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Mary-Frances O’Connor Recommends Readings for the Grieving Brain

The Psychologist and Author Shares Her Picks for
Understanding Life’s Lows

By Mary-Frances O’Connor< In The Grieving Brain: The Surprising Science of How We Learn from Love and Loss, I make a distinction between “grief” and “grieving.” Grief is the wave that knocks you off your feet and surprises you with both its ferocity and its strangeness, nothing like the simple sadness that we might have expected. But having authors who have depicted their excruciating experience for us makes us feel less alone, or at least more normal, and thus these books are invaluable. Grieving, on the other hand, is how the feeling of grief changes over time without ever going away. Grieving is the process when we come to discover that we must carry grief with us, carry on with the grief in tow, while somehow restoring a meaningful life. We are not alone in this either, because creating a meaningful life is a never-ending process; learning how other authors have done it—reflecting on their philosophy—connects us all in this universal human trademark experience.

It's OK That You're Not OK

Megan Devine, It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand

Recently, a dear friend has been grieving the death of his mother, has been distant and avoiding our circle of friends, and has erupted in anger at seemingly minor moments. I recognize his path, walking through the dark night of loss. For him, and for others acutely grieving or struggling over time, I recommend Megan Devine’s fantastic account of how to avoid the “tyranny of positive thinking” that many bereaved people are confronted with. She explains why words of comfort can sound so bad and enables me to invite my dear friend to share with me what it feels like to be him, living inside grief.

Year of Magical Thinking

Joan Didion, The Year of Magical Thinking

Joan Didion’s story of not being able to throw out her husband’s shoes after he died because he would need them again may have been my first inkling that the brain can really be drawing on two different sources of information at the same time, even if they conflict. Through Didion’s honesty and courage about her own grief experience, she reveals the lived experience that led me to develop the gone-but-also-everlasting theory: when we bond with a loved one, that bond is encoded in the brain with the incontrovertible belief that our one-and-only will always be there. This conflicts with the memory of their funeral, with their absence at breakfast, lunch, and dinner. As a neuroscientist, Didion’s brilliant writing made me understand magical thinking is not to be ignored as the ravings of grief but could reflect exactly how the brain processes the world.Man's Search

Viktor Frankl, Man’s Search for Meaning

My mother died when I was training to become a psychologist and, in the wake, I sought out a clinical practicum working with terminally ill prison inmates. Perhaps because my scale for what “awful” felt like had been completely rescaled? In any case, I did not have the training to work with the life-sentence, unable-to-speak-from-throat-cancer inmate I counseled for several months before his death. And so, I read Viktor Frankl’s writing about his experience in a Holocaust concentration camp, thus shaping my understanding that when the worst possible thing is happening, you can find meaning. Or at least you can go on…because they did. And there is beauty in that connection, which helps you go a little further.

Hold Me Tight

Sue Johnson, Hold Me Tight: Seven Conversations for a Lifetime of Love

To understand grief, you must first understand bonding, since you cannot know what has been lost unless you understand what it was you had. And if you ever hope to restore a life full of loved ones, knowing how to build them is key. There is no better insight into close relationships than the work of Sue Johnson. Even as a clinical psychologist, this book helped me to understand my relationships, past and present, more deeply and clearly than I ever had before.

How to Live Good Life

Massimo Pigliucci, Skye Cleary, & Daniel Kaufman, How to Live a Good Life: A Guide to Choosing Your Personal Philosophy

With a name like mine, it will come as no surprise that I was raised Catholic. After my father died, I thought a lot about how he had created a meaningful life and the relationship between his faith and his actions in this world. Although I spent years engaged in Quakerism and then Buddhism, I had never settled into a faith community. In my quest to discover the philosophic or religious views that resonated with my own, I found the collection of short essays by Pigliucci, Cleary, and Kaufman to be a valuable guide, offering me new insights into classical religions and introducing me to new philosophies such as effective altruism.

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The Grieving Brain

Mary-Frances O’Connor’s book, The Grieving Brain: The Surprising Science of How We Learn from Love and Loss is forthcoming in February 2022 from HarperOne.

Complete Article ↪HERE↩!

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The Burden of the Black Mother

Members of the “Mothers of the Movement,” who are mothers of victims of police shootings, in July 2016.

By

As soon as Mamie Till-Mobley, then Mamie Till, learned of her son’s torture and murder, she got to writing. There was work to be done, a need to understand every detail, a responsibility greater than her own healing. Her memoir — she did not live to witness its publication some 50 years later — reflects, “Emmett was dead. They had pulled his body from the Tallahatchie River … weighted down by a heavy gin fan tied around his neck with barbed wire … I had to get everything down … I was the one who was going to have to explain to people.”

The ritual of a Black mother’s public grief after her child is stolen from this Earth is an American obsession, however numbing. It’s tradition to focus on watching what this Black mother does and what that Black mother says, not because we care for her — we’re focused because we care about what she can do for the rest of us.

Till-Mobley’s instinct wasn’t wrong. She wasn’t imagining more pressure for herself than what was foisted on her; instead, she vocalized Black mothers’ most conflicting internal monologue, the one where we’re conditioned as selfless beings told to withstand more than the rest, represented not as mothers of our own children but mothers of movements and a nation. Within moments of learning their baby is gone, their worst nightmare realized, they are asked to comment, to mourn publicly but to do so with restraint, to impart some kind of hopeful message or motivation, to provide a call to action, to do something, anything, larger with their pain than to grieve.

Nearly six decades after Till-Mobley started writing, Sybrina Fulton found herself in similar circumstances, sitting in court identifying her child’s screams in the background of a recorded 911 call. Fulton was thrust into the spotlight in the most tragic way. She would later say, “At first, I didn’t want to be the voice for Trayvon after he died, but I decided I have no choice. Now, I’m called to act and called to serve.”

She did not stand alone with this burden. Fulton, Lezley McSpadden (Michael Brown’s mother), and Lucy McBath (Jordan Davis’s mother) all translated their worst personal traumas into tangible political and civic action. Not only was each asked to calm her raging community by speaking to crowds while at her own loss for words, all three ran for office to try to find justice for their children. McBath won her race for Congress; Fulton’s and McSpadden’s efforts came up as short as the system that had failed their sons. Where they were willing to do everything in their limited power to recover from this great American debt, they did not receive that backing in return.

The problem with seeing Black mothers as an endless energy source, both in the home and on the world stage, is that it conflates all their sacrifices with superhuman strength. Their every decision becomes one made on behalf of Black people and on behalf of the entire Republic, instead of part of their own restoration. We prioritize our needs over theirs, assuming they can forgo their own. Absolve a country from having to reckon with its own harm-doing, and it’ll turn the responsibility back on these mothers for their loss. And when they ask for help with these pressures, it is rare for such needs to be met.

Black mothers’ uncompromising stance that their tragedies not be taken in vain has shaped much of our history. Till-Mobley’s demand that Emmett’s casket be left open at his funeral propelled the civil-rights movement forward. However, it has grown too heavy for one body to carry a fight that requires us all. It’s time to mother our Black mothers for a change.

Complete Article ↪HERE↩!

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Experts warn of the increasing overmedicalization of death, call for rethink of how society cares for dying people

Health and social systems around the world are failing to give appropriate, compassionate care to people who are dying and their families. According to a new Lancet Commission, today’s current overemphasis on aggressive treatments to prolong life, vast global inequities in palliative care access, and high end-of-life medical costs have lead millions of people to suffer unnecessarily at the end of life.

The Commission calls for public attitudes to and dying to be rebalanced, away from a narrow, medicalised approach towards a compassionate community model, where communities and families work with health and to care for people dying.

Bringing together experts in health and social care, , economics, philosophy, political science, theology, community work, as well as patient and community activists, the Commission has analysed how societies around the world perceive death and care for people dying, providing recommendations to policy makers, governments, civil society, and health and social care systems.

“The COVID-19 pandemic has seen many people die the ultimate medicalised death, often alone but for masked staff in hospitals and intensive care units, unable to communicate with their families, except digitally”, says Dr. Libby Sallnow, palliative medicine consultant and honorary senior clinical lecturer at St Christopher’s Hospice and UCL (UK) and co-Chair of the Commission, “How people die has changed dramatically over the past 60 years, from a family event with occasional medical support, to a medical event with limited family support. A fundamental rethink is needed in how we care for the dying, our expectations around death, and the changes required in society to rebalance our relationship with death.”

The Commission focuses primarily on the time from when a person is diagnosed with a life-limiting illness or injury, to their death and the bereavement affecting the lives of those left behind—it does not cover sudden or , deaths of children, or deaths due to injustice.

Death and dying have become over-medicalised, hidden away and feared

Over the past 60 years, dying has moved from the family and community setting to become primarily the concern of health systems. In the UK for example, only one in five people who require care are at home, while about half are in hospital (table 2).

Global life expectancy has risen steadily from 66.8 years in 2000 to 73.4 years in 2019. But, as people are living longer, they are living more of these additional years in poor health, with years lived with disability increasing from 8.6 years in 2000 to 10 years in 2019.

Prior to the 1950s, deaths were predominantly a result of acute disease or injury, with low involvement from doctors or technology. Today, the majority of deaths are from chronic disease, with a high level of involvement from doctors and technology. The idea that death can be defeated is further fuelled by advances in science and technology, which has also accelerated the over-reliance on medical interventions at the end of life.

And, as healthcare has moved centre stage, families and communities have been increasingly alienated. The language, knowledge, and confidence to support and manage dying have been slowly lost, further fuelling a dependence on health systems. Despite this, rather than being viewed as a professional responsibility for the doctor, and a right for all people and families who wish it, conversations about death and dying can be difficult and uncomfortable and too often happen in times of crisis. Often they don’t happen at all.

“We will all die. Death is not only or, even, always a medical event. Death is always a social, physical, psychological and spiritual event and when we understand it as such we more rightly value each participant in the drama,” adds Commission co-author, Mpho Tutu van Furth, priest, Amstelveen, Netherlands.

Worldwide, too many people are dying a bad death

While palliative care has gained attention as a specialty, over half of all deaths happen without palliative care or pain relief, and health and social inequalities persist in death.

Interventions often continue to the last days with minimal attention to suffering. Medical culture, fear of litigation, and financial incentives also contribute to overtreatment at the end of life, further fuelling institutional deaths and the sense that professionals must manage death.

Dr Libby Sallnow and Dr M.R. Rajagopal call for radical rethink of how society cares for dying people. Today’s current overemphasis on aggressive treatments to prolong life, vast global inequities in palliative care access, and high end-of-life medical costs have lead millions of people to suffer unnecessarily at the end of life. The Lancet Commission on the Value of Death provides recommendations to policy makers, governments, civil society, and health and social care systems. Credit: The Lancet

Untreated suffering, vast inequalities, and aggressive medical treatments have come at a high cost. A disproportionate share of the total annual expenditure in high income countries goes towards treatment for those who die, suggesting that treatments at the end of life are being provided at a much higher threshold than for other treatments.

In high income countries, between 8% and 11.2% of annual health expenditure for the entire population is on the less than 1% who die that year (table 6). Care in the last month of life is costly and, in countries without universal health coverage, can be a cause of families falling into poverty.

“Dying is part of life, but has become invisible, and anxiety about death and dying appears to have increased. Our current systems have increased both undertreatment and overtreatment at the end of life, reduced dignity, increased suffering and enabled a poor use of resources. Healthcare services have become the custodians of death, and a fundamental rebalance in society is needed to re-imagine our relationship with death,” says Dr. Richard Smith, co-Chair of the Commission.

A fundamental change to society’s care for the dying is needed

The Commission sets out five principles of a new vision for death and dying:

1. The social determinants of death, dying and grieving must be tackled, to enable people to lead healthier lives and die more equitable deaths.

2. Dying must be understood to be a relational and spiritual process rather than simply a physiological event, meaning that relationships based on connection and compassion are prioritised and made central to the care and support of people dying or grieving.

3. Networks of care for people dying, caring, and grieving must include families, wider community members alongside professionals.

4. Conversations and stories about everyday death, dying, and grief must be encouraged to facilitate wider public conversations, debate, and actions.

5. Death must be recognised as having value. “Without death, every birth would be a tragedy.”

The Commission recognises that small changes are underway—from models of community action to discuss death, national policy changes to support bereavement, or hospitals working in partnership with families. While wholescale change will take time, the Commission points to the example of Kerala, India, where over the past three decades, death and dying have been reclaimed as a social concern and responsibility through a broad social movement comprised of tens of thousands of volunteers complemented by changes to political, legal, and health systems.

“Caring for the dying really involves infusing meaning into the time left. It is a time for achieving physical comfort; for coming to acceptance and making peace with oneself; for many hugs; for repairing broken bridges of relationships and for building new ones. It is a time for giving love and receiving love, with dignity. Respectful palliative care facilitates this. But it can be achieved only with broad-based community awareness and action to change the status quo,” says co-author Dr. M.R. Rajagopal, Pallium India, India.

To achieve the widespread changes needed, the Commission sets out key recommendations for policy makers, health and social care systems, civil society, and communities, which include:

  • Education on death, dying, and end of life care should be essential for people at the end of life, their families and health and professionals.
  • Increasing access to pain relief at the end of life must be a global priority, and the management of suffering should sit alongside the extension of life as a research and care priority.
  • Conversations and stories about everyday death, dying, and grief must be encouraged.
  • Networks of care must lead support for people dying, caring, and grieving.
  • Patients and their families should be provided with clear information about the uncertainties as well as the potential benefits, risks, and harms of interventions in potentially life-limiting illness to enable more informed decisions.
  • Governments should create and promote policies to support informal carers and paid compassionate or bereavement leave in all countries.

Complete Article ↪HERE↩!

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With rising covid cases, young people should consider advance-care planning

By Netana Markovitz

When Jordana Fremed, 26, got engaged, she didn’t think that one of the first serious topics the couple would discuss would be death and dying. But soon after, her fiance’s mother was diagnosed with amyotrophic lateral sclerosis, prompting difficult discussions to plan his mother’s end-of-life care.

Eventually, the couple started talking about wishes for their medical care should they be sick or injured and unable to communicate.

The experience “definitely got us thinking about those questions in relation to what we might want for ourselves,” said Fremed, of Teaneck, N.J.

Medical experts such as Rebecca Sudore, palliative medicine physician and geriatrician at the University of California at San Francisco, say that faced with these numbers, more young people should consider advance-care planning — a process that helps people think through medical decision-making should they be unable to communicate themselves.

“You know the old saying, ‘I could get hit by a bus tomorrow?’ And actually you could,” Sudore said. “And covid has shown us, too, that things are unpredictable. For people in their 20s or 30s who don’t have a serious illness, it could be helpful to think, ‘Well, if I did get hit by a bus tomorrow, who would speak up for me?’ ”

Sudore said she thinks that advance-care planning is an important way for people to participate in their own medical care. “People, particularly in their 20s, can think about advance-care planning as a way to prepare for medical decision-making and really to ensure that people have a voice in their health care, both now and in the future,” she said.

Advance-care planning is an umbrella term that may include completing advance directives — documents that provide written instructions for loved ones and a medical team. They may include specific instructions about which medical interventions doctors can perform — or withhold — such as CPR, mechanical ventilation or artificial nutrition.

Directives can also include broader descriptions of what a person considers a good quality of life, such as the ability to run or spend time with family.

These descriptions can help doctors imagine what a patient would want if they could communicate themselves and determine what medical interventions to offer.

Finally, advance directives often designate an individual to make medical decisions on a person’s behalf, should that person become incapacitated.

“It’s important for every person to think about this topic because unexpected and tragic things happen every day,” said Laura Taylor, a palliative care physician at the University of Michigan. “The pandemic has taught us is that even completely healthy adults can develop serious or life-threatening illness from covid-19, especially with the spread of more virulent variants like delta. And some of those people will require a surrogate decision-maker.”

While less likely to die than older adults, Americans in their 20s and 30s do face risks. The three leading causes of death in adults ages 25 to 34 in 2019 were unintentional injury, suicide and homicide, according to data from the Centers for Disease Control and Prevention. As of Jan. 19, over 5,000 adults between the ages of 18 and 29 in the United States have died of covid-19 since the start of the pandemic, according to provisional data from the CDC. Three hundred per 100,000 adults in this age group have been hospitalized.

In advance-care planning, young adults should first consider who they would want to make decisions on their behalf should they be unable to do so. That person is called a surrogate decision-maker or health-care proxy.

Experts agree that young, healthy adults should worry less about the nuances of medical decision-making, such as whether they would want to be intubated, and instead focus on designating a surrogate decision-maker.

“I think the majority of healthy young adults probably would default to receiving all aggressive, life-prolonging interventions that were offered to them if they were to become seriously ill, so it’s less important for young adults to have a detailed sense of their preferences and wishes,” Taylor said. “For young adults, it’s most important to identify the best surrogate decision-maker who understands that person well and can advocate for them.”

Legally, it might not be who they expect.

“People might assume ‘I want my roommate or my partner to make these decisions for me,’ ” Sudore said, “but it could be some estranged family member because that person is the next of kin.”

“I’m thinking about a young unmarried person who may not have a strong or trusted relationship with their parents, who may not want their parents to be their surrogate decision-makers, but they become their decision-makers by legal default,” Taylor said. “It’s really important for that person to decide who they would want to be assisting in medical decision-making for them if they were unable to.”

After choosing a surrogate, it is important to discuss health wishes together to ensure that the surrogate is comfortable making those decisions. Sudore recommended talking to the person about “what’s important in your life, and for your quality of life, and for your health care, so that this trusted person is really prepared to advocate for you if ever they needed to.”

Sudore is the founder and director of PREPARE for Your Care, an interactive site on advance-care planning. It yields a prepopulated advance directive for a specific location, as the process can vary by state. The documents can be updated at any point, should someone’s wishes or circumstances change.

“We have these easy-to-read advance directives,” Sudore said. “They focus on things like value, goals, what brings quality to somebody’s life, which is probably more important to someone in their 20s than ‘Do you want CPR or mechanical ventilation?’ ”

Olivia Duffield, 24, a medical student at Temple University in Philadelphia, first heard about advance-care planning during the terminal illness of a family member when she was a child. After learning more in a bioethics course, she broached the topic of her own wishes to her parents.

“For me, I think about what would happen if I were to get into a car accident or have a really sudden unexpected event that would cause me to potentially be brain dead or to be intubated in the hospital,” Duffield said.

Sudore said advance-care planning should be normalized for young people.

“When I think about it, it’s a kindness to ourselves in the sense that it gives us empowerment to make sure that our voice is heard if there’s a time that we could not speak for ourselves,” she said. “And it’s a kindness to our loved ones by giving them a little bit of a heads up.”

Fremed agrees: “You kind of always think that you have until tomorrow to do it, but things can happen in a moment. Having your other person know what your wishes are and what you want is just a very smart and healthy thing to do.”

Complete Article ↪HERE↩!

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Hard Conversations About End Of Life Wishes

— Should Young Adults Be Included?

By Carolyn Rosenblatt

Talking about one’s end of life wishes is typically uncomfortable for most. We think of the subject as one for our aging parents to have with us when they are “old”. We don’t usually think it is a necessary subject for younger adults to know about. The truth is, many younger adults are already caregivers and they must deal with these issues.

A real life example is that of Anna, a bright and ambitious teenager when her father had to retire from work on disability. Three years later, he passed away. Anna was an only child, living with her mom. The last thing anyone expected was for her mother to have a health issue.

Anna’s mother, Linda had already retired from teaching at a university. She had a pension and some income from rental real estate. She was working part time in the field of education. At only age 59, Linda began to show signs of memory loss. She was diagnosed with early onset dementia and had to stop working. Anna and Linda lived on Linda’s income. Linda’s dementia progressed. At age 21, just graduating from college and starting her career, Anna became the agent and power of attorney for her mother. Eventually Anna had to sell the family home to pay for her mother’s care. Over time, Linda became a behavior problem and Anna had to place her in a care home. Eventually Anna had to sell off her mother’s invested assets to pay for Linda’s increasing care needs. When the money ran out, Linda qualified for Medicaid but then the choices of care for her were extremely limited. Anna found a low cost board-and-care home for Linda two hours away. It took Anna half a day just to make a visit.

Anna was faced with every decision about her mother all on her own. She got advice from time to time at AgingParents.com but it was a huge burden to manage all this while getting her first jobs and establishing her own career. When end of life decisions had to be made Anna did her best to honor what she thought her mom would want. Linda had not ever talked about her end of life wishes with her young daughter. It was a heavy burden on Anna. When the doctors asked her what she wanted to do at decision time for Linda, she was in tears. She guessed, without being sure and it was emotionally wrenching for her.

The Takeaways

None of us are guaranteed a long retirement with our health intact. None of us need let our family members down by failure to discuss what we want in our last days. The struggle to figure out all the things Anna had to do for her mother was an extremely stressful burden. We owe it to our offspring, or others who would have responsibility to assist us in declining health, to be clear about what we want. We use Advance Healthcare Directives, also called Healthcare Proxies or Power of Attorney for Healthcare to give written instructions to our loved ones. That makes it much easier on them when the time comes. When Linda could no longer say what she wanted, due to Alzheimer’s disease, Anna had to try to imagine what Linda would want. The process was traumatic. She did well regardless, and went on years later to have a family of her own. Hard as it is, she will not repeat her mother’s lack of discussion on this important topic with her own child.

If there is one thing to take from this true story, some of which I witnessed personally, it is that any young adult deserves to know the wishes of an aging parent or any parent with a health issue. Linda could have done that upon becoming widowed. There is a free, downloadable version of an Advanced Healthcare Directive available on the internet, from your doctor’s office or your nearest hospital. If any part of it is unclear, a conversation about it with a medical professional can help.

Above all, fill it out and sign it as the document requires, with either a notary or witnesses. With this simple step, you are saving your younger loved ones from conflicts and distress about what to do near the end of your life. And equally as important, take the document out and show it to every adult in your family who will be appointed to carry out your wishes. Make it easier on them at a possibly difficult time. It’s the responsible and caring thing to do. If you need some help, free guides are available at The Conversation Project to get you started.

Complete Article ↪HERE↩!

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When patients don’t want to be saved

— Navigating the right to die

By Jules Murtha

  • Patients have a right to shape their end-of-life care with advance directives and other palliative care options.
  • Clinicians can better serve patients of different faiths by approaching care with cultural competency.
  • When ethical dilemmas regarding palliative care arise, clinicians can return to the basic ethical principles: autonomy, beneficence, nonmaleficence, fidelity, and justice.

The relationship between morality and death is a historically significant one. Modern death in America often entails care provided by strangers in an institution flooded with machinery, far from the comfort of one’s family and home. Many physicians and scholars deem this a poor way to die.

Now, some patients nearing the end of their lives have an alternative to prolonged suffering in a hospital: Medical-assisted death. The moral logic supporting a patient’s right to terminate their life by means of lethal medication, either through self-ingestion or with a doctor’s help, is based on harm reduction. Legal, ethical, and professional controversies related to this practice are still surfacing.

The process of terminating care

Death is inevitable. The degree to which one suffers, however, can be modified by choosing appropriate end-of-life care. According to a 2021 article published by SAGE Open Medicine, mitigating suffering, optimizing quality of life, and providing comfort in death are the goals of palliative care.

What is an advance directive?

When a patient is no longer capable of communicating their desire to terminate treatments, advance directives are useful. An advance directive is a legal document specifying the kind of care a patient wants to receive, should they lose the ability to communicate due to a serious injury or neurodegenerative disease. Patients who complete them must be at least 18 years old.

Advance directives may include the following:

  • Living will: A legal document that describes medical or life-sustaining treatments patients may want if they become permanently unconscious or terminally ill. Writing a living will gives patients the power to make decisions for themselves when unforeseen circumstances arise.
  • Do not resuscitate order (DNR): The formal request that hospital staff do not perform CPR on an individual if their heart or breathing stops. DNRs do not have to be a part of a living will. They are accepted in all states.
  • Durable power of attorney for healthcare (DPA): Legal in most states, a DPA specifies whom is held responsible for a patient’s healthcare decisions if the patient is unable to make them on their own.
  • Physician orders for life-sustaining treatment (POLST): Designed for patients with serious illnesses, physicians complete POLSTs to ensure patients receive their desired care.

Advance directives may be especially helpful for patients who endure immense suffering. A patient with terminal cancer, for example, may document their request that hospital staff forgo  a respirator if they stop breathing. This gives the patient power over their own healthcare—which includes the right to die—and mitigates suffering by offering peace of mind.

Cultural competency and self-determination

Another factor for clinicians to consider when providing end-of-life care is each patient’s cultural and religious beliefs. When clinicians establish cultural competence—the ability to implement care with a patient’s cultural, religious, and social needs in mind—the quality of care improves.

The importance of cultural competence in healthcare extends to patients’ mental health and daily life. According to a 2021 article published by StatPearls, health-related anxiety diminishes in patients when they can turn to their faith.

Religion and spirituality inform some patients’ healthcare decisions regarding diet, medicine, modesty, and gender of their health providers. They can also inform practices surrounding death. For example, several religions strictly prohibit euthanasia, including Mormonism, Hinduism, Islam, Jehovah’s Witnesses, and others.

The influence of religion

On the other hand, physicians may legally refuse to provide certain types of standardized care that aren’t conducive to their own religious beliefs. This is often the case for Catholic doctors who refuse to perform abortions or sterilizations, as written in an article published by the American Medical Association Journal of Medical Ethics.

Doctors who choose not to provide emergency treatments based on conscience laws may be subject to tort liability, giving patients who are harmed by medical inaction the opportunity to sue for medical malpractice.

To avoid this situation altogether, physicians can abide by transparency requirements and protect patients from medical refusals by informing them about the practice. Patients may then seek appropriate care elsewhere, if possible.

Increased cultural competency and better palliative care options for patients of specific faiths is dependent on education. Patient care improves when physicians acquire cultural competence through proper training. Healthcare institutions fare better overall when their staff, including non-clinicians, are prepared to notify patients about medical refusals and a patient’s right to self-determination.

How medical ethics can aid physicians in palliative care

When doctors face ethical dilemmas regarding palliative care or a patient’s right to die, they can look to the universal ethical principles for guidance. According to SAGE Open Medicine, these principles include autonomy, beneficence, nonmaleficence, fidelity, and justice.

Medical ethics hinge on a healthcare professional’s ability to respect the autonomy of their patients. Autonomy, which is a patient’s right to self-determination, can be protected by advance directives before a patient loses the ability to create one. Patients have the right to terminate or refuse treatment altogether, which physicians should support out of respect for patients’ autonomy.

Reducing harm

When a patient no longer has the ability to create an advance directive, doctors must pursue treatment plans most beneficial to the patient. Physicians in this position can practice nonmaleficence by choosing care plans that cause the least possible amount of harm.

Justice and fidelity are served by doctors who are honest with their patients about prognoses and care options, including a patient’s right to terminate treatments. Truth-telling, as well as fair distribution and knowledge of health resources, is necessary in order to effectively respect patients’ self-determination.

While “dying badly” is still the norm in most of the US, there are 10 jurisdictions in which patients can pursue medical-assisted deaths. According to the Yale Journal of Biology and Medicine, Oregon, Montana, New Jersey, and Colorado are just a few.

What this means for you

Where legal, physicians can inform patients of their right to self-determination, granting them peace of mind and control in their final days. Regardless of your own spiritual or religious beliefs, acquiring cultural competence will improve the care physicians provide to patients. Finally, when end-of-life care presents physicians with ethical challenges, they can take a cue from the five ethical principles guiding healthcare professionals: autonomy, beneficence, nonmaleficence, fidelity, and justice.

Sources

  1. Akdeniz M, Yardımcı B, Kavukcu E. Ethical considerations at the end-of-life care. SAGE Open Medicine. 2021;9:205031212110009.
  2. Campbell CS. Mortal responsibilities: bioethics and medical-assisted dying. Yale J Biol Med. 2019;92(4):733-739.
  3. Familydoctor.org editorial. Advance Directives and Do Not Resuscitate Orders. Familydoctor.org. 2021.
  4. Kogan R, Kraschel KL, Haupt CE. Which legal approaches help limit harms to patients from clinicians’ conscience-based refusals? AMA Journal of Ethics. 2020;22(3):209-216.
  5. Swihart DL, Yarrarapu SNS, Martin RL. Cultural religious competence in clinical practice. In: StatPearls. StatPearls Publishing; 2022.

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The pandemic changed death rituals and left grieving families without a sense of closure

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The unexpected death of a friend and colleague to COVID-19 in January 2021 led me to start researching how American death rituals were transforming during the pandemic. My friend was Hindu, and while watching his funeral on Zoom, I witnessed the significant transformations that had to be made to the traditional rituals to accommodate COVID-19 safety guidelines.

In the spring and summer of 2021, I conducted over 70 hours of oral history interviews with people involved in the medical and funerary professions, as well as grieving families and those who worked closely with them, including grief counselors, hospice workers and even spirit mediums.

As a historian of religion interested in how different cultures make sense of death, I noticed what appeared to be a momentous cultural shift happening in America in terms of death rituals as over 850,000 Americans died from COVID-19. During this period, funerary customs dramatically shifted and, in many cases, failed to bring any comfort to grieving friends and families.

What changed in funerary rituals

In my conversations, funerary professionals described the initial chaos as funeral size had to be dramatically curtailed, sometimes with only one to two hours’ notice. Eventually, many began to innovate with new technologies that allowed them to hold virtual funerals.

Richard Davis of the Cook-Walden Funeral Home in Pflugerville, Texas, described how early in the pandemic he utilized radio technology for grieving families who could be in their cars in the parking lot, tune the radio to a specific station and listen to the person giving the eulogy inside the funeral home.

Some funerary directors partnered with wedding videographers whose business was suddenly upended because most weddings were canceled or delayed. These videographers found that the high-quality equipment used to produce wedding videos could as easily be put to use broadcasting a Zoom funeral.

I also spoke with three spirit mediums who all described a marked increase in clients seeking postlife words from loved ones who died on ventilators. They described how anguished families sought to know that their loved one had not died alone and did not blame them for their death. One medium in particular also noted that the pandemic saw an increase in family members seeking to connect with those who had died of drug overdoses brought on by the stress of the pandemic.

The end-of-life work of religious leaders was transformed as well: Catholic and Episcopal last rites were performed via FaceTime, sometimes with consecrated oil being carefully administered by a Q-tip.

The Jewish tradition of sitting with a body before burial – usually performed by volunteers in shifts at the funeral home – became an at-home experience. Although the volunteers, called shomer or shomeret in Hebrew, could not sit next to the body as usual, they worked on the honor system to ensure that someone was always praying and keeping the deceased in their thoughts, even while far away.

Muslim leaders described working with local health agencies to obtain Personal Protective Equipment (PPE) and specialized training for those performing the full-body washing of a corpse known as ghusl in Arabic.

Virtual commemorations

These adaptations reflect a long history of transformations for the American funeral.

In the 17th and 18th centuries, most Americans generally prepared the body themselves and hosted the funeral at home. However, by the 19th century, more Americans were dying in hospitals as a result of the availability of medical care and because the corpse was believed to be carrying disease. This spurred the development of the funeral home. Individual funeral homes often personalize their offerings to the needs of local cultural or religious communities.

Funeral homes became most popular after embalming – a form of preservation performed by mortuary specialists – became the norm after the Civil War. The war spurred a crisis to preserve soldiers’ bodies while they made the long trip home, and embalmers would sometimes follow the military troops to accept payment in advance for the procedure.

Today, the funeral industry has grown to a whopping US$20 billion, and embalming remains the predominant treatment for the body after death.

With the rise of the internet, funerals are once more undergoing rapid transformations. Scholar of death and dying Candi Cann has shown how the internet gives rise to new forms of social remembrance after death. These can include mourners going to Facebook or Instagram pages on the anniversary of the death and leaving a message about how much they miss the deceased. Online marketplaces allow for the purchase of individualized mourning paraphernalia like T-shirts or bumper stickers, and public memorials at the site of death.

Photographs of people stacked one behind another in a park.
People tried to memorialize their loved one in different ways. Images of COVID-19 victims from Detroit are displayed in a drive-by memorial at Belle Isle State Park. Aaron J. Thornton/Getty Images

Such tools thrived during the pandemic. During my research, several individuals who lost loved ones explained creating memorial items, including stickers and face masks commemorating a lost loved one, as a way to encourage others to wear masks. Virtual online communities of COVID-19 mourners adopted the yellow heart as a public expression of loss of a loved one to the pandemic in the U.S. and Europe.

Unprocessed grief

Funerals and other rituals surrounding death are important to begin the grieving process. Research has found that performing rituals has a major role in alleviating grief through increasing feelings of control and transitioning mourners to accepting their loss. Funerals can provide important structures for families to say goodbye that have been correlated with better grief outcomes.

J.Z. Smith, one of the most influential theorists of religion in recent years, said that “ritual relies for its power on the fact that it is concerned with quite ordinary activities placed within an extraordinary setting.” In other words, ritual takes elements from the ordinary world – words, gestures, symbols, etc. – and imbues them with extraordinary meaning.

We might cry or wear black clothing every day for any number of reasons, but in funeral rituals these activities have special significance and bring a sense of closure. It is this repurposing of ordinary things that makes rituals so effective.

Psychological studies too have shown that the greater the difference between what happens in the ritual and “normal” life, the more effective it is for individuals.

But in my conversations with those who lost loved ones to COVID-19, it became apparent that for many, the transformations in funerals and rituals of mourning failed to help them in dealing with their grief. As one individual explained to me, “I knew my grandmother would pass away sometime, but I always imagined I would be there; I never imagined I would be watching it virtually on Facebook. It felt like a parody of a funeral.”

Another interviewee explained how the isolation necessary in the pandemic era fundamentally undermined the comfort these rituals could provide: “Because my family has been so terrified of COVID, we have not been able to gather together to process my mother’s death. That has been really hard for me culturally – especially in Indigenous families, you grieve together.”

Reverend Richard R. Andre, C.S.P. of St. Austin Catholic Parish in Austin, Texas, echoed these thoughts as he described assisting those losing loved ones in his own spiritual community: “The funeral helps you to start a process of closure. But without the funerals they envisioned, people are just getting stuck and are unable to grieve.”

The COVID-19 pandemic has forced us to consider how rituals can lose their extraordinary power when our sense of “normal” is shattered and remains shattered for years. As religion theorist J.Z. Smith noted, rituals work by framing the ordinary as extraordinary. But if nothing feels normal, then nothing can feel extraordinary either.

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