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Coming to terms with a patient death

By Ben Pilkington

Death, of course, is a part of life for everybody. And for doctors, death comes with the territory of being a healer. Despite enduring more exposure to death than most, physicians still experience strong and lasting emotional reactions to it, including intense feelings about their own professional responsibility and competence.

COVID-19 brought this burden on doctors and other healthcare workers into sharp focus. Healthcare workers are dealing with mass mortality at a time when patients need more help than ever, but fewer resources are available to treat them.

This article examines how patients’ deaths affect their physicians, and how deaths from once-in-a-generation catastrophes like COVID-19 have complicated these encounters. We look at the stigma surrounding doctors and their emotions, and how such attitudes jeopardize healthy coping. Finally, we explore strategies that doctors can use to deal with patient death.

How do patient deaths affect physicians?

Even the most experienced physicians can have difficulty coping when a patient dies. Despite this—and despite the fact that physicians are confronted with death more than the average person—there is scant research examining how exposure to death affects them.

Available literature suggests that more exposure to patient death is strongly linked with more work-related stress, according to an article published in BMC Medical Education. Stress caused by the death of a patient at work can lead to burnout, which data suggests affects nearly half of all doctors treating terminally ill patients. To make matters worse, a high level of stress negatively impacts the quality of patient care, note the authors of a study published in BMJ Supportive and Palliative Care.

Sometimes, doctors feel the effects of a patient’s death long after it occurs. Feelings of numbness, guilt, and stress after a patient dies are common in the short term, but when surveyed, 61% of physicians reported that the most memorable patient death they witnessed continued to be a source of emotional distress for them in the long term, noted the BMC authors.

Patient deaths in the emergency department (ED) can be especially tough for doctors to deal with. There is typically no established patient-doctor relationship and death can occur suddenly, even in young and otherwise healthy patients, leading to more distress and emotional trauma for the healthcare workers tasked with preventing death from occurring, the authors added.

This takes its toll. According to a survey cited in the BMC article, 28% of ED doctors have considered quitting and 32% have thought about changing professions.

COVID-19 made it harder to cope with patient deaths

Dealing with medical emergencies means ED doctors are typically exposed to more sudden deaths than other physicians. But with the outbreak of COVID-19, doctors were confronted with unprecedented levels of patient death alongside increased demand for healthcare services, fewer resources per patient, and less time to do their jobs.

Together, these stressors are sometimes referred to as “cumulative grief,” a phenomenon that data from the US Department of Health and Human Services (HSS) suggests negatively impacts physicians’ health and the care they provide.

“Under normal circumstances, healthcare workers have more time to grieve and manage stress following the death of a patient. With increased deaths, the behavioral health impact of grief and the risk of burnout increase. This can result in compassion fatigue, low morale, exhaustion, burnout, and errors that could harm patient care,” according to the HHS report. You can read more about compassion fatigue and burnout here.

Systemic attitudes toward physician grief

Physicians recognize the need to help a patient’s bereaved family members and friends cope with death—breaking bad news is part of the job. But there is no standard advice for physicians who need that same support.

Traditional medical culture hasn’t looked kindly upon doctors’ emotional responses to death, notes psychologist, speaker, and author Elaine Kasket of London Metropolitan University, in a blogpost with BoardVitals.

“It is socially ingrained through medical school, and the cultures in both the UK and US medical establishments see a physician’s emotional response to death as a sign of weakness and even incompetence,” she said. “It feeds into this popular image of the physician as some kind of superhuman ultimate rescuer of human life; unable to do his or her job if they give in to or even acknowledge their emotions.”

Confronting this issue requires a fundamental change in the medical community’s perspective and policy. “There needs to be a sea change in medical culture to make support available,” she said, “and for it not to be stigmatized, to help physicians cope with grief, depression, despair or sadness.”

Strategies for coping with patient death

Out of necessity, and often in the place of a glaring absence of strategies in their training, physicians often develop their own ways of coping with their patients’ deaths. Sometimes, these coping mechanisms are unhealthy, such as when a doctor dons a morbid sense of humor (although some researchers maintain humor is healthy), tries to become numb to death, or externalizes the problem, as with alcohol abuse or overeating, according to the BoardVitals blogpost. Click here to read more about the drinking habits of doctors and the pandemic.

According to an article published in the Journal of Graduate Medical Education, oncologists at Memorial Sloan Kettering Cancer Center in NYC responded to the dearth of resources for physicians coping with death by introducing their own method, known as “Patient Death Debriefing Sessions.” Introducing these short sessions gave resident oncologists and other members of the treatment team a practical way to address their emotional needs after a patient died.

Patient death debriefing sessions were less than 10 minutes long, held within 24 to 28 hours of the death, consistently held after each patient death, and led by the attending physician. The sessions focused on residents’ emotional reactions to patient deaths, guided by a pocket card tool.

Memorial Sloan Kettering residents reported finding these sessions to be helpful and educational.

There is no shortage of techniques available—including yoga, mindfulness, exercise, and healthy hobbies—to help physicians relieve some of the stress and personal grief they feel when a patient dies. Read about some of those techniques here. And, of course, any physician needing support can lean on family members and friends, reach out to a counselor, and/or find a grief support group.

Just as important, however, is that doctors must give themselves permission to grieve—and society and the medical establishment can help take pressure off physicians by realizing they may need to grieve in the face of death, like any other human being.

Complete Article ↪HERE↩!

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Preparing Yourself or a Loved One to Die at Home

by Ray Burow

Death is not a fun topic, but failing to talk about end-of-life plans results in a lack of preparation and exacerbates emotional strain when a loved one passes away at home.

If your loved one opts to live out their final days in their house, or if you care for an elderly spouse or parent who’s in the advanced stages of Alzheimer’s disease, they could die at home. Are you prepared? What are your loved one’s end-of-life wishes? Would they choose to pass away at home? Is hospice care an option, or is a hospital setting a better choice for your circumstances? Medicare often pays for hospice care.

Why some people prefer to die at home

Passing away at home is often preferred by critically ill or older individuals. According to the Stanford School of Medicine, studies indicate that 80% of Americans would choose to pass from this life surrounded by what’s familiar to them, preferably at home. However, many don’t get their wish. Only 20% of Americans die at home, while 60% die in acute care hospitals and 20% die in nursing homes.

People prefer to die at home for various reasons, but perhaps control is a primary contributor. The family can manage who comes and goes, providing an opportunity to gather, reminisce, and properly say goodbye. Caregivers administer palliative care in a comfortable, familiar environment rather than one that is foreign and starkly sterile.

Hospice care will assist with pain management, and no heroic actions are taken to resuscitate the patient, who is allowed to slip away. Depending on the laws in your state, you may be able to keep the body at the house for a period of time, and some families may choose to have the funeral at home, too.

How to prepare for a death at home

Preparing to die at home is a process that must occur before the person’s final days. If you or a loved one has been diagnosed with dementia, it is essential to decide in the early days of the condition, while the decision is still yours to make. Caregivers and loved ones, acting as surrogates, can carry out your wishes, but only when they know what they are.

Advance directive

An advance health directive is crucial to securing end-of-life wishes. It’s a legal document containing the patient’s desires. If the patient is incapacitated, the document expresses their values regarding end-of-life processes. These include whether first responders and healthcare professionals will administer CPR, if the patient will donate organs, and what comfort measures will be in place during the dying process.

When a person dies at home unexpectedly and without an advance directive, first responders typically can’t pronounce them dead, as required by law. Paramedics transport the remains to the nearest hospital emergency room, where a doctor will pronounce them. If hospice is in place, the hospice nurse can pronounce the person’s death at home, and the family arranges for a funeral home to remove the remains.

Without hospice, a living will, or an advance directive, the family must call emergency services when their loved one dies at home. Paramedics, possibly firefighters, and police officers will arrive at your home, but only a doctor or coroner can pronounce death.

Understand that without the proper documents in hand, paramedics have to follow protocol and will often begin administering emergency procedures and transport your loved one to a hospital where a doctor with authority to pronounce can do so. There are exceptions to this rule depending on where you live, and in some cases, paramedics are permitted to pronounce.

Following death

Some states require an autopsy when a person dies at home. If the deceased was advanced in age, an autopsy might not be necessary. In either case, you must make arrangements for transportation to a funeral home or crematorium. Don’t be shy to ask about cost. Funeral homes are required by law to provide that information when requested.

There is much more to preparing for death at home than what we can briefly discuss in this column, including the emotional and spiritual aspects and mourning through the grieving process. Mourning is necessary and healthy, and it’s futile to try and skip it. Grief will rise to meet you in unexpected places and at random times. A grief counselor, pastor, trusted friend, or family member can help you through the mourning process. You don’t need to mourn alone.

Complete Article ↪HERE↩!

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I grieve for my mum by making soup. Big or small, our death rituals matter

The pandemic has meant many of us are in mourning, but the things we do help us remember

It’s more what soup represents; it’s warm, it’s comforting, it’s schmeckt

By Eleanor Margolis

For the past few weeks, I’ve been making soup almost constantly. Never has a nervous breakdown smelled so savoury. Maybe not a nervous breakdown, exactly. But I always act oddly this time of year.

Or have done, at least, for the past four years, since my mum died on a November afternoon. This year, in a cyclone of chopped vegetables and stock that I’d attributed to it being “soup season”, it occurred to me that this was actually grief soup.

That I was channelling the sadness of another year without my mum into the repetitive actions – chopping, frying, blending – that come with obsessive soup-making.

It’s not that my mum herself made a lot of soup (although her cooking in general will always be one of my happiest memories of her).

It’s more what soup represents; it’s warm, it’s comforting, it’s schmeckt. Schmeckt is the Yiddish word my mum always used to describe something truly radioactive with flavour.

In a soup (if it’s any good) you have the deep brown savouriness of the stock merged with the sweetness of vegetables such as carrots and onions, and concentrated into pure schmeckt. You basically isolate everything delicious about each ingredient, and put it in a bowl. And it helps that I never feel so close to my mum as when I’m chopping an onion.

As year two of the pandemic starts to wrap up, many millions of people are observing death anniversaries. Most are probably not making vats of grief soup, but we all have our rituals that help us remember those we’ve lost in the best possible light.

I know that anyone who saw a loved one in an ICU with Covid will have two conflicting images of that person.

I visited my mum in intensive care when she was dying of cancer, and the sight of her in a hospital bed, full of tubes, will always be at war with my memory of her bustling around a kitchen, making beautiful smells.

Death rituals, be it those entrenched in different religions and cultures, or those we invent ourselves, are designed to help us remember the good over the unspeakably awful. In November, of course, the entire country becomes enraptured by an increasingly divisive death ritual involving poppies and silence.

At the moment though, I’m still distracted by loss on a personal level. As well as the unofficial remembrance act of soup-making, this year I lit a yahrzeit candle for my mum. This is a Jewish death ritual. We aren’t a religious family at all, but I feel like she’d get a kick out of it.

A candle is standard remembrance fare for a reason; it’s somberly calming to stare into a flame as it dances with life, and think about decrying your mum for picking little piles of dead skin off her feet, only to have her reply, “You’ll miss me when I’m dead”.

After four years, she mostly just feels phenomenally far away. But still – I like to think – out there somewhere, watching me perform my stupid little rituals.

Maybe the dead have ways of remembering the living, too. Light years away, perhaps, my mum is cooking grief soup for me.

Complete Article ↪HERE↩!

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We all deserve a good death

– especially people living with dementia

On International Nurses Day (May 12), I commend the contribution made by all nurses involved in the care of people living with dementia in residential, home and community care, in hospitals and through clinics and health centres.

By Maree McCabe

Dementia is a terminal illness and appropriate palliative care is an essential element of quality care and end of life care for people with dementia, and for their families and carers.

People living with dementia, their families and carers deserve specialist dementia support to plan for and manage their end of life with dementia.

While people living with dementia will unlikely to be able to communicate clearly at their end of life and we may never know how much they can hear, see, feel and comprehend at that time, we need to support them and include them in decisions about their care through the continuum of the disease right through to end of life.

People with dementia share with us they need to have confidence in the system and the people involved in their care because they know they may not have capacity at the end of life to express their wishes. They rely on their families, support networks and healthcare professionals to ensure they receive quality dementia care and experience a good death.

Caring for someone with dementia can be rewarding and emotionally, physically and financially challenging. Families and carers frequently report feeling stressed and confused as to how and where to access end of life care and services, and can feel pressured to make immediate decisions for their loved ones.

Dementia Australia is calling on all sides of politics to commit to a national dementia palliative care program modelled on an evidence-based, nurse-led model of palliative care already successful in South Australia.

The Nightingale Program is the leading specialist dementia palliative care program in Australia and with the support of a federal funding commitment could be expanded across the country.

I acknowledge the support of existing funders, The Rosemary Foundation for Memory Support and Country SA Primary Health Network Ageing Well in Place initiative.

The Nightingale Program clients have access to specialist nurses who provide palliative care strategies and advice to support those living with dementia and their families and care providers. There is a focus on promoting choice and well-being.

The specialist dementia nurses are trained to deliver a person-centred approach to enable people living with dementia to:

  • Stay at home longer and maximise their independence
  • Promote quality of life and positive relationships
  • Have a voice in their future care options and decision making
  • Avoid unnecessary presentations to acute hospital settings
  • Access clinical advice, including co-morbidity management, pain management, delirium and palliation.

The many benefits of the Nightingale Program include:

  • Specialist nursing advice
  • Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
  • Referral to other service providers as needed
  • Continuity of care, offering a single point of contact for guidance
  • Advice provided in home, residential aged care, community and hospital settings
  • Consultation in the development of advance care directives for future health care needs
  • Education and emotional support to support family and carers
  • Interdisciplinary teamwork throughout the health and care networks.

I call on all sides of politics to commit to expanding this program nationally to ensure all Australians living with dementia are supported by staff trained and qualified to provide dementia-specific palliative care.

Improving palliative care for people with dementia, no matter where they live, must be a policy priority Australia-wide to provide peace of mind for the almost half a million Australians living with dementia and the 1.6 million people involved in their care.

Complete Article ↪HERE↩!

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What I felt for years after my young son died now has name

Prolonged grief disorder, a new diagnosis, is to grief what long covid is to covid

By Carol Smith

After I lost my only child more than 20 years ago, I told three lies over and over.

Yes, I’m fine, I said when people asked how I was doing.

I said this in the first year because I was in shock and didn’t have the words to begin to describe what I felt. My son was 7 when I got the phone call that he’d died unexpectedly while visiting his grandparents. The fact I wasn’t there to hold him in his last hours haunted me.

I said it in the second year because by then I’d instinctively absorbed the message that it’s not culturally acceptable to continue to talk about deep sadness more than a year after a loss. It makes people uncomfortable. It makes people feel they should be able to do something; it makes them feel helpless.

I said it year after year to convince others I was okay. I said it to convince myself. It worked, for the most part. Three years after my son’s death, I went back to my job as a journalist for the Seattle Post-Intelligencer. I smiled, laughed even. To the outside world, it looked like I was “over it.” But I was living in my own private snow globe. I avoided relationships, old and new.

The first lie was to protect others. The second was to protect me.

Yes, I’m happy I’ve moved back, I said when people asked about my return to Seattle from California. I said it to deflect deeper conversations about hard decisions. I said it so I didn’t have to talk about why I moved, so I didn’t have to utter the words: My son died. My giggly little boy with eyes the color of maple syrup, who loved trains, and T-ball, and “101 Dalmatians.” My son, who was deaf and helped me see both language and the world around me in a brand-new way. My son, who pressed his hand to mine when we signed I love you, and whose hugs I sometimes still feel in my dreams.

The third lie was the hardest.

No, I don’t have children, I answered for years when people asked. This would later send me into a spiral of shame and agony. “No” felt like denying he had ever lived. “Yes” forced me to explain that he was dead and brought up memories that were still too painful.

These lies kept me frozen for a long time.

It was only recently that the American Psychiatric Association put a name to what I most likely experienced: prolonged grief disorder. The organization included prolonged grief disorder in the updated Diagnostic and Statistical Manual of Mental Disorders (DSM-5) it published in March. The diagnosis refers to intense emotional pain that persists more than a year after a loss. Criteria include numbness, withdrawal, an inability to rejoin the normal stream of life. Those who lose children are at particular risk, as are those who lose a loved one to violence, natural disasters or other tragedies. Those without support systems or who have other significant life stressors are also at risk.

The identification of prolonged grief disorder comes at a time when it may be especially needed. Deaths from covid-19 in the United States have now reached 1 million. With covid’s grim bereavement multiplier, that could mean millions more at risk for prolonged grief. This kind of complicated mourning is essentially to grief what long covid is to covid.

The official inclusion of the diagnosis caps years of debate over whether labeling something “prolonged grief disorder” amounts to pathologizing grief. None of us escapes without losing something or someone we love dearly. The process of grieving a loved one is as individual and idiosyncratic as the person who has died. Critics argue that to suggest otherwise is to indicate that a normal process is a disease.

But lost in this heated discussion is what it’s like to live with deep grief year after year. We are taught to suck it up. We are taught to power through. We get our few days of “bereavement leave,” and then we’re supposed to get back to work. There’s not much of a grace period when it comes to grief. And because of that, long-term grief has been invisible to those who most need to recognize it.

During the pandemic, I attended a virtual conference for families who have lost children. One of the other bereaved moms gave a presentation about complicated grief. She ticked through some of the signs and symptoms: intense yearning that interferes with normal life more than a year after the death, numbness and disbelief, avoidance of social contact, difficulties moving on. It was as though she were describing my life in the 10 years that followed my son’s death.

For the first time, I didn’t feel inadequate for the difficulties I had adjusting to the loss of my only child.

I never received an official diagnosis back then because such a diagnosis didn’t exist. I didn’t even associate many of my behaviors with grief. Neither, apparently, did those around me. No one suggested that my growing social anxiety, my persistent nightmares or my general paralysis in life might have been due to grief. And because of that, I never thought to ask for help. I wish I had. I believe it would have made me feel less alone — less “defective,” not more so. I don’t think the new diagnosis pathologizes grief so much as makes it visible to those who suffer it and to those in their lives who might be able to help. Maybe the best thing that can come from the new diagnosis is not the view that long grief is disordered or maladaptive, but that it exists for some, is a normal response to an abnormal situation and deserves compassion.

We often say of parents who have lost children that they will never be the same. This is necessarily true, as it is for anyone who has suffered a profound loss. But it doesn’t mean we can’t eventually integrate that loss in such a way that life has meaning and joy again. To get there, though, requires all of us to be more aware. Recognizing when someone’s behaviors might be grief-related, even years later, could encourage more of us to talk about it, might make it okay to say Yes, it still hurts, when someone asks how we are doing. It might make it okay to get a little help. And the loved ones of at least some of the million Americans who have died from covid-19 are bound to need it.

Complete Article ↪HERE↩!

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We Need to Talk about Mortuary Makeup

Societal beauty standards follow us to the grave.

By

It’s impossible to aestheticize death, but we still try. Shortly before the pandemic reached lockdown level last year, my 101-year-old grandmother died. When my mom proposed that I help her dress the body for the viewing, I obliged despite the fact that I creep out with ease. My grandmother was such a central figure in my life and I wanted a more private opportunity to say goodbye.

The experience fulfilled that expectation, but it also taught me that the process of prepping a body for burial is a vivid reflection of our relationship with societal beauty standards—an interminable dance that continues even after we die.

When we arrived at the funeral home the day before the viewing, the staircase leading us to the room where her body was kept felt like it spanned miles. What if she suddenly reanimates? If I tugged on a limb too hard, would it detach from the rest of her body? Once we got started, my anxieties were assuaged but my curiosity piqued. I knew that mortuary makeup was a common practice, but I didn’t anticipate how thorough the grooming would be; her skin had to look supple, her cheekbones had to look lifted and her complexion had to appear even and, at minimum, rosy-adjacent, given the circumstances.

The most shocking sight, though, was seeing the funeral director stuff my grandmother’s bra. After eight children and 101 years, the jig on perky breasts had long been up. So, what was the reason?

“I don’t know how I feel about stuffing bras, but it’s definitely something that embalmers do,” says L.A.-based funeral director Amber Carvaly. “It’s very commonplace and the idea is that people will look different laying down. But they’ll obviously look different because they’re dead and they’re lying in a casket.”

In a 2018 episode of Keeping Up with the Kardashians, Carvaly gave Kim Kardashian—who is, by many standards, an archetype of the eternal fascination with youth and beauty—a step-by-step on mortuary makeup. To elucidate the idea behind the practice to me, Carvaly compared it to the philosophy behind Kardashian’s controversial Balenciaga Met Gala look. Basically, we each have distinct signatures that we like to be known by while we’re alive and ideally, these become the attributes that we’re remembered by after we’re gone. Which means that it’s never ideal for a dead person to actually look dead.

“Kim’s image and who she is and what she looks like is so iconic that you don’t even have to see her face or an article of clothing. She can just be draped in black and you know exactly who she is. Like that’s her brand and her icon.”

In the funeral industry, this would be likened to a “memory picture”, a term Carvaly introduced me to during our chat. In essence, it refers to the lasting image of a decedent that’s ingrained in the minds of their loved ones. “It’s a memory of who they used to be,” she explains.

It wouldn’t be a stretch to liken our desire to make the dead look life-like to the ongoing obsession with looking younger, or to attribute the latter to a society-wide fear of dying. This is something that can’t be color-corrected, concealed, or glossed over.

“We are obsessed with image as society and as individuals,” Carvaly says. “But this idea is implanted while we’re alive. As women, we’re so obsessed with anti-aging and it sort of emerges from a fear of death.” Carvaly says that this even shows itself in how beauty trends evolve. “They change to keep us looking younger and if you wear a trend that’s from the past, it dates you,” she says.

We want the memory picture to capture our loved ones at their best, so the measures that we go to to bring corpses to a perceived standard are just symptoms of the widespread idea that younger is always better.

“We’re a death-denying society,” Carvaly adds. “We don’t like to talk about it, we don’t like to accept it, we don’t like to look at dead bodies because all of it just reminds us of our own mortality. We do so much of that while we’re alive, so of course it carries into death. We don’t even want to look at old ladies on screen—we only want to see people when they’re young and beautiful.”

But while this is a reflection of Western culture’s image-conscious underbelly, the process itself was therapeutic for me. My grandmother died overnight and I slept through my mom’s calls and texts to come to the hospital. Helping to dress her felt like an atonement for not being there, beckoning back to times when I would paint her nails, help to pick her church hats, or watch her apply baby powder with a glamorous, fluffy powder puff. It’s how I cared for her and how she cared for herself. “I think that from a standpoint of beauty as a ritual and beauty as a way to care for people, it’s something different. It’s grooming as a form of love instead of beautification to suit industry standards,” Carvaly tells me.

When Carvaly’s friend Maria passed away, applying makeup to her corpse was a way of honoring how she liked to be seen; while she was alive she was seldom seen without a red lip. “If someone had been like, ‘Don’t put lipstick on her!’ or, ‘She’s dead. Don’t glam her up,’ she would have haunted us,” Carvaly recalls.

Both my experience and the concept itself are multifaceted: I was comforted by the ritual, but alarmed at the extent to which it was practiced. We beautify the dead mostly with the living in mind: to filter the intensity of seeing a corpse, to create a comforting pre-funeral ritual, and to pacify the most pressing reminders of our own mortality. But our discomfort with aging and death is tampering with how we live, and that’s something that no amount of makeup can mask.

Complete Article ↪HERE↩!