary tradition. The “Ars moriendi” — we learn — began during the European “black death”, probably the nastiest and most persistent pandemic among the many that swept through the peoples of antiquity and the Middle Ages. Two-thirds of the European population died horribly from a disease they could not escape and before which they were powerless. The stench of death was everywhere. And so everyone was directly affected and engaged.

In response, a thoughtful and systematic approach to help the dying was proposed for the first time at the Council of Constance (1414 to 1418) by Jean Charlier Gerson, Chancellor of the University of Paris. The intent was to offer practical advice for use at the bedside.

The result was an explosion of self-help manuals advising those who cared for the dying. They identified the most common temptations encountered at the end of life — disbelief, despair, impatience, pride and avarice — and measures to relieve them. They suggested prayers for the dying; acknowledged that the death of an individual affected and so involved the entire community; and emphasized the need to prepare for death long before it happened. And back then — as today — it could happen quickly with little warning.

So what happened about 100 years ago that led to the death of the art of dying?

We could call it a slowly progressive, insidious pandemic of “affluenza”: the malaise that results from relying entirely on the pursuit of material wealth to achieve happiness. Scientific and industrial revolutions and the prosperity that gradually followed meant that human beings were less subject to the whims of nature. Food and clothing became easy to acquire and replace. Adequate shelter, running water and electricity were eventually assumed by almost everyone.

No mystery or threat nature could present seemed beyond the reach of human reason. Once common, often fatal infectious diseases were cured with antibiotics — beginning with the discovery of penicillin in 1928 — the average human lifespan more than doubled, at least in developed countries. And the trend toward longer life spans is expected to continue. Today, we can speak without exaggeration of cures for many cancers. The conquest of death — our mortal enemy — seems within reach.

And thus medicine becomes a means to rescue the doomed. Replacement organs, dialysis machines and ventilators are like life vests for the drowning.

“Doctors love to be rescuers, heroes who descend from on high to fight evil disease and liberate patients in distress. It is part of our common mythology. The bioethicist Howard Brody says that this ‘rescue fantasy is a power trip: it envisions the physician having the power to snatch the patient from the jaws of death.’ (…) For their part, patients seek a rescuer to release them from their life-destroying maladies. (…) The physician’s compulsion to rescue fuels the patient’s burning desire to be rescued, which again stokes the doctors rescue fantasy.”

A host of forces — cultural, economic, technological — have conspired to medicalize the dying process. Fewer people today die at home surrounded by loved ones. Many die in sterile, standardized institutions run by strangers, at times clinging to false hope of survival that medicine is not able to satisfy.

So is death annihilation or is it just a short nap after which we awaken in the arms of Love? That is the question.

Dugdale contends that our best chance to resolve the dilemma is by careful, persistent reflection on the meaning and purpose of life: “the art of dying is really the art of living.”

This insightful book accurately describes the widespread dysfunction that occurs when we are distracted from the consideration of our own mortality. It would be great if Dr Dugdale’s next book might offer a specific, practical road map — a modern Ars moriendi — to help us help the dying.

Complete Article HERE!

Questions of Life and Death During the Coronavirus Pandemic

— A Medical Anthropologist’s View

By Isono Maho 

Cultural anthropologist Isono Maho left academia last year and set out as an independent-minded commentator to question the conventional wisdom influencing views on to living and dying. We spoke to her about the competing priorities of “saving lives” and social connections during the COVID-19 pandemic and the importance of listening to the reservations many people feel about the impersonal approach of modern medicine.

The Right to Say Goodbye

As the coronavirus pandemic has raged around the world, how many people have died alone in isolated hospital wards, separated from their loved ones? How many people have suffered the anguish of not being allowed to visit a family member to share a few last moments together? Most people have accepted this tragedy as an unavoidable aspect of the ongoing crisis. But is it really necessary or desirable to prioritize the risk of infection ahead of all other concerns?

Medical anthropologist Isono Maho argues that medical authorities have been far too ready to ban hospital visits for patients in extremis. She admits there are good reasons why a hospital might restrict visits to coronavirus patients, not least of which is the risk of a Covid cluster breaking out. “Visitors will likely want to talk to and touch their loved one,” she explains. “This increases the likelihood the infection will spread, and it’s understandable why hospitals have chosen to ban visitations.” Even so, she questions whether it is appropriate for the same restrictions to be placed on patients not suffering from the coronavirus. “It raises the question whether the risk really justifies keeping each and every dying patient from their family members and forcing them to spend their last days alone without a chance to say goodbye.”

Isono argues family members have a right to be close to relatives who are approaching the end of life, and that current medical practices unnecessarily deprive people of the opportunity to gather and say farewell to loved ones in their final days.

“Words often fail when a family member is approaching the end of their life,” Isono observes. “Instead, communication becomes tactile. It doesn’t happen overnight, though, but is a gradual process, taking families time to develop a sense of how it will work for them. She notes that even if family members are allowed to visit in the last few days before a person dies, the separation up to then has deprived them of the chance to observe and process the physical changes in their loved one. “To be suddenly confronted by these can be overwhelming. In many cases, such final visits are extremely upsetting and can even hamper the mourning process.”

Families have generally accepted the restrictions on visitations during the pandemic, seeing them as unavoidable. Still, Isono stresses that people only have one chance to say goodbye to a dying family member. “We have to ask whether it is really right for hospitals to deprive families of this important rite. Does the objective of preventing further infections really take precedence over everything? My feeling is that there is still room for debate.”

Isono says that such restrictive measures to minimize COVID-19 infections have been framed as necessary to “save lives,” a correlation she is uncomfortable with. “It’s become akin to a moral doctrine that no one is even allowed to question.”

Modern Medicine and Death

Isono started out studying exercise physiology with the aim of becoming a physical trainer, but says she struggled to come to terms with the approach to human health in the natural sciences, which she found treated people as mere things to be studied. “The tendency is to reduce the human body to numerical data,” she argues. “Just more grist for the analytic mill.” Despite her doubts, she traveled to the United States for further studies. It was there that she discovered cultural anthropology. “I think the main appeal of the field for me was the way it tries to find deep, philosophical explanations for complex phenomena in what seem to be insignificant everyday events.”

What made the field fundamentally different to her is its grounding in fieldwork. “A lot of other academic disciplines use abstract ideas from the outset,” she says. “Cultural anthropology, on the other hand, seeks to develop ideas about life based on observations of mundane, everyday phenomena.” She points to people in Japan rushing out to buy toilet paper and basic foodstuffs before the government declared the first state of emergency in April 2020 as an example. “What social factors and what kind of information that was available drove that behavior? I think just about anyone would find the field fascinating—the questions it asks are so closely connected to daily life.”

Attitudes to life and death are one of the major focuses of cultural anthropology. The field also provides rich resources that can serve as “tools” for helping Isono to articulate her misgivings about modern science and medicine, another major reason why she chose to change the focus of her studies.

“The field has built up a vast storehouse of information on how different cultures and ethnic groups deal with death,” she explains. “In many cultures, a so-called good death is not simply a matter of living as long as possible. It is seen instead as part of the cycle of life and determined by connections between the living and the dead. There is a kind of universality in ideas like this. By contrast, modern medicine tends to prioritize longevity as something desirable in its own right. The value of life is converted into numbers and ‘evidence.’ My misgivings about this approach stem in part from the tendency to discount all the many cosmologies devised by diverse ethnic groups that connect the living and the dead.”

Blaming Everything on the Pandemic

One focus of Isono’s research is the clinical settings where healthcare is provided. She has interviewed numerous doctors, nurses, and caregivers in an attempt to understand the opinions of front-line healthcare workers—particularly those whose roles might go unrecognized. By talking to these people, Isono wanted to learn more about how healthcare provisions actually work and how they might be improved.

“Many of the individuals I spoke with expressed reservations about the way things are run,” states Isono. “For instance, they might see an elderly patient, bed-ridden and hooked to an artificial respirator for weeks on end, and wonder about the tendency of modern medicine to prioritize life support above all else.” She points out that many healthcare workers struggle with these doubts, but typically keep them to themselves. “My focus is tapping into the potential of cultural anthropology to recognize the value in these doubts and put them to positive use.”

Isono says that the close proximity of medical workers and caregivers to their patients can lead to uncomfortable feelings regarding the way that treatment plans are decided according to the convenience of the hospitals and other authorities. “I think their misgivings about this approach to medical care contain the seeds of a new perspective that can bring us closer to the real concerns of patients and their families, potentially leading to a better way of doing things.”

During the pandemic, it has become common for the media to highlight the harsh conditions healthcare workers labor under. Isono, however, says that not all medical workers like the image being portrayed of them as heroes risking their lives to help others. “Quite a few of people have their doubts about at least some aspects of the narrative,” says Isono. “They say they don’t really need illuminations of landmarks like the Tokyo SkyTree or fly-overs by the Blue Wave fighter planes as ways of showing appreciation and support. And quite a few people are uncomfortable with the way in which everything seems to center on preventing infection at all costs.”

Isono is skeptical about the tendency to blame the structural problems of the Japanese healthcare system for worsening the coronavirus crisis. The media is quick to pounce on issues like bed shortages for COVID-19 patients and the large numbers of nurses quitting their jobs. These problems, she stresses, are nothing new. “Poor coordination among hospitals and clinics and chronic staff shortages, including large numbers of nurses leaving the profession, predate the current crisis. I think the media should take more care in pointing this out to people. Misunderstanding the situation and blaming everything on the pandemic will only make it more difficult to improve the areas that need fixing. If we’re not careful, nothing will change and the problems will still be here after the current crisis is over.”

Correctly Assessing Risk

Over the past year or more, the numbers of new coronavirus cases and fatalities have become a fixture on the daily news. Isono points out that Japan is one of only a few countries that has managed to keep the number of infections relatively low—even though the government has not introduced any impressive policy measures, or used extraordinary legal powers to contain the crisis.

In terms of overall fatalities, the number of deaths from all causes actually fell in 2020 for the first time in 11 years. “In this sense, it’s fair to say that lives are being protected,” says Isono. “But the public and the media typically don’t pay much attention to this fact. They prefer to dwell on the risks of infection and the problems with government policies. The fear of the virus is leading some households to forego support services for seniors and others, including visits from nurses and caregivers. Often, the result is that the rest of the family becomes exhausted, exacerbating the frailty of the person requiring care.”

Isono points out that the unfamiliarity of the pandemic has meant that people are easily swayed by misleading information that fans anxieties about the risk of infection. “Take the flu as an example,” she says. “Most people have personal experience of the illness and know if they’re sick or not. If they come down with the flu, they might take a week or two off work to recuperate. At schools, classes might be cancelled for a few days if too many students get sick. But with the coronavirus, people lack the real-life context that would enable them to assess the risk accurately.” She notes that the constant barrage of news reports telling the public how quickly case numbers are escalating distorts the situation. “In reality, the overwhelming majority of people have not been infected. and the number of serious cases is even smaller still. But there is so much negative information that it becomes difficult for people to respond in a level-headed manner.”

Isono admits that even with vaccinations, the risk of infection and infecting others will not go away completely. “We will probably have to learn to live with the coronavirus for a long time to come. This makes it important to work to control excessive fear and panic over this one particular disease—both on the part of the media and of the people consuming news.” She hopes that society will move in a direction that helps people to mitigate their risk of contracting the disease while permitting individuals to carry on with their lives in a fashion that allows for other important considerations.

Learning to Live with Uncertainty

No one denies the importance of taking reasonable efforts to avoid falling ill. But Isono says that the public needs broaden its focus from trying to live as long as possible to think more deeply about life and death.

“All of us will die one day,” she declares. “Even so, we try to avoid thinking seriously about death. As social animals, we humans see connections with other people as an important part of life. However, individuals are giving up the spiritual nourishment they get from social contacts out of a fear that they might catch the virus.”

She says that living in a community means recognizing other’s individuality and accepting unpredictability into our lives. These uncertainties increase as a person approaches death, and it is family and friends who take on the responsibility of accompanying them in their final days. “In an environment of excessive risk control, though, people are stripped of the opportunity to face up to uncertainties and deal with them together. Their chance to find a way to come to terms with them is taken away from the start.”

Isono warns that there is a risk that even our imaginations might be controlled by a constant flood of information. “I sometimes worry that the deluge of information is affecting our emotional state. I’m terrified by the idea of people being so overwhelmed by the information that is broadcast at them that even their imaginations fall victim to it. Being moved and touched by something is personal—these things should be left to the freedom of the individual.” She says she would like people to think more about the manipulative structure of a system that feeds information to the public in a very one-directional way. “I think we need to think more about the intentions of those who are broadcasting this information, and what it means for us on the receiving end.”

Broadening Shared Spaces

The tendency to prioritize preventive medicine is only likely to increase after the current crisis subsides, which is why Isono says she intends to continue using a cultural anthropology approach to questioning accepted views.

“I think we are entering an age in which statistics-based ethics and value systems that prizes longevity for its own sake will become even more dominant. Life’s choices will be boiled down to the health risks involved and everything will be shown in figures.” She warns that this presents a slippery slope for humanity. “I think more than a few people are uncomfortable with such an approach, lay people as well as healthcare workers. I want to get a message out to such people and help create a platform for thinking together about what it means to live our lives, based on real-life examples that are easy to relate to.”

Isono feels strongly that people should not let go of their right to decide for themselves about what it means to live. “One recent trend in medicine is the practice known as social prescribing, whereby doctors refer patients who are cut off from society to a range of non-medical social services. Of course, it’s only proper for a doctor to notice if a person might be struggling with loneliness and isolation and try to do something to alleviate that situation. But I think those of us outside the medical system also have a right to express our doubts about the way it is done. Have we really reached a stage where we can’t forge social connections without a prescription from a specialist? I can’t help feeling uncomfortable with the expectation that we should simply sit back and gratefully endorse the idea of outsourcing even our social connections to experts.”

In 2020, Isono left her post as an associate professor and launched a series of online seminars on the subject of exchanges with others. Around 300 people of all ages and backgrounds, including medical and social workers as well as teachers and students, have participated. Participants say the thought-provoking discussions and the opportunity to exchange views with people from different walks of life deepened their understanding of issues. In June 2021, a second series of seminars will start under the theme of developing the power to listen.

“Cultural anthropology has a power to push back against conventional wisdom,” Isono asserts. “There is a version of what is correct and acceptable that is put out by people in authority that everyone is supposed to go along with. We still need to question this accepted wisdom and ask if it leads us in a direction we want to go. The discipline can encourage people to express their doubts and perhaps put a brake on the tendency to go along with the loudest voice in the discussion. At the same time, it’s not caught up in making easy judgements about right and wrong. In that sense, I think the field can help to widen the space that we share with others. Through my activities, I want to do what I can in my own little way to bring this attractive side of the field to as many people as I can. That’s my ambition.”

Complete Article HERE!

Aiding Her Dying Husband

— A Geriatrician Learns the Emotional and Physical Toll of Caregiving

Dr. Rebecca Elon’s life took an unexpected turn in 2013 when she noticed personality changes and judgment lapses in her husband, Dr. William Henry Adler III. He was eventually diagnosed with frontotemporal dementia with motor neuron disease and died in February.

By Judith Graham

The loss of a husband. The death of a sister. Taking in an elderly mother with dementia.

This has been a year like none other for Dr. Rebecca Elon, who has dedicated her professional life to helping older adults.

It’s taught her what families go through when caring for someone with serious illness as nothing has before. “Reading about caregiving of this kind was one thing. Experiencing it was entirely different,” she told me.

Were it not for the challenges she’s faced during the coronavirus pandemic, Elon might not have learned firsthand how exhausting end-of-life care can be, physically and emotionally — something she understood only abstractly previously as a geriatrician.

And she might not have been struck by what she called the deepest lesson of this pandemic: that caregiving is a manifestation of love and that love means being present with someone even when suffering seems overwhelming.

All these experiences have been “a gift, in a way: They’ve truly changed me,” said Elon, 66, a part-time associate professor at Johns Hopkins University School of Medicine and an adjunct associate professor at the University of Maryland School of Medicine.

Elon’s uniquely rich perspective on the pandemic is informed by her multiple roles: family caregiver, geriatrician and policy expert specializing in long-term care. “I don’t think we, as a nation, are going to make needed improvements [in long-term care] until we take responsibility for our aging mothers and fathers — and do so with love and respect,” she told me.

Elon has been acutely aware of prejudice against older adults — and determined to overcome it — since she first expressed interest in geriatrics in the late 1970s. “Why in the world would you want to do that?” she recalled being asked by a department chair at Baylor College of Medicine, where she was a medical student. “What can you possibly do for those [old] people?”

Elon ignored the scorn and became the first geriatrics fellow at Baylor, in Houston, in 1984. She cherished the elderly aunts and uncles she had visited every year during her childhood and was eager to focus on this new specialty, which was just being established in the U.S. “She’s an extraordinary advocate for elders and families,” said Dr. Kris Kuhn, a retired geriatrician and longtime friend.

In 2007, Elon was named geriatrician of the year by the American Geriatrics Society.

Her life took an unexpected turn in 2013 when she started noticing personality changes and judgment lapses in her husband, Dr. William Henry Adler III, former chief of clinical immunology research at the National Institute on Aging, part of the federal National Institutes of Health. Proud and stubborn, he refused to seek medical attention for several years.

Eventually, however, Adler’s decline accelerated and in 2017 a neurologist diagnosed frontotemporal dementia with motor neuron disease, an immobilizing condition. Two years later, Adler could barely swallow or speak and had lost the ability to climb down the stairs in their Severna Park, Maryland, house. “He became a prisoner in our upstairs bedroom,” Elon said.

By then, Elon had cut back on work significantly and hired a home health aide to come in several days a week.

In January 2020, Elon enrolled Adler in hospice and began arranging to move him to a nearby assisted living center. Then, the pandemic hit. Hospice staffers stopped coming. The home health aide quit. The assisted living center went on lockdown. Not visiting Adler wasn’t imaginable, so Elon kept him at home, remaining responsible for his care.

“I lost 20 pounds in four months,” she told me. “It was incredibly demanding work, caring for him.”

Meanwhile, another crisis was brewing. In Kankakee, Illinois, Elon’s sister, Melissa Davis, was dying of esophageal cancer and no longer able to care for their mother, Betty Davis, 96. The two had lived together for more than a decade and Davis, who has dementia, required significant assistance.

Dr. Rebecca Elon’s sister Melissa Davis (right) was the primary caretaker for their mother, Betty Davis, for the past 10 years. But new living arrangements had to be made for their mother when Melissa Davis died of esophageal cancer in May 2020.

Elon sprang into action. She and two other sisters moved their mother to an assisted living facility in Kankakee while Elon decided to relocate a few hours away, at a continuing care retirement community in Milwaukee, where she’d spent her childhood. “It was time to leave the East Coast behind and be closer to family,” she said.

By the end of May, Elon and her husband were settled in a two-bedroom apartment in Milwaukee with a balcony looking out over Lake Michigan. The facility has a restaurant downstairs that delivered meals, a concierge service, a helpful hospice agency in the area and other amenities that relieved Elon’s isolation.

“I finally had help,” she told me. “It was like night and day.”

Previously bedbound, Adler would transfer to a chair with the help of a lift (one couldn’t be installed in their Maryland home) and look contentedly out the window at paragliders and boats sailing by.

“In medicine, we often look at people who are profoundly impaired and ask, ‘What kind of quality of life is that?’” Elon said. “But even though Bill was so profoundly impaired, he still had a strong will to live and retained the capacity for joy and interaction.” If she hadn’t been by his side day and night, Elon said, she might not have appreciated this.

Meanwhile, her mother moved to an assisted living center outside Milwaukee to be nearer to Elon and other family members. But things didn’t go well. The facility was on lockdown most of the time and staff members weren’t especially attentive. Concerned about her mother’s well-being, Elon took her out of the facility and brought her to her apartment in late December.

For two months, she tended to her husband’s and mother’s needs. In mid-February, Adler, then 81, took a sharp turn for the worse. Unable to speak, his face set in a grimace, he pounded the bed with his hands, breathing heavily. With hospice workers’ help, Elon began administering morphine to ease his pain and agitation.

“I thought, ‘Oh, my God, is this what we ask families to deal with?’” she said. Though she had been a hospice medical director, “that didn’t prepare me for the emotional exhaustion and the ambivalence of giving morphine to my husband.”

Elon’s mother was distraught when Adler died 10 days later, asking repeatedly what had happened to him and weeping when she was told. At some point, Elon realized her mother was also grieving all the losses she had endured over the past year: the loss of her home and friends in Kankakee; the loss of Melissa, who’d died in May; and the loss of her independence.

That, too, was a revelation made possible by being with her every day. “The dogma with people with dementia is you just stop talking about death because they can’t process it,” Elon said. “But I think that if you repeat what’s happened over and over and you put it in context and you give them time, they can grieve and start to recover.”

“Mom is doing so much better with Rebecca,” said Deborah Bliss, 69, Elon’s older sister, who lives in Plano, Texas, and who believes there are benefits for her sister as well. “I think having [Mom] there after Bill died, having someone else to care for, has been a good distraction.”

And so, for Elon, as for so many families across the country, a new chapter has begun, born out of harsh necessities. The days pass relatively calmly, as Elon works and she and her mother spend time together.

“Mom will look out at the lake and say, ‘Oh, my goodness, these colors are so beautiful,’” Elon said. “When I cook, she’ll tell me, ‘It’s so nice to have a meal with you.’ When she goes to bed at night, she’ll say, ‘Oh, this bed feels so wonderful.’ She’s happy on a moment-to-moment basis. And I’m very thankful she’s with me.”

Complete Article HERE!

Seven Keys to a Good Death

By Charles Garfield

Some years ago, I helped tend to a friend of mine who was dying of cancer. Near the end of his life, he had reached a place of equanimity around dying.

But instead of honoring his wishes for a peaceful death, his doctors ordered aggressive chemotherapy treatment, which did nothing to halt his cancer. The treatments caused him immense suffering, rendering him unable to sleep, eat, or converse with family and friends as he was dying.

Unfortunately, deaths like my friend’s are not that rare. Though more than 70 percent of Americans surveyed say they want to die in their own home without unnecessary procedures to extend their lives, 50 percent of all deaths occurs in facilities away from home. Of those, 40 percent occur in ICU’s, where physicians are charged with doing everything they can to keep a person alive, regardless of the outcome.

Sometimes, the quest to avoid death can seem extreme, like in the much-publicized cases of Terry Shiavo and Marlise Munoz, where unnecessary life-extending procedures created exorbitant medical bills and emotionally burdened their loved ones.

But, if Shiavo and Munoz are examples of a bad death, is there any better way? Is a “good death” just an oxymoron? Or can the experience of death be far more positive—an opportunity for growth and meaning?

Listening to dying people

These are questions that I first began to consider when I was a young psychologist at the oncology unit at UCSF in the mid-1970’s. At that time, I was the first and only mental health worker on the staff on a 40-bed unit. Modern palliative care was not widely understood or employed yet, and hospice care was not as readily accessible as it is now. My job was to help these patients with whatever emerged psychologically around their deaths.

And, there was a lot going on psychologically which wasn’t being attended to. The physicians and nurses in our unit were talented, skilled, well-intentioned people. But they focused on staving off death at all costs.  Their training gave no guidance on how to provide their patients with the conditions for a good death—one that allowed patients to come to terms with their life and find peace and wellbeing at the end.

Since then, I’ve worked with hundreds of dying people. To help combat the lack of trained support staff, I founded Shanti—a peer counseling program that provides compassionate, trained listeners to help patients and their families through serious illness and the transition of dying. Shanti volunteers have supported many people facing death to do so with grace through their presence and compassion.

What I’ve learned through my experience is that what people most need on their deathbed is to be heard—to have their wishes considered and, whenever possible, fulfilled. But even with Shanti’s success, and the proliferation of palliative care programs and hospices around the nation, there are still many dying Americans who don’t get that chance. Here are seven ways to help create the conditions for a good death.

How to die well

1. Experience as little pain as possible.

When I talk of being pain-free, I mean physically, psycho-socially, and spiritually pain-free. Nowadays, there are medications that can manage most people’s physical pain and make them far more comfortable, and these should not be denied to any patient. Spiritual pain can occur, too. In fact, I have sat with several clergy who had crises of faith on their deathbeds. Sometimes, easing spiritual pain can be accomplished by the presence of a person of faith or readings from sacred texts; other times, it’s better to have someone who can engage in spiritual questioning. Either way, spiritual issues are common at the end of life, and they need attention.

2. Recognize and resolve interpersonal conflicts.

We must also recognize psycho-social pain, the residue of life’s unresolved conflicts with other people. There are almost always interpersonal issues within families, and sometimes between close friends, when one is dying—people who’ve become estranged, “I love you”’s that were never expressed, and more. Ira Byock, a palliative care doctor, wrote in his book, The Four Things That Matter Most, that there are four basic messages a person needs to communicate at the end of life:

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

These, I think, are a good start. A good death creates a space for people to say those words.

3. Satisfy any remaining wishes that are consistent with their present condition.

Some people want to live long enough to go to a grandson’s graduation, to see a book published, to see a cousin they were close to who lives 3000 miles away. But, be careful that these are the wishes of the patient and not just the patient’s significant others. There’s a difference between a good death and an appropriated death—one that’s stolen from the dying person by other forces, including the agenda of close family members.

4. Review their life to find meaning.

There are two main ways that people on their deathbeds find meaning: in the recognition of all of the people they have loved and who have loved them, and in the work that they’ve done that has contributed to the greater good. In some cases, contributory work will be obvious; in others, it may be less so. But, helping the dying to articulate what brought meaning to their lives will help them feel more at peace with their death.

5. Hand over control to a trusted person, someone committed to helping them have the kind of death they desire.

The whole issue of deathbed conversations—asking a person what he needs or wants—is very important. What does the dying person want? How can they get that? Is it reasonable? Sometimes it’s not reasonable: A friend’s dying mother wanted help in ending her own life; well, that wasn’t going to happen. Sometimes you can have the conversation without acting on it, and any conflicts or issues can be addressed.

6. Be protected from needless procedures that serve to only dehumanize and demean without much or any benefit.

Emergency rooms, ICU’s, and 911 are set up to preserve life and are not typically supportive of the conditions for a good death. If a person is suffering tremendously, there may be cause to get emergency help; but for most situations, when you throw a person into the larger healthcare system, the prevention of death becomes the imperative, and that can serve to increase suffering for the dying person. One has to be very persistent and clear to avoid procedures that are unwanted—to insist on palliative or hospice care, instead. It can help to have an advanced directive or a “physician-orders for life sustaining treatment” in writing and communicated to loved ones; but often a person also needs a vocal advocate—a family member, friend, or volunteer caregiver.

7. Decide how social and how alert they want to be.

Sometimes a dying person wants solitude; sometimes he or she wants friends and family around. Whatever the case, the dying person should decide. And, though trickier, dying people should be allowed to decide how much consciousness they want. Some people want to sleep all of the time; others want to be alert as much as possible. Once these wishes are known, an advocate can help make that happen.

A good death is possible

People who are dying should be treated as living human beings. They will have good and bad days. The important thing for caregivers is to be mindfully present. The poet John Milton wrote, “They also serve who only stand and wait.” We are so addicted to action that it may feel like we’re doing nothing if we just sit by someone’s deathbed. But it’s often very important to bear witness and listen or hold a hand.

The potential for growth through dying is definitely there. It doesn’t mean it will automatically happen, though. Death can bring out our goodness—our capacity to transcend, love, and grow—or it can bring out our capacity to hate, create enemies, and deteriorate psychologically. To help promote the former, we should create sacred spaces for those who are dying so that they can benefit most from the experience. If we know the conditions for a good death, we are more apt to prepare ourselves and the ones we love to die with dignity and the sense of a life well-lived, rather than treating death as a calamity requiring a trip to the hospital.

A good death is no oxymoron. It’s within everyone’s realm of possibility. We need only realize its potential and prepare ourselves to meet it mindfully, with compassion and courage.

Complete Article HERE!

The Secret to Happiness?

Thinking About Death.

In an excerpt from his new book, journalist Michael Easter travels to Bhutan to learn about how confronting death head-on can lead to a more fulfilled life

By Michael Easter

In his new book, The Comfort Crisis, Michael Easter investigates the connection between modern comforts and conveniences and some of our most pressing problems, like heart disease, diabetes, depression, and a sense of purposelessness. Turns out, engaging with a handful of evolutionary discomforts can dramatically improve our mental, physical, and spiritual wellbeing. One of those fruitful discomforts? Thinking about dying.

Death has always been the most uncomfortable fact of life. And as modern medicine, comforts, and conveniences have given us more years, we’ve seemingly become less and less comfortable with life’s only guarantee. Roughly seven out of ten Westerners say they feel uncomfortable with death. Only half of people over 65 have considered how they want to die.

After someone dies we’re encouraged to stay busy to take our mind off it. A dead person’s body is immediately covered and sent to a mortician where it is prepared to look as youthful and alive as possible before one final, hour-long viewing, after which it is dropped into the ground of a perfectly manicured cemetery.

But new research is showing that death awareness is good for us. For example, scientists at the University of Kentucky had one group of people think about a painful visit to the dentist and the other contemplate their death. The death thinkers afterward said they were more happy and fulfilled in life. The scientists concluded, “death is a psychologically threatening fact, but when people contemplate it, apparently the automatic system begins to search for happy thoughts.”

The country of Bhutan has made it part of its national curriculum to think about death anywhere from one to three times daily. The understanding that we’re all going to die is hammered into Bhutan’s collective conscience, and death is part of everyday life. Ashes of the dead are mixed with clay and molded into small pyramids, called tsa tsas, and placed along heavily trafficked areas like roadsides, in window sills, and public squares and parks. Bhutanese arts often center around death; paintings of vultures picking the flesh from corpses, dances that reenact dying. Funerals are a 21-day event where the dead body “lives” in its house before being slowly cremated over fragrant juniper trees in front of hundreds of friends and relatives.

All of this death is doing anything but bumming out the Bhutanese. Despite being ranked the 134th most developed nation on earth, extensive studies conducted by Japanese researchers have found that Bhutan is among the world’s 20 happiest countries. But what you probably don’t know is how morbidity contributes to their feelings of happiness. And neither did I.


After four flights across 48 hours, 14 time zones, and 9,465 miles, I stepped off an aging 737 onto a runway 7,333 feet above sea level at Bhutan’s Paro International Airport. THE thin air filled my lungs as the sun illuminated the surrounding snow-capped Himalayan foothills. I was there to find out how Bhutan’s uncomfortable intimacy with death might improve my life—and maybe yours too.

I’d arranged to meet with a host of characters, including government leaders who study happiness in Bhutan. But the most compelling men I met with were both leaders in the Buddhist faith.

The first was Khenpo Phuntsho Tashi. He knows as much about death as a living human can. He’s one of Bhutan’s leading Buddhist thinkers, and he’s found a niche in the study of death and dying. The Khenpo is the author of a 250-page book called “The Fine Art of Living and Manifesting a Peaceful Death.” And unlike many of Bhutan’s monks, the Khenpo is intimately familiar with what ails people in the West. Before he dedicated himself to his spiritual practice he lived in Atlanta, with a girlfriend who was the Dalai Lama’s translator. He, I thought, would be able to get to the heart and consequences of the West’s fear of death.

My boots kicked up a low-hanging dust as the Khenpo’s cliff-side shack came into view. It was wooden, tin-roofed, and in the shadow of Dakarpo. Dakarpo is an ancient Buddhist monastery built on an outcropping that overlooks the Shaba valley. Fifteen or so people walked clockwise around the white, fortress-like monastery. They chanted as they carefully stepped around its rocky terrain. Bhutanese mythology says a person will be cleared of all of his or her sins by circumventing the Dakarpo 108 times. Each lap takes roughly 25 minutes. The full 108 takes most pilgrims about four full days, a relatively small fee for absolute absolution.

The scent of burning incense crawled into my nose as I peeled back the heavy orange embroidered silk drape leading into the Khenpo’s room. Light was entering the room through a hazy window, catching smoke. It obscured a small altar anchored by a three-foot statue of the Buddha. Around it were smaller Buddhist statues, photographs, and burning sticks of champa. Through the smoke I saw the profile of a face. It was the Khenpo.

“Welcome,” said the Khenpo, his voice a heavily accented butter. I bowed and sat. “You want to talk about death?”

I nodded. “Hmmmm,” he said. His chest slowly rose and fell in the silence.

“You Americans are usually ignorant,” he said, using a word often seen as an insult in the United States, but that by definition means “lacking awareness.” In Bhutan and other Buddhist countries, “ignorance” is the rough English translation of “Avidyā.” That’s a Sanskrit word that means having a misunderstanding of the true nature of your reality and the truth of your impermanence. “Most Americans are unaware of how good you have it, and so many of you are miserable and chasing the wrong things.

“You act like life is fulfilling a checklist. ‘I need to get a good wife or husband, then I get a good car, then I get a good house, then I get a promotion, then I get a better car and a better house and I make a name for myself and then …’” he rattled off more accomplishments that fulfill the American Dream. “But this plan will never materialize perfectly. And even if it does, then what? You don’t settle, you add more items to the checklist. It is the nature of desire to get one thing and immediately want the next thing, and this cycle of accomplishment and acquisitions won’t necessarily make you happy—if you have ten pairs of shoes you want 11 pairs.”

The Khenpo then pointed out that by pursuing this checklist, we’re often forced into acts that take us away from that higher reality and happiness. He was echoing a sentiment shared among many leaders in the tradition of Vajrayana Buddhism. Sogral Rinpoche in his 1992 work The Tibetan Book of Living and Dying called this checklist phenomenon “Western laziness.” It consists of “cramming our lives with compulsive activity, so that there is no time at all to confront the real issues … If we look into our lives, we will see clearly how many unimportant tasks, so-called ‘responsibilities’ accumulate to fill them up … Going on as we do, obsessively trying to improve our conditions, can become an end in itself and a pointless distraction.”

The average American works 47 hours a week. Our entrepreneurs and “productivity gurus” preach that a “grind” and “shut up and work harder” mentality is the secret to satisfaction. This upset in our work/life balance—or, perhaps, our problem integrating our work into our life and not the other way around—factors into why other research has shown that America is, in fact, less happy than it was decades ago.

“So this checklist plan does not make you truly happy. Then what?” said the Khenpo. He was silent. Left it open for me to ponder.

“I don’t know. I’m an ignorant American,” I said and smiled.

“Then you could be happier!” he responded with a chuckle. “Whereas if you understand this cycle and nature of mind and you prioritize mindfulness then everything will be ok. Even if you don’t become rich. Fine, you’re mindful. Even if you don’t get a perfect wife? Fine, you’re mindful.”

Ah, yes. “Mindfulness.” That squishy, what-the-fuck-does-that-even-mean word that’s so hot in America today but has, in fact, been a part of Eastern traditions since before Christ. It’s roughly defined as purposefully paying attention to what’s happening in the present moment without judgment, according to Jon Kabat Zinn, a profes-sor at the University of Massachusetts Medical School and pioneer of mindfulness in the Western world. In other words, it’s being aware of what’s going on upstairs.

The Khenpo made mindfulness sound akin to jamming a stick into the spokes of the checklist and developing a state of okayness. In other words, whether I’m rich or poor or famous or a nobody, I should avoid becoming caught up in the narratives my mind spits out and just accept the direction of things. This will help me go beyond the checklist and be just fine.

The woman who took me through the cleansing ritual entered the room. She placed a plate of sliced cucumbers and mandarin wedges on the floor between the Khenpo and me. “All organic!,” he said and grabbed a spear of cucumber. It crunched as he bit into it.

“Well, the Bhutanese, we also have ignorance, anger, and attachment. We have the same problems of the checklist. But I think less. This is because we apply what we call mindfulness of the body. We remember that everyone is dying right now,” said the Khenpo. “Everyone will die. You are not singled out. Do you know this? To not think of death and not prepare for it … this is the root of ignorance.”

Pretend you are walking along a trail, he explained, and there is a cliff in 500 yards. The catch: The cliff is death and we will all walk off it. “Buddha died. Jesus died. You will die. I will die. I would like to die on that bed,” said the Khenpo, pointing to a twin mattress on the floor.

“Don’t you want to know that there’s a cliff?” he asked. Because only then can we change our course. We could take a more scenic route, notice the beauty of the trail before it ends, say the things we truly want to say to the people we’re walking it with.

“When you start to understand that death is coming, that the cliff is coming, you see things differently. You change your mental course—you naturally become more compassionate and mindful,” said the Khenpo. “But Americans, they don’t want to hear about the cliff. They don’t think about death. After a funeral, they want to get their mind off the death and just eat cake. The Bhutanese, they want to know about the cliff and they will be happy to talk about death and ruin the cake eating.”

“So remember,” he continued. He was able to sustain the perfect upright lotus position while I was slumping and couldn’t feel my legs. “We are all dying right now. To develop this mindfulness of death you have to think of Mitakpa.”

“Mitakpa?” I asked.

“Yes,” he said. “Mitakpa.”

Before I could probe the Khenpo on Mitakpa—what it is and what it might be able to do—his time was up and I was back in Dorji’s hatchback. We were like bouncy balls in the seats as gravity aggressively pulled the car over all the rocks and ruts that once thwarted us. As we descended I asked, “Dorji, what is mitakpa?” He looked at me and shook his head. “Mi-tak-pa,” I said.

“Oh. Mitakpa,” he replied, pronouncing the word less like an ignorant American. “Takpa ‘permanent,’” he said. “Mi ‘no.’ Mitakpa ‘no permanent.’”

I began to ask him to explain further, but a Bhutanese traffic jam interrupted me. A herd of seven bulls and cows ambled up the one-lane road. Dorji pressed into the brake to slow the car to a crawl. The half-ton animals lazily parted around us. Their bells clanked as they slid down the length of the hatchback.

The next day, I headed into an apartment in the city of Thimpu to meet Lama Damcho Gyeltshen. He doesn’t ponder death in any abstract sense—he experiences it every day. He’s the head Lama at the Jigme Dorji Wangchuck National Referral Hospital, the main hospital in Bhutan. It’s there that he councils the dying. After the Khenpo elucidated the problem and hinted at some solution, the Lama, I figured, might be able to expand.

The Lama was sitting on a platform that was covered in silk meditation pads. He hopped off of it as we entered. He and I shook hands and did a lot of smiling and nodding. He was bald, short, and doughy, with wire-framed glasses. His bright white smile popped against his blaze orange robes. He sat back atop the platform, in the lotus, while Jigme and I sat on the floor. Jigme explained what I was there to talk about. Death, dying, and the Bhutanese death complex.

“Well first I’d like to thank you for coming and reminding me of death because it is important for the mind,” said the Lama. His words, naturally, set me up to ask why.

“When people come into my hospital there is a chance they leave,” he said. “But there is also a high chance they do not leave. My job is to help people prepare for death. I have found that the people who have not thought about death are the ones who have regrets on their deathbeds. Because they have not used a necessary tool that could have made them live a fuller life.” An American study conducted across various hospitals like the Yale Cancer Center, Dana -Farber Cancer Institute, and Massachusetts General Hospital supports this notion. It found that dying patients who had open conversations about their death experienced better quality of life in the weeks and months leading to their passing, as judged by their family members and nurse practitioners.

“The mind is afflicted with many delusions. But they come down to three,” continued the Lama. “And those are greed, anger, and ignorance. When your mind is not taken care of these three things have an advantage. The dying people I council … they suddenly do not care about getting famous, or their car or watch, or working more. They don’t care about the things that once angered them.” In other words: When a person realizes death is imminent, their checklist and everyday bullshit becomes irrelevant and their mind begins to center on that which makes it happy. Research from Australia found that the top regrets of the dying include not living in the moment, working too often, and living a life the person thinks they should rather than one they truly want to.

“Whereas those who have thought of their death and prepared for it,” said the Lama, “they do not have those regrets. Because they have often not fallen so much into those delusions. They have lived in the moment. Maybe they have accomplished a lot. Maybe they have not. But regardless it has not affected their happiness as much …” He expanded on this phenomenon, explaining that a sort of cosmic psychic shift often occurs in the dying. It brings them closer to the things that matter in the end. A living person who thinks of dying will, yes, initially face mental discomfort, but they’ll emerge on the other side having stolen a bit of this end-of-life magic.

“What is mitakpa?” I asked. “Someone told me it translates to ‘no permanent…’”

“Close. Mitakpa is impermanence,” said the Lama. He raised an arm and finger, like a professor making a point. “Impermanence, impermanence, impermanence.” This, he said, is the cornerstone of Buddhist teachings. Nothing lasts and, therefore, nothing can be held onto. By trying to hold on to that which is changing, like our life itself, we ultimately end up suffering. Buddha’s final words were on impermanence, a reminder that all things die. “All things change. Whatever is born is subject to decay…” he said. “All individual things pass away.”

“It’s important to preserve this precious understanding of mitakpa in your mind. It will significantly contribute to your happiness,” said the Lama. He echoed the Khenpo’s sentiment. He explained that not thinking of mitakpa often leads a person to believe that “things will be better when I do X.” Or with a false sense of permanence that causes a person to put off the things they truly want to do because “I can do that when I retire.”

“But when you understand that nothing is permanent you cannot help but follow a better, happier path,” he said. “It calms your mind. You tend not to get overly excited, angry, or critical. With this principle, people interact with others and it improves their relationships. They become more grateful and gratuitous. Because they realize all their material goods and status will not matter in the end.” And not just in Bhutan. A study in Psychological Science discovered that people who thought about their death were more likely to show concern for people around them. They did things like donating time, money, and even their blood to blood banks.

“How often should I be thinking about mitakpa?” I asked.

“You must think of mitakpa three times each day. Once in the morning, once in the afternoon, and once in the evening. You must be curious about your death. You must understand you don’t know how you will die or where you will die. Just that you will die. And that death can come at any time,” he said. “The ancient monks would remind themselves of this every time they left their meditation cave. I, too, remind myself of this every time I walk out my front door.”

We talked for a half-hour more about death and his work at the hospital. Then it was time for me to leave.

“Remember,” said the Lama as we were saying goodbye. “Death can come at any time. Any time.”


The next day I spent the morning hiking five steep miles to Paro Taksang, “The Tiger’s Nest,” a sacred 15th-century Buddhist monastery built in the traditional Bhutanese Dzong style. The monastery sits at 10,240 feet above sea level and clings to a cliff like a reptile on a vertical wall. It’s the location where in the eighth century Padmasambhava, a man considered the “Second Buddha,” meditated in a tiger-filled cave for three years, three months, three weeks, three days, and three hours.

I’d come to see the monastery’s famous artwork, much of which depicts death. It holds various images and statues of, for example, Mahakala, a protector god whose crown is ringed with skulls and whose sash is strung with severed heads. His Sanskrit name translates to “beyond time” or, more simply, “death.”

As I exited the monastery and put my shoes back on, Dorji, my driver (Bhutanese law requires all tourists to hire a guide and a driver … my guide had conked out due to the altitude), hurriedly approached me. “Someone sick,” he said in his broken English. He pointed up the trail, to a set of steep stairs cut from a cliff that lead up to a small meditation hut next to a waterfall. Towards the top of the steps, a group of people huddled. They were all wearing either traditional Bhutanese ghos or monk robes. Dorji jogged towards the group. I followed. As I quickly stepped up the thin stairs I could see feet hanging from the edge of the steps.

A monk—bald head, thin glasses, maroon robes—was down on the steps, unconscious. I recalled some basic emergency wilderness training I took and checked his spine for signs of fracture. Nothing. A general understanding arose within the group. The man needed to be moved to flat ground so he could be airlifted out.

The stairs were too steep and thin for a group carry. So we carefully propped the monk onto the back of the largest driver, who hoofed him down the steps. With the help of the group, he laid the monk onto a flat grass patch along the cliffside trail.

The monk’s eyes were rolled back as if he was scrutinizing the brain above them. “I’m going to do CPR,” I slowly told the group. They only partially understood me. As I knelt in front of him two tiny women, a mother and daughter who were both doctors in Hong Kong, were suddenly at my side. They were hiking to the monastery when they walked into this scene.

They pressed their fingers to the man’s neck to check vitals and agreed that CPR was needed. These two were surely better trained. But I was the only person with any training who was also large enough to optimally execute CPR on the 200-pound monk.

I tore open his robe, revealing a gold t-shirt. I dug my knees into the dirt, overlapped my hands, and placed the heel of my right hand on the monk’s sternum. Then I began hammering into his chest; 100 beats a minute as the daughter doctor began a timer.

I was unsure of the cultural implications of giving a monk mouth-to-mouth. So the younger Hong Kong doctor quickly instructed one of the other monks, a woman, on how to do it. She breathed into him, repeatedly pushing air into his lungs. Then I was back to compressing his chest.

“Time is 10:26,” said the daughter. A crowd had formed around us, and a driver who was on the phone stepped into the group. “Helicopter cannot come,” he told us. There was nowhere to land, and the cliffs were too close for an airlift.

The daughter checked the monk’s vitals. She shook her head. I continued pressing. Pressing, pressing, as hard as I could, thinking that if I could push hard enough it might kickstart his heart. We hit the fifteen-minute mark. His face was distant. “20 minutes 11 seconds,” said the doctor. “You can stop.” He was gone.

Here was a man who just minutes ago had hiked five steep miles. And he was joking and laughing and talking with friends along the way. Death can come at any time.

Complete Article HERE!

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!