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!

The Grief Crisis Is Coming

For each person who dies of Covid-19, experts say there are at least nine newly bereaved. We must begin to address the toll.

By Allison Gilbert

The end of the Covid-19 crisis in the United States is in sight, thanks to effective vaccines being deployed on a massive scale. But the still growing death toll will leave behind millions of bereaved people, wracked by the suffering that the loss of a loved one can bring. This is a public health crisis with consequences that may last generations, which we do not currently have the policy tools or resources to address.

We first need to get a sense of the scope of our national grief. Researchers are just beginning to count the bereaved, and while current estimates suggest five million Americans have lost a loved one to Covid-19, the final tally is likely to be much larger.

Ashton Verdery, an associate professor of sociology and demography at Pennsylvania State University, recently led a study that introduced the Covid-19 Bereavement Multiplier. By his team’s calculus, for every person who dies of Covid-19, nine loved ones are left behind.

To arrive at that number, the researchers included the losses of spouses, siblings, parents, children and grandparents. If other relatives — like nieces, nephews, aunts, uncles, stepparents — and friends are taken into account, “you may get 10 times or more” people in grief, Mr. Verdery said.

I know, from losing my parents at a young age, that grief plays out in waves across one’s life and has no clear ending. We should be prepared for another health catastrophe; while the Covid-19 vaccines can put a cap on the burden, they can’t halt or alleviate the pain. A recent study found that at least 37,000 children in the United States have lost a parent to Covid-19 so far.

Experts and grief organizations are asking American leaders to address this growing crisis. Evermore, one of the nonprofits that I have collaborated with in the past, is calling for the Biden administration to establish the first White House office of bereavement care to respond to the emotional and financial needs of grieving people after tragedy.

Another coalition of national bereavement organizations and grief researchers recently wrote to President Biden urging him to fund grief intervention services, including training to educate the public and professionals such as social workers, psychologists, teachers and clergy on how to assist the grieving.

Grass-roots groups like Covid Survivors for Change and Marked by Covid have lobbied at the state and federal levels for accountability to relatives of victims, including public and online spaces for mourning and remembrance, and compensation for families of people lost to Covid-19.

The effects of grief can be as physical as the symptoms of any disease. The short- and long-term impacts are well studied and include trouble sleeping, higher blood pressure, depression and anxiety. Studies have found that people who lose a spouse die earlier than their married peers. Children who experience loss of a parent may suffer lasting consequences, including lower grades and failing in school, as well as increased experimentation with drugs and alcohol.

The social effects can be drastic as well. Nearly 90 percent of young people in the juvenile justice system report having experienced the death of at least one loved one. And although grief is a universal experience, it can contribute to lifelong racial inequality, as Black Americans experience the loss of loved ones far more frequently and earlier in life than white Americans, contributing to differences in mental and physical health outcomes.

“Grief should be investigated the same way we examine other public health indicators like obesity, smoking and drinking,” said Dr. Toni Miles, a professor of epidemiology and biostatistics at the College of Public Health at the University of Georgia.

After conducting a statewide health survey three years ago, Dr. Miles discovered that 45 percent of Georgia residents over 18 indicated they were newly bereaved. The findings suggested that grief was far more prevalent than the other three risk factors, she said.

Viewing grief as a threat to overall health could pave the way for prevention efforts — including financial assistance — that help individuals navigate life-altering changes, such as shifts in family income and housing. “We need systemic change to protect those who are left behind,” Dr. Miles told me.

A White House office of bereavement care is a necessary start, and could benefit families who have lost loved ones to other causes, such as gun violence. There are early signs that this administration could be the one to embrace bereavement care. Starting on Monday, people who paid for the funeral and burial expenses of someone who died from Covid-19 can apply for up to $9,000 in reimbursement, the Federal Emergency Management Agency recently announced.

Mr. Biden has spoken frequently from experience about the scars that grief can leave, and what it’s like to face the “empty chair around the kitchen table.” He has the chance to reduce the toll that loss takes on its victims and on all of us.

Complete Article HERE!

Rethinking quality care

— A long-term care psychologist’s perspective

By Eleanor Feldman Barbera, Ph.D.

Quality care is often considered from a medical perspective, with the focus on providing the best possible medical services. This is, of course, an essential element of the services provided in long-term care.

But at a time when there’s a greater push for community care over nursing and rehabilitation centers, it’s worth rethinking what quality means to the residents themselves. After 20-plus years of talking to them, some general themes are clear.

Which features are most important to a particular resident depends to a significant degree on which of the four categories they fall into: short-term rehab (STR), long-term care (LTC), end of life (EOL), or relatively young with concurrent substance abuse and/or mental health problems (SAMI). While the categories aren’t mutually exclusive, I find them a helpful framework in considering resident needs.

Moreover, while most nursing homes have residents from each category, some facilities have a larger proportion of one population over another. For example, tallying data from LTCFocus.org shows that in 2019 the average U.S. facility had almost 12% of its population with a diagnosis of schizophrenia or bipolar disorder, but some facilities had none and some had over 95% of their residents with these diagnoses. 

Facilities should therefore consider their population makeup to better address their particular mix of residents. 

All residents

All residents in each category require their basic needs met. As we learned in grade school, this means food, clothing and shelter. In a nursing home setting, we can include assistance with activities of daily living (ADLs). 

Facilities consistently provide food and shelter, but if residents don’t have clothing, they wear hand-me-downs or medical gowns. This is a frequent source of distress for residents, who find it humiliating and depersonalizing. 

Meager personal needs allowances (PNA) without inflation adjustments cannot cover clothing costs. In New York State, for instance, the PNA has been $50 per month since 1980. An inflation-adjusted amount would be a more reasonable $159.60 per month, which would allow for a haircut (not a covered necessity!), cell phone service and a new shirt.

Quality care would offer residents a better means to access their funds so that they’re not dependent on family or staff, especially since an increasing number of residents have no community contacts. I like the idea of a debit card linked to their facility accounts so that they can order items online, thereby increasing their independence and reducing demands on staff.

We also fall short on providing an adequate level of assistance with ADLs. The single most distressing aspect of care for virtually all residents is not being toileted in a timely fashion. If we addressed this, the perception of quality care would increase dramatically and we’d prevent a host of additional and costly problems such as falls and skin breakdown, as I outlined in If toileting were a billable service….

Short-term residents

Residents who are admitted for short-term rehab following brief illnesses, knee replacement surgeries, etc. require the usual focus on their physical health, including medical care and rehabilitation.

Other primary concerns for these residents include pain management, adjusting to physical impairment and practical issues such as paying bills so that they have a home upon discharge.

Quality care would suggest swift access to pain management specialists and universal referral for psychological evaluations (rather than on a case-by-case basis), as well as a better means to assist people with managing problems at home. 

STR residents frequently require medical follow-up from outside professionals, necessitating coordination between providers. If the field had “transition specialists,” to track and meet resident needs from hospital to clinic to nursing facility to home, this would vastly improve care. Transition specialists could also take on tasks such as picking up mail and clothing to ease the foreseeable difficulties of STR residents.

Long-term residents

LTC residents tend to be more stable medically and to have completed the process of impoverishment (a very troubling issue for them) so that they’re no longer worried about bills and finances. Their focus is generally on remaining connected to family members, engaging in absorbing recreational pursuits and maintaining their physical abilities. 

Facilitation of family communication, connection with other residents in meaningful activities and ongoing exercise by dedicated staff leads to quality care to this group.

End of life care

For a variety of reasons, very ill residents frequently receive medical interventions that are painful, stressful, expensive and unlikely to improve their conditions. Hospice and palliative care are often initiated too late for residents to gain the most benefit. 

Quality care for these residents would involve deeper conversations about end of life wishes for residents and their family members, a greater team emphasis on providing a “good” death based on their wishes and earlier involvement of the hospice and/or palliative care team. 

Younger, mentally ill and substance-abusing residents

It’s a societal failure that relatively young individuals with mental illness, many of whom have lacked adequate social supports and have attempted to self-medicate with drugs and alcohol, would find themselves living in a nursing home following a physical health crisis. 

It would be more fitting for the country to develop care homes where people with concurrent physical and mental health problems can be treated for both, in an environment with more independence and suitable activities and peers.

Nevertheless, our facilities are increasingly filled with such residents, who have almost doubled in number since 2000. Providers looking for suggestions on how to manage this population will find ideas in my 2019 column, Severely mentally ill residents: A ‘perfect storm’ creates a SNF wave. 


As the provision of eldercare is reexamined in the aftermath of the pandemic, we have the opportunity to rework old assumptions and procedures. The framework outlined above is one way to consider the needs of a diverse population and to create long-term care that provides higher quality care for all residents.

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!

Misconceptions about dead bodies hold back Maine’s sustainable death practices

Jim Fernald, funeral director at Brookings-Smith, shows two different green funeral caskets. Wooden dowels are used rather than nails or screws in green caskets.

by Sam Schipani

Environmentally friendly treatment of a body after it dies is garnering more interest in Maine these days. There are some passionate advocates for new, less environmentally harmful practices, but there are political, cultural and logistical challenges that could stand in the way of widespread change in the funeral industry.

Across the country, public health policies are wary about practices such as green burials and liquid cremation.

Caitlyn Hauke of New Hampshire is the vice president and board member of the Green Burial Council, a California-based advocacy group for more sustainable death practices. She said that many of the policies that make green burials and other sustainable methods of final disposition more difficult are the result of an outdated or misinformed understanding of death.

“I serve on the board of cemetery trustees for [Lebanon, New Hampshire], and some of the hang ups in trying to change municipal bylaws to allow green burial are these misconceptions that dead bodies spread disease, there’s going to be contamination of the ground and water and things that aren’t true,” Hauke said. “It’s hard to convince people that are set in their ways [that these things aren’t true].”

As an added challenge, Maine crematoriums are required to be located in a cemetery, according to Jim Fernald, spokesperson for the Maine Funeral Directors Association and funeral director of Brookings-Smith in Bangor. Crematoriums are also subject to restrictions in terms of size and licensing.

Some want to see that change though, allowing for more flexibility in how a body is handled after death. There is currently a bill before the Maine state legislature to consider reforming the liquid cremation rules to allow them to happen off-site of a cemetery.

Policy is one thing, but there is also the more challenging issue of shifting culture — specifically how people think — to look at death differently.

“Americans tend to avoid talking about death, you know,” said Chuck Lakin, a volunteer with the Funeral Consumers Alliance of Maine. “When they do, they get a lot of misinformation or they’ve heard things and they keep passing them around.”

Lakin runs a website called Last Things that provides information about what is and isn’t legal and safe when it comes to funeral options in Maine.

Still, it can be difficult to spread the word when death is such a taboo topic. Katie Riposta is the funeral director at Direct Cremation of Maine in Belfast, which conducts liquid cremations. She sees continued challenges with spreading the word about the various options available for final disposition.

“It’s hard to advertise because you have to find a professional and tacit way of letting people know there’s new information without seeming sales-y,” Riposta said. “We think the process is a very nice process for end of life final disposition, but some people don’t like to talk about that in advance. I would say the consumer knowledge in and around Maine is limited, [but] people are certainly becoming more educated.”

Even if consumers are aware of the sustainable options, these methods for final disposition require a significant amount of advance planning and advocating for your specific after-death wishes — much more so than a conventional funeral. If there is a sudden death and people don’t have the chance to plan a sustainable burial, their families will likely default to a more conventional, less sustainable option.

“When someone dies suddenly, people just stop thinking. They really need the help of professionals to guide them through,” Fernald said. “Making the green the default would be a much larger culture shift.”

Green death options in Maine are still very limited. Currently, there are only two designated green cemeteries in the state of Maine: Rainbow’s End Natural Cemetery in Orrington and Cedar Brook Burial Ground in Limington. Other cemeteries have designated areas for green burials.

Meanwhile, Direct Cremation of Maine is the only provider of liquid cremation for human remains, though policy shifts might open the door for more to open in the future.

“Green cremation is definitely an interesting process,” Riposta said. “We’ll see in the future how crematories are regulated as a whole and see where it goes from there.”

Funeral industry professionals are divided as to whether the green funeral movement will continue to grow in Maine. Fernald thinks that it will remain niche.

“Death and ritual is so individual based on previous death experiences and how you’re raised,” Fernald said. “When people are in an emotional part of their life, they go to things that are natural to them. If they were always raised to live off the land and all that, I would think [green burial] would be what they gravitate to during a time of loss.”

Awareness may be the most challenging element of the movement towards more sustainable funeral practices, but Hauke said that “the more people hear about it, the more interested they become.”

“The movement is growing thanks in part to the increased attention to the death positive movement that this is sort of opening doors to conversations about death that Americans have shied away from,” Hauke said.

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!