Category: COVID-19

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For Older Adults, Smelling the Roses May Be More Difficult

By Judith Graham

The reports from covid-19 patients are disconcerting. Only a few hours before, they were enjoying a cup of pungent coffee or the fragrance of flowers in a garden. Then, as if a switch had been flipped, those smells disappeared.

Young and old alike are affected — more than 80% to 90% of those diagnosed with the virus, according to some estimates. While most people recover in a few months, 16% take half a year or longer to do so, research has found. According to new estimates, up to 1.6 million Americans have chronic smell problems due to covid.

Seniors are especially vulnerable, experts suggest. “We know that many older adults have a compromised sense of smell to begin with. Add to that the insult of covid, and it made these problems worse,” said Dr. Jayant Pinto, a professor of surgery and specialist in sinus and nasal diseases at the University of Chicago Medical Center.

Recent data highlights the interaction between covid, advanced age and loss of smell. When Italian researchers evaluated 101 patients who’d been hospitalized for mild to moderate covid, 50 showed objective signs of smell impairment six months later. Those 65 or older were nearly twice as likely to be impaired; those 75 or older were more than 2½ times as likely.

Most people aren’t aware of the extent to which smell can be diminished in later life. More than half of 65- to 80-year-olds have some degree of smell loss, or olfactory dysfunction, as it’s known in the scientific literature. That rises to as high as 80% for those even older. People affected often report concerns about safety, less enjoyment eating and an impaired quality of life.

But because the ability to detect, identify and discriminate among odors declines gradually, most older adults — up to 75% of those with some degree of smell loss — don’t realize they’re affected.

A host of factors are believed to contribute to age-related smell loss, including a reduction in the number of olfactory sensory neurons in the nose, which are essential for detecting odors; changes in stem cells that replenish these neurons every few months; atrophy of the processing center for smell in the brain, called the olfactory bulb; and the shrinkage of brain centers closely connected with the olfactory bulb, such as the hippocampus, a region central to learning and memory.

Also, environmental toxic substances such as air pollution play a part, research shows. “Olfactory neurons in your nose are basically little pieces of your brain hanging out in the outside world,” and exposure to them over time damages those neurons and the tissues that support them, explained Pamela Dalton, a principal investigator at the Monell Chemical Senses Center, a smell and taste research institute in Philadelphia.

Still, the complex workings of the olfactory system have not been mapped in detail yet, and much remains unknown, said Dr. Sandeep Robert Datta, a professor of neurobiology at Harvard Medical School.

“We tend to think of our sense of smell as primarily aesthetic,” he said. “What’s very clear is that it’s far more important. The olfactory system plays a key role in maintaining our emotional well-being and connecting us with the world.”

Datta experienced this after having a bone marrow transplant followed by chemotherapy years ago. Unable to smell or taste food, he said, he felt “very disoriented” in his environment.

Common consequences of smell loss include a loss of appetite (without smell, taste is deeply compromised), difficulty monitoring personal hygiene, depression and an inability to detect noxious fumes. In older adults, this can lead to weight loss, malnutrition, frailty, inadequate personal care, and accidents caused by gas leaks or fires.

Jerome Pisano, 75, of Bloomington, Illinois, has been living with smell loss for five years. Repeated tests and consultations with physicians haven’t pinpointed a reason for this ailment, and sometimes he feels “hopeless,” Pisano admitted.

Before he became smell-impaired, Pisano was certified as a wine specialist. He has an 800-bottle wine cellar. “I can’t appreciate that as much as I’d like. I miss the smell of cut grass. Flowers. My wife’s cooking,” he said. “It certainly does decrease my quality of life.”

Smell loss is also associated in various research studies with a higher risk of death for older adults. One study, authored by Pinto and colleagues, found that older adults with olfactory dysfunction were nearly three times as likely to die over a period of five years as seniors whose sense of smell remained intact.

“Our sense of smell signals how our nervous system is doing and how well our brain is doing overall,” Pinto said. According to a review published earlier this year, 90% of people with early-stage Parkinson’s disease and more than 80% of people with Alzheimer’s disease have olfactory dysfunction — a symptom that can precede other symptoms by many years.

There is no treatment for smell loss associated with neurological illness or head trauma, but if someone has persistent sinus problems or allergies that cause congestion, an over-the-counter antihistamine or nasal steroid spray can help. Usually, smell returns in a few weeks.

For smell loss following a viral infection, the picture is less clear. It’s not known, yet, which viruses are associated with olfactory dysfunction, why they damage smell and what trajectory recovery takes. Covid may help shine a light on this since it has inspired a wave of research on olfaction loss around the world.

“What characteristics make people more vulnerable to a persistent loss of smell after a virus? We don’t know that, but I think we will because that research is underway and we’ve never had a cohort [of people with smell loss] this large to study,” said Dalton, of the Monell center.

Some experts recommend smell training, noting evidence of efficacy and no indication of harm. This involves sniffing four distinct scents (often eucalyptus, lemon, rose and cloves) twice a day for 30 seconds each, usually for four weeks. Sometimes the practice is combined with pictures of the items being smelled, a form of visual reinforcement.

The theory is that “practice, practice, practice” will stimulate the olfactory system, said Charles Greer, a professor of neurosurgery and neuroscience at Yale School of Medicine. Although scientific support isn’t well established, he said, he often recommends that people who think their smell is declining “get a shelf full of spices and smell them on a regular basis.”

Richard Doty, director of the University of Pennsylvania’s Smell and Taste Center, remains skeptical. He’s writing a review of smell training and notes that 20% to 30% of people with viral infections and smell loss recover in a relatively short time, whether or not they pursue this therapy.

“The main thing we recommend is avoid polluted environments and get your full complement of vitamins,” since several vitamins play an important role in maintaining the olfactory system, he said.

Complete Article ↪HERE↩!

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How unresolved grief could haunt children who lost a parent or caregiver to COVID

The number of U.S. deaths from COVID-19 has surpassed 775,000. But left behind are tens of thousands of children — some orphaned entirely — after their parents or a grandparent who cared for them died. In this report co-produced with the NewsHour, Kaiser Health News correspondent Sarah Varney looks at the risks these grieving children face to their well-being, both in the short and long term.

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Prolonged grief disorder recognized as official diagnosis.

Here’s what to know about chronic mourning.

By Jelena Kecmanovic

With the United States surpassing 727,000 deaths from covid-19, the disease caused by the coronavirus, millions have been left grieving the losses of their loved ones. As a psychologist, I bear witness to the emotional and physical pain, sadness, anger, fear, isolation and struggle of those who mourn. They often feel like there is a wall between them and the rest of the world, like our accelerated, progress- and positivity-centered society does not allow for grieving and honoring the deceased.

The pandemic has made things worse, with relatives barred from supporting the dying, and religious and cultural mourning rituals disrupted or impossible. “In the current environment, we are likely to see more people whose grief doesn’t lessen with time, and whose intense suffering disrupts their ability to function,” said Holly G. Prigerson, professor of sociology in medicine at Weill Cornell Medical College in New York City, and a co-author of “Bereavement: Studies of Grief in Adult Life.”

Prigerson’s studies over the past three decades, along with other research from the United States, the United Kingdom, the Netherlands and Australia, among others, have led to the inclusion of a new disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) — the main guide for diagnosing mental health problems. The American Psychiatric Association recently announced that prolonged grief disorder (PGD) will be added to the newest version of the manual, DSM-5-TR.

What is prolonged grief disorder?

Grief is a natural human reaction to the death of a loved one. It tends to come in waves, often triggered by internal or external reminders of the loss — that’s why anniversaries or holidays can be particularly difficult. It is also idiosyncratic, hence the maxim that there is no one right way to grieve. For some people, talking a lot about the deceased is healing, while others benefit from more interior mourning.

While most people have a hard time after a death, over time they are able to accept the loss, find meaning in life without the deceased and reintegrate into society. They find new ways to love and work.

“But for a small but significant group of people, grief doesn’t resolve. It is ongoing, pervasive, intense and debilitating,” said Katherine Shear, professor of psychiatry at the School of Social Work and founding director of the Center for Complicated Grief at Columbia University. “This is what we call prolonged grief disorder.”

PGD can be diagnosed no sooner than one year after the death of a loved one, and it is defined by a daily, intense yearning for the deceased or a preoccupation with thoughts or memories of them. Additional symptoms — three of which are required for a diagnosis — are identity confusion, disbelief, avoidance of reminders of the loss, intense emotional pain, difficulty engaging with others and with life, emotional numbness, feeling that life is meaningless, and intense loneliness.

Although PGD is newly designated as a disorder, similar conditions have been documented and investigated for many years, usually called “complicated grief.”

Why is it important to recognize prolonged grief disorder?

About 1 in 10 people who have lost someone struggle with PGD. Until now, many of them might have wondered what was wrong with them and whether they could get better. “People ask us, ‘Am I going crazy?’ all the time, and having PGD recognized will validate their suffering and show them there are others suffering in a similar way,” said Natalia Skritskaya, a clinical psychologist and associate research scientist at Columbia’s Center for Complicated Grief.

Although PGD shares some symptoms with depression and post-traumatic stress disorder (PTSD), it is “neurobiologically and epidemiologically different,” Prigerson said. “It has a distinct pattern of symptoms and different treatments.”

PGD puts people at higher risk for medical problems (cancer, high blood pressure, heart or immunological issues), other mental health disorders, disability, hospitalization and suicide. The DSM classification will help health-care professionals identify those who suffer from PGD so that they can properly help them.

All the while, we need to be careful not to pathologize grief. “We run a risk of stigmatizing the grieving, reducing their dignity and medicalizing the natural process,” said Allen Frances, a professor and chairman emeritus of the Department of Psychiatry and Behavioral Sciences at Duke University School of Medicine and the author of “Saving Normal.” “Some practitioners, especially in primary care after a 10-minute visit, might overuse the new label, over-diagnose and overprescribe

So, always ask questions and advocate for yourself or your loved ones if you feel like medical providers are not taking time to listen and understand.

What makes people more susceptible to PGD?

Research has identified several factors that complicate grief. If you were very dependent on the deceased for practical or emotional needs, or if your world revolved around them, the loss can be hard to process. On the other hand, difficulty remembering positive traits of the deceased can also prolong grief.

“Sudden and traumatic deaths, and deaths by suicide, are more likely to lead to complicated grief,” Skritskaya said. “If the grieving person is dealing with multiple losses, poor social support, has a lot of stress in their life, or a history of psychological disorders or prior trauma — those are risk factors, too.”

Also likely to worsen grief: chronically avoiding thinking about the loss; or getting stuck in a ruminative cycle asking why this has happened to you, or wondering whether you could have done something different. Judging oneself for experiencing negative emotions related to grief is not helpful either

What are the treatments?

Treatments for complicated grief have been investigated since the late 1990s and practiced for much longer. “Research showed that neither antidepressants nor standard depression-focused therapy are very effective for complicated grief,” Shear said. “That’s why we developed complicated grief treatment.”

Shear’s integrative treatment helps patients understand and accept grief, manage emotions, strengthen relationships, create a coherent story of the death, live with reminders and feel connected with people who died, and begin to see a promise in the future. It was shown to help a majority of people with PGD.

Robert Neimeyer, professor emeritus of psychology at the University of Memphis, director of the Portland Institute for Loss and Transition and co-editor of “Grief and Bereavement in Contemporary Society,” finds that the most important goals of complicated grief therapy are to develop a narrative of what happened, to revise and re-create one’s relationship with the loved one, and to reinvent oneself. “After loss, we need to reconstruct life meaning and find a way to reinvest in living,” he said.

A 2014 Australian study found that grief-focused cognitive behavior therapy helped those with PGD. The therapy included noticing thinking traps that get us mired deeper in grief, gradually approaching previously avoided situations that had reminders of loss, and scheduling social and other enjoyable activities. A version of this treatment that also focused on recurrent vivid recounting of how the loved one died was particularly effective.

And I have found that, in situations in which PGD is related to guilt, regret or a sense of unfinished business with the deceased, writing a letter or having an imagined conversation with the lost loved one can be a powerful aspect of treatment.

While psychotherapy is a first-line treatment for PGD, antidepressants can be helpful with the depression that often accompanies complicated grief. Grief support groups are also recommended, especially when they involve mourners with similar grief stories.

Complete Article ↪HERE↩!

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Grief-induced anxiety

— Calming the fears that follow loss

By Jessica DuLong

Millions of Americans are grieving loved ones taken by Covid-19. Yet even outside of a pandemic — with its staggering losses of lives, homes, economic security and normalcy — grief is hard work.

“The funny thing about grief is that no one ever feels like they’re doing it the right way,” said therapist Claire Bidwell Smith, author of “Anxiety: The Missing Stage of Grief.” But there is no right way, she insisted. The only “wrong” way is to not do it.

What often trips people up is misattributing the sensations of grief-related anxiety to some unrelated cause. “Probably 70% of my clients have gone into the hospital for a panic attack following a big loss,” Smith said.

After doctors rule out physical illness, clients come to her for counseling, frequently struggling to understand the link between their physical symptoms and bereavement.

This becomes especially problematic in grief-averse places like the United States, Smith explained.

With over 4 million reported Covid-19 deaths reported worldwide since December 2019, grief and loss have touched an untold number of hearts and minds. Smith recommends connecting the dots between loss and anxiety as a critical first step toward healing.

This conversation has been edited and condensed for clarity.

CNN: How are grief and anxiety related?

Claire Bidwell Smith: When some big change comes seemingly out of nowhere and disrupts life, we realize we’re not safe, things aren’t certain, we’re not in control.

All of that is true all of the time, but loss is a huge reminder. The life changes and emotional upheaval are so much bigger than most people understand. Grief, which is the series of emotions that accompany a significant loss, can drop you to your knees. That feeds anxiety.

Grieving people can begin feeling anxious about their own health or the safety of other loved ones. Sometimes, they don’t even realize what they are experiencing is anxiety or is in any way related to their grief.

Anxiety, a psychological condition that causes fear and worry, can present with many physical symptoms. These can be misleading, making you think you have heart palpitations, a stomach issue, a new sweating problem, headaches, insomnia. Many people think they have a medical problem and not an emotional one.

CNN: How do you help people ease their grief-related anxiety?

Smith: My first job is to help people connect the dots between their loss and their fears by tracing their anxiety on a time line: When was I last anxious? How were things before my loved one died?

If the loved one had a long illness, the anxiety might begin before the death. After a sudden death, the anxiety might start right away. Usually if someone’s going to veer into anxious territory, it’s something that happens quickly following loss.

Some people I see, who have never had anxiety in their lives, suddenly begin to have panic attacks right after the death of a loved one. Others, long familiar with anxiety, see symptoms really ratchet up after a loss, or maybe take on new manifestations.

CNN: What coping strategies can people use?

Smith: Seeking out support is really vital. There are so many more support groups and grief therapists available right now. And because of the pandemic, many are available virtually. You can often find support online and start tomorrow. If the therapists or groups you find are booked, get on a wait list. It’s never too late to work through your grief.

If people don’t seek out help to untangle their emotions, they get stuck in anger or guilt. Those play out in substance abuse, depression and anxiety, in relationship issues and in trouble at work and school. So, the domino effect of trying to muscle through and not seeking out support isn’t good.

CNN: What advice do you have for those resistant to formal mental health treatment?

Smith: Self-guided online courses are one option that many therapists provide. Even reading articles or books or listening to a podcast about grief can normalize your experience and help you give you more permission to mourn. You can feel like you’re going crazy, like something else is wrong with you, when really, it’s grief.

Social media offers so many grief resources. A simple search on Instagram for #grief can help you find solidarity with others. Even just reading about other people’s experiences through their posts and comments is valuable because it can help you realize you’re not alone.

CNN: Because of the pandemic, so many people have been unable to be with their dying loved ones. What impact might that have?

Smith: We will see more complicated grief, with extended periods of grieving where people may get stuck in a loop of guilt or regret or anger. That comes, in part, from the feeling that a lot of the losses were preventable, and because people were forced to say goodbye to loved ones over Zoom and FaceTime with nurses wearing masks and face shields. Those kinds of endings can lend themselves to complicated grief.

Clients I’m working with who have lost a loved one to Covid-19 are feeling anger as they watch people get vaccinated — or choose not to get vaccinated. Everyone’s posting reunion pictures. Someone who lost a parent to Covid a month ago is painfully aware of just how close they were to not having to go through this loss.

Initially, they have to work through shock, anger and guilt. Then we can begin to find new ways to say goodbye. That can look like doing self-compassion exercises or speaking with a pastor, minister or rabbi to work on absolution of guilt. It can involve finding spiritual connections to someone they have lost by writing them letters. I urge people to embrace their own sense of ritual and perhaps even hold memorials.

CNN: What role do meditation and mindfulness play in healing?

Smith: When we are grieving, and when we are anxious, we spend a lot of time dwelling in the past and fretting about the future. Meditation and mindfulness help bring our awareness to the present moment.

Meditation also helps us to understand our own thoughts, and how we can learn to detach from negative ideas and irrational fears.

CNN: You write that imagination can be another powerful tool. How?

Smith: I wasn’t there the night my mother died. Even today, I imagine myself crawling into her hospital bed and holding her and saying the goodbye that I didn’t get to. I’ve found catharsis in envisioning what I would have done, had I been able. But it took me years — definitely more than five — to get to that point.

Just like when athletes envision a course the night before, imagination can almost give your body a sense memory, which can be soothing. But it’s not something that people are ready to do right away.

CNN: What role does story play in coping with grief and loss?

Smith: People carry around stories of loss and death, but they often feel like they are suppressing them because they haven’t found good places to share them. How we hold a story is very indicative of how we feel emotionally. When we are holding a scary story, an uncomfortable story, a story of regret for a long time, it plays out in our day-to-day life.

Healing comes from finding outlets to explore a story and possibly find ways to reframe it. We can do that in therapy, counseling, support groups, online grief forums and grief writing classes, among other places.

CNN: You’ve come to believe that staying connected with our lost loved ones can be more healing than letting go. What does that look like?

Smith: That looks different for everyone, and it isn’t something most of us can do right away — we often just want our person back in front of us. But once they are ready, I encourage my clients to call upon their loved ones, continuing to be in conversation with them internally. There used to be this emphasis on letting go and moving on. Now, I feel it’s more important to move forward with the person you have lost.

For example, pondering: What advice would my dad give me about this job offer? What would my mom think of my new boyfriend?

Developing and fostering a relationship with our person can include sharing stories about them, taking on certain aspects of work they did or doing things in remembrance.

CNN: You quote Hope Edelman, author of “The AfterGrief,” who has said the crux of grief work is making meaning out of loss. Is there a way to foster the meaning-making that can have such lasting value?

Smith: In some ways, that stage comes naturally. However, we can’t get there until we work through guilt, regret and anger that stand in the way of our ability to make meaning. If we’re angry with our loved one or a situation that happened, a lot of people will hold onto that anger because it’s a very powerful emotion.

But I’ve never seen a grieving client who hasn’t questioned life in a new way. Where’s my person? Can they see me? Will I ever see them again? Why am I still here?

It’s really hard to go through huge loss and not have those questions. Those inquiries lead to finding meaning and transformation.

Complete Article ↪HERE↩!

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On the Politics of Death

Global events such as pandemics can momentarily focus attention on a fundamentally overlooked pre-existing human condition: the sheer inequality of how individuals in power decide who lives and who dies.

By: John Troyer

Pandemics make ignoring death harder to do. That doesn’t mean government officials and friends alike won’t symbolically look the other way or reflexively stare harder at their phones during mortality spike events. But the longer any act of ignoring continues, the more obvious the avalanche of death being ignored becomes.

Ignoring something is, of course, different than repressing it. We are acknowledging its existence by ignoring it. We see death. We understand it happens. All of us know people who have died. Everyone reading these words will eventually die.

Which brings me to our current death moment.

The Covid-19 pandemic is but one example from a long list of morbidity and mortality events that momentarily exposed the politics of death for everyone to see. And by everyone, I mean the citizens of every single country on the planet who are suddenly witnessing what those of us who work in death full-time already knew: Our leaders regularly choose to decide who lives and who dies.

Now flip that last statement into a question and one can begin to see the genealogical shadow of Queens and Emperors: Who lives and who dies? Thumbs up or thumbs down? These are foundational and urgent questions that confront modern governments with choices to make on any given day but especially so during a pandemic. The early AIDS epidemic remains a tragic illustration of how different governments decided that the queer communities watching gay men die in unprecedented numbers could be ignored until suddenly those same governments were dealing with a pandemic that remains with us today.

Thanatopolitics, or the Politics of Death

Who lives and who dies are clearly not new questions, but global events such as pandemics can momentarily focus attention on a fundamentally overlooked pre-existing human condition: the sheer inequality of how individuals in power answer those questions.

And while it is correct to state that all biological creatures die at a certain point, that dying is hardly universal in how it impacts different communities. What I’m saying may not come as a surprise, but it is important to foreground this information as a way of stating that when discussing death in the modern Western world, we are often discussing the politics of death. Even if people do not realize this distinction when talking about death and dying — and many people, I believe, do not — the ways end-of-life trajectories become discussed focus on the dynamics causing that death to happen. This distinction matters since understanding how a person died — the core causation of the death, especially during a pandemic — is often laden with political questions around access to care, medical ethics, and economic stability.

While death and dead bodies are obviously connected, the politics surrounding each remains unique and should be distinguished from one another.

This death politics can properly be called a thanatopolitics, borrowing thanato for death from the Ancient Greeks and working with both Giorgio Agamben’s and Michel Foucault’s ideas around biopolitics and forms of life.

What this thanatopolitics of who lives and who dies — with a heavy emphasis here on the “dies” bit — is not is the related concept of necropolitics. The latter is a distinct and important idea first suggested by philosopher Achille Mbembe that more accurately describes the politics of dead bodies (the necro in Ancient Greek). The thanato/necro distinction is crucial in everyday circumstances since the politics of death is often described using the necro- prefix — and while death and dead bodies are obviously connected, the politics surrounding each remains unique and should be distinguished from one another. Dead body politics and death politics occupy distinct experiences for the average person, and recognizing the difference between what death is and what a dead body is remains profoundly important for medicine, the law, and everyday decision making in places such as hospices.

In my book “Technologies of the Human Corpse” I devote the entirety of a chapter to discussing precisely these distinctions between the bio, thanato, and necro, since the politics of each remains simultaneously always visible (if you know where to look) and completely hidden. The book manuscript was completed in 2019, before Covid-19, but spends many pages discussing the ways AIDS both impacted and significantly changed how funeral directors handled dead bodies, e.g., personal protective equipment, or PPE, an acronym we’re all sadly familiar with by now.

By discussing the thanatopolitics of the early AIDS epidemic (which is still happening, lest anyone forgets), it is easy to see how the Covid-19 pandemic ticks all the boxes as to what contemporary thanatopolitics relies on: social and economic disadvantages that contribute to higher mortality rates, especially in brown and black communities; hundreds of thousands of people dying entirely preventable deaths in populations that become economically acceptable deaths (e.g., the elderly and disabled); access to life-saving medical treatments that significantly favor wealthy communities and nations, and so on.

Where Covid-19 thanatopolitics morphed into something I had not predicted was when the emergence of what I call virological determinism became the logic that almost every local, national, and global governing body used to lay blame for preexisting societal problems. This is a gloss on technological determinism, the tendency we humans have to blame any “technology” for causing our very human-created problems, and works much the same way. By taking a rapidly-out-of-control pandemic and mixing in contemporary health inequalities and unprepared — and sometimes negligible — political leaders, we in the West ended up in this thanatopolitical quagmire.

I say quagmire, since it is unclear right now if and when any of this will actually be “done” no matter the speed with which people want to move on. But there are lessons to be learned, and in this way, thanatopolitics can be extremely productive and useful.

The politics of death become a way to acknowledge all those who died and what should be done in the future to prevent more needless deaths. One of those key lessons includes governmental leaders both knowing about pre-existing pandemic response plans and then using those plans when responding to a non-stop mass fatality event such as Covid-19. In addition to following the already extant response plans, leaders should continue to update and renew those plans on a regular basis. HIV/AIDS taught the world how quickly a virus could adapt to everything we threw at it. I remain hopeful that we reflect on that lesson in the coming decades.

Understanding how a person died is often laden with political questions around access to care, medical ethics, and economic stability.

On March 18, 2020, I flew on a plane from the UK (where I normally live) to my hometown in Wisconsin to help my parents with some health issues. I did not know it then, but this was one of the last planes to make that trans-Atlantic flight for many months due to the pandemic.

On the flight, I read an incisive essay by Michael Specter in the New Yorker on the cascading failures of the U.S. health care system. It ends with the following prediction that presciently understood the who-lives-and-who-dies thanatopolitics that defined the past 18 months: “The bigger question is whether we will learn from the fact that this [Covid-19] pandemic will kill many more people than it had to. I’d like to think we would, but, if the past is any guide, this pandemic will end with a bunch of new commissions and ominous reports. As soon as they are printed, they will be forgotten.”

We can choose to ignore death and the thanatopolitics that choice brings for future body counts. But if Covid-19 has demonstrated anything it is that we do so at our own peril.

Complete Article ↪HERE↩!

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How to comfort or show compassion for grieving friends

By Joy Lumawig-Buensalido

SIXTEEN months into the pandemic, so much in our lives has drastically changed. Traditions have been put on hold and common habits and practices have been severely altered—for good or for ill. Why, even dealing with personal losses—ours and those of people we love—has been reduced to stoic acceptance. We can no longer hug or hold hands during such times of upheaval and grief. These days, we must be content with reaching out to the bereaved across the digital space, hoping that offering our sympathies on social media will suffice.

I should know. For some time now, news of friends and acquaintances dying from Covid-19—or from other illnesses—have popped up in my Facebook newsfeeds, Chat and Viber groups. Some of them belonged in my own circle of family and cherished friends. When you have shared history and deep kinship with the “dearly departed,” you are gutted by the loss no matter if you had been prepared for it. Yet, we feel something is quite missing when we try to comfort the family left behind.

Take, for instance, a young coworker who recently lost her thirty-something high-school bestie and groupmate. She and her friends (some of whom are now based abroad) were stunned and felt totally helpless about how to deal with it. They were at their prime; they couldn’t imagine one of their own being gone too soon. They all wanted to reach out and extend some help to the bereaved family but how could they make it special for them?

A virtual mass offering for a departed friend.

That was when I thought of coming up with a brief guide on the simple things we can do when confronted with the sudden demise of someone we want to remember, honor, and send off in a good and memorable way. This may appear to be a distressing topic to some but it is a reality that many of us might experience at some point in our lives.

A few random questions that have been asked of me:

  • Is there an acceptable way of inquiring about someone’s death discreetly and without sounding like one is prying?
  • What is the best way to express one’s sympathy or condolences during the pandemic when even family gatherings are not encouraged?
  • What are the do’s and don’ts when you want to put together a loving and respectful send off to your deceased friend during these restrictive times?

Before Covid (BC), it used to be so simple. When someone we knew died in our town, my parents, or more often my mother, would make it a point to visit that friend’s wake (sometimes held in the homes or in small community chapels). These rituals normally lasted for several days and the expected way of condoling with the bereaved family was to pray for the departed during the evening masses or to just stay a while with the family members.

It was often a chance to meet up and reunite with long-lost relatives and friends. Wakes were both religious and social occasions and people looked forward to being with other members of the community on such events. This explains why town officials and politicians were often expected to drop by and express their sympathies. Visitors would also hand over small envelopes containing their cash contribution to the funeral expenses. This was a long-held tradition and people would give only what they could afford.

Up to the early years of 2000, I witnessed the same simple tradition still being observed in small towns and communities, but the practice evolved over time. These funeral services were eventually held in funeral chapels or memorial parks. It was of course different when a well-known personality or wealthy person passed on because their wake arrangements were often elaborate—and even extravagant—affairs with food catering and flower-festooned buffet tables for the guests.

And then the pandemic came. In the year 2020, funeral wakes and services ceased to be long and protracted events. Only immediate family members—usually 10 at a time—were allowed at such services, especially if the person died of Covid. It was painful, devastating, and terribly difficult for those left behind not to be able to say their proper goodbyes.

These days, thanks to technology, funeral wakes and memorial services have gone digital. Virtual and online masses, novenas, and tributes are increasingly being held by the deceased’s family, friends, and colleagues with the use of Zoom or other online apps. Friends and kin based abroad are now even invited to join.

As for those who are digitally challenged but genuinely want to reach out to the bereaved, here are some basic steps they can take with just their mobile phones.

1. Give some words of comfort but mean what you say.  Prayers, condolences and messages are good but to make it more personal, here are a few comforting words that you can use. The simpler and more heartfelt, the better. You may tweak these according to your own emotions.

“I am so sorry for your loss”

“I wish I had the right words but just know that I care.”

“I don’t know how you feel but I am here to help in any way I can.”

“You and your family will be in my thoughts and prayers.”

“I am always just a phone call or text away.”

2. You may offer some kind of support if you’re very close to the bereaved party. Practical assistance such as help with the funeral arrangements, making phone calls to relatives and friends, sending food to their home, or if they have young kids who need attention, offering to take them into your home for a few days to watch them while the parents are busy.

3. Financial assistance is always a welcome form of support especially if you know that the deceased spent so many days in the hospital and are facing huge medical bills. Funeral costs such as wakes and cremation can also be costly. You could spearhead a fundraising effort among close friends who may want to contribute any amount they can afford and you could collect them and maybe account for it so they know whom to thank later.

4. Finally, try to provide comfort by staying in touch with the grieving person periodically. Your support is more valuable after the funeral services are over or when the other friends and mourners have gone and the bereaved is alone again. Friendship should extend long after the sad loss and it can be through a phone call, a text, a card or note.

What are some words to avoid when condoling with a grieving person?

Try not to say these.

1. “Did she/he die of Covid?” We are living in difficult times.  Don’t make it any harder for the person by putting them on the spot, especially when they don’t want to bare details of the death. If they share the info on their own, just listen quietly without judging. But better to skip this question.

2. I may have been guilty of saying this at times but according to the American Hospice Foundation, we should avoid saying “It’s part of God’s plan.” We cannot assume that everyone has the same beliefs as we do, so it could upset them instead of reassure them. I think you can only say this when you are absolutely sure about her spiritual beliefs.

3. “You should be thankful for what you have…” This may be true from your point of view but right now, they may not see it that way. Remember, they’re in grief and may be highly emotional.

4.“He’s in a better place now.” Or “he is free from all pain, sickness, and difficulties.” Let us refrain from using these statements especially when we do not know how the bereaved feels.

Personally speaking, the best gesture of showing sympathy and condolences are personal prayers. Our prayers are very much needed and appreciated by those who believe in the power of prayers.

So, it is always acceptable to offer masses for the dead (there are mass cards you can get from your parish church) or to sponsor priests to say masses during their virtual novenas or memorial rites. As one priest friend told me recently when he accepted my invitation for him to say mass for a departed friend: “It’s the least we priests can do during these troubled times: to make available the sacraments of the Church to whomever asks for it.”

This is one genuinely sincere way of showing your compassion and good intentions. Whether the deceased is Catholic, Christian or of whatever denomination, prayers and masses will hopefully make everyone, including yourself, feel so much better.

Complete Article ↪HERE↩!

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Reimagining End-of-Life Care During the COVID-19 Pandemic

A team of human-centered designers created Famous Last Words, a toolkit to activate agency and intentional connection during the lonely COVID-19 period

By Allison Fonder

If the COVID-19 era has taught the world anything, it’s that no one is a stranger to drastic change or loss. The early phases of the pandemic in 2020 marked the beginning of an especially frightening time for hospitalizations and death—until somewhat recently, patients with severe COVID-19 had no choice but to enter hospitals alone, many tragically dying after intubation with no family by their side.

When designer and founder of Blumline, Natasha Margot Blum, reflected upon the most urgent healthcare challenge of the pandemic, she gravitated toward palliative care, death, and dying. Designers and volunteers all over the world activated in response to the pandemic. One community of healthcare innovators and human-centered designers formed quickly through a Slack group: the Emergency Design Collective. While there were a number of designers working on critical medical equipment like respirators, Blum and other practitioners began contemplating death and the end-of-life experiences that neither patients nor clinicians desired, but were happening by default due to the rapid acceleration and unpredictability of COVID-19.

In 2020, a storm of tragic stories emerged about emergency medicine doctors being forced to make tradeoff decisions around which patients would receive limited ventilators. In addition, there was a panic around how to store bodies of the recently deceased; these stories ultimately catapulted Blum’s impassioned team into action. Gathering her studio, Blumline, and a group of volunteers from the 2020-formed Emergency Design Collective, Blum went on a search to discover what sorts of contributions to current challenges related to death and family planning could have real impact.

Can we design better discussions around end-of-life experiences?

After some time, Blum’s team decided to focus on creating, as she describes it, a “self-discovery tool” that allowed individuals and their families to have a framework for hard conversations in the context of the pandemic. A tool like this didn’t just feel important as a way to discuss death, but as a way to discuss values and make meaning. As Blum notes, the team’s vision was centered around mental health: “it’s about reevaluating who we are and who we want to be so that we can define our identity, our legacy, and have the most rewarding relationships with the people in our lives while we’re still here.”

The team created the framework for what is now Famous Last Words, a website and downloadable playbook designed to facilitate a discovery process for each participating person, and to learn alongside their loved ones. Blum shares, “we created a delicately sequenced conversation, structured with and toward the core principle of agency. People choose their questions, their co-conspirators—the people with whom they want to embark on this learning journey—and the timing themselves. It’s a three-event series that culminates in tougher ethical questions around care at the end. You can’t ask people to start with the tactical first. Traveling from abstract to concrete, as we do in the design process, is essential.”

The document thoughtfully guides family and friends through questions and reflections on life, defining a “good death”, as well as clarifying needs and wishes. Participants are encouraged to conduct these conversations via Zoom in at least three sessions, and create an artifact of notes and memories that can guide care if health deteriorates rapidly, and create a beautiful record when someone does die.

Rapid prototyping & remote-first conversations

The team also implemented the use of technology like Marco Polo, an app that lets people string together video recordings of themselves with notes in their rapid prototyping process. Platforms like Marco Polo not only allow participants to spend more time ruminating on these deep questions, but they also inadvertently create an ephemeral video log of memories and reflections that vividly illustrate a person’s network of care. In the product’s final form, Famous Last Words is platform-agnostic—whether Zoom, Marco Polo, or WhatsApp works best is up to what’s most comfortable for the group.

Marco Polo is used to answer questions within Famous Last Words and create a living narrative during a prototyping experiment with a group of mothers for feedback (who are concerned about generations above and below them in their families).

The Famous Last Words guidebook helps loved ones navigate critical medication conversations, while also recognizing how these conversations are often stopped in their tracks due to their emotional weight and our discomfort with the topic. As Blum puts it, “The whole premise [of Famous Last Words] is that it’s up to you to own your story. This pandemic offers us an opportunity to activate a culture of intentional agency in a time where many people feel like they really don’t have any. And that feeling of helplessness and hopelessness is one that results in unnecessary, and sometimes undesired care. If somebody doesn’t understand the implications of what it means to choose a ‘do not resuscitate’ versus another form of care, that can lead to a lot of challenges. So we’ve tried to build that in the best way possible to guiding people while allowing them space, time, freedom, and ultimately giving them the stimulus.”

Research

Blum and her team’s work at Blumline starts with research, which was an important tenet for a project as serious as Famous Last Words that also required a quick turnaround. The team’s first step was reaching out to workers on the front lines during the pandemic, people like emergency medicine physicians, hospice and palliative care doctors, therapists, and people who lost loved ones. After those conversations and creating a journey map, Blum said with COVID “it became very clear once you cross the threshold into the hospital, your agency decreases immediately. So clearly, the greatest opportunity space is before that happens, and that means we’re working way upstream.”

Once they landed on wanting to focus on facilitating end-of-life conversations, the team began a series of different diary studies and competitive audits in order to sensitively explore questions like, how should the conversation be structured, with a trained moderator or as a mutually-led group conversation? What is the best way to frame death within a guidebook that addresses it so heavily? After rapid prototyping a number of potential solutions, the team decided to create a document that lived on its own in PDF form so it was as accessible as possible.

The journey map that illuminated the real window of agency in the progression of COVID-19 and hospitalization.

Challenges

With such a deeply contemplative mission, it’s easy to see why it would require a dedicated group of volunteer designers to bring something like this to life—but it brings up interesting questions as to how medical professionals must prioritize aspects of care to treat as many people as they do. Projects like Famous Last Words demonstrate that there’s much more room for designers to intervene and allow space for medical systems to explore deeper questions. As Blum puts it, “health care providers don’t think about care in a reductive way, but that’s the way that our healthcare system works—it is fundamentally structured in a way that doesn’t give us a lot of room to engage in care that doesn’t produce an immediate result, relief of a symptom or a situation, and death, dying, and care just doesn’t fit into a clean, idealized silo at all.”

Famous Last Words’ current solution to this problem is to generate support from one’s own personal connections and curious, like-minded people. Conversations are led by friends and family rather than medical professionals, illuminating the power loved ones have in ensuring a person’s death is handled with care. Blum says “There are so many amazing care providers, but a lot of care and certainly a lot of decisions happen in non-transactional, peer-to-peer moments. We don’t have economic structures or incentives to manage care the way we’d ideally want to, but that’s where community organization comes in, and support from pioneers like end-of-life doulas, and radically innovative remote palliative care.”

Famous Last Words guides people to explore the origin of their beliefs around death and dying, introducing a range of provocations and stimulus to spark creativity.

This project serves as a helpful reminder to us all, especially in these fragile times, that it’s crucial to band together as a community to care for our own. Secondly, it’s more important than ever to engage more with the concept of death, and make conversations around what we want for our own end-of-life experience easier. “We’re all going through this together and so it doesn’t make sense to narrow down to a very specific design audience when everyone is thinking about their mortality. That’s why we solicited perspectives from people who had family members or loved ones who were very resistant [to that conversation] so that we could understand how to soften the tone and soften the perception of confrontation,” Blum said. And of course, the team aimed to give the topic the meaningful weight it deserves. Dan [Tuzzeo, design researcher and content strategist] put it beautifully: “it was important to strike a balance between normalizing the conversation while still respecting the subject matter—and the people having the conversation.”

With the delta variant creating yet another curve in this saga, this is still just the beginning of an opportunity to embrace a “re-design your life” mindset, rethinking what life is, and what kind of healthcare and dying experiences are possible.

For anyone who wants to uncover their own values, legacy, and boundaries (which is everyone, the team hopes) while engaging in a meaningful conversation about life and death, Famous Last Words is a great resource—you can access the Famous Last Words playbook here.

Complete Article ↪HERE↩!