That Weird Feeling You Have Could Be Because You’re Numbing Out

By Vicky Spratt

How can you comprehend the incomprehensible? I’ve spent much of this week wondering. I understand the horror of the daily death toll but I cannot feel it. I read the words “the United Kingdom is one of the coronavirus death capitals of the world” and nothing happens. Last year, I cried more than once during the daily briefing which used to punctuate my day. Not for myself but for everyone who had lost their life, for everyone who had lost someone they loved. I was actively grieving for others and for something more nebulous: the time lost to the pandemic, the plans rescheduled, the hopes forcibly realigned. I know that I am at once still angry (with our politicians, mainly) and in mourning (for everything) but I am not actively experiencing either emotion.

Last Wednesday, 1,820 people died because of COVID-19. On Thursday it was 1,290. To put that in perspective, around 1,500 people died on the RMS Titanic, a disaster around which our collective psyche has calcified. In two days we saw almost double that. The most commonly flown plane by easyJet is the Airbus A320CEO. These seat between 180 and 186 people at a time. So, on Wednesday, the number of people who were recorded in the daily death toll was equivalent to 10 of those planes falling out of the sky at once.

We had hoped that things would be better by now, even when experts warned us they would not be. It was too much to bear to think they might stay the same but unconscionable that they would get worse. Even if we knew, on some level, that it might happen, we tried not to entertain the possibility.

How could we, when what we are living through barely fits inside our brains, let alone can be broken down, digested and converted into thoughts so that it can be understood. Until Thursday, according to analysis by Oxford University, the UK had the highest per-person daily death toll of any country in the world. Yes, that’s right – it was around twice that of the United States, a country which is roughly 40 times bigger

As the reality of the third national lockdown sinks in, I’m aware of how much smaller my world has become. I move between my desk, my hob, my fridge, my bathroom and my bed. I don’t even go out on the balcony right now because it’s too cold. Yet I’m constantly aware of how big everything that’s happening to our world is. I worry about friends and family. I worry about NHS staff. I worry about the economy. But I do not feel anxiety or anguish like I did during the first lockdown.

The most commonly flown plane by easyJet is the Airbus A320CEO. These seat between 180 and 186 people at a time. So, on Wednesday, the number of people who were recorded in the daily death toll was equivalent to 10 of those planes falling out of the sky at once.

Why? I am stupidly fortunate in so many ways but it’s not like I haven’t experienced this virus at close quarters. I’ve had it twice. And while I was not hospitalised, the second time was particularly bad. It took six weeks to properly recover from and, in the fifth week, I “turned green” and nearly fainted on a short walk. Some days all I can taste is metal. I have aches that make no sense. I know people who have been hospitalised and, in the last two weeks, I know three people who have lost loved ones.

Yet I cannot locate my feelings; I can no longer be certain how any of this is affecting me, what I am able or afraid to feel. I go outside, it feels better. I notice my body rearrange itself. I open up but I still feel…a bit numb.

Perhaps it’s not surprising. It’s not unusual for people who are grieving to experience emotional numbness. On some level right now, we are all grieving for someone or something. David Kessler, the world’s foremost expert on grief, called this very early on in March last year. He explained that, regardless of whether we had been personally affected by the pandemic yet, we were experiencing “collective grief” and “anticipatory grief”. He also noted how unusual it was. “I don’t think we’ve collectively lost our sense of general safety like this,” he said. “Individually or as smaller groups, people have felt this. But all together, this is new. We are grieving on a micro and a macro level.”

That may all be true but should I be worried that I can’t feel? Or should I embrace it as part of the ongoing task of processing the pandemic? I’m hardly alone in finding this lockdown harder to navigate than the others. Last week Ipsos Mori released a survey of 2,000 adults, of which 43% said they were finding things harder right now, with just 10% saying they were finding it easier.

When we haven’t got enough energy left to process what’s going on around us, we push it down to a subconscious level.
— Linda Blair

Clinical psychologist and author of The Key To Calm, Linda Blair, says that feeling numb is actually self-protective. It’s a coping mechanism. “When we haven’t got enough energy left to process what’s going on around us, we push it down to a subconscious level,” she explains. “The body and mind’s first command is to stay alive. You have to remain alert to the dangers around you but you will push down the actual extent of that danger.”

However, Linda notes that while this is very common “at the beginning of a disaster” or immediately in the aftermath of the death of a loved one, “none of us have known a disaster that’s gone on this long. So we keep cycling into numbness which is not normal.”

None of this is to say that numbing out is necessarily bad. “You really have to respect yourself,” Linda explains. “Your instinct knows what you need and if you need to dial down your feelings in order to go about your daily activities right now, then that is what you should do. Yes, it will hit us later. But everyone’s grieving process will be different and it may be that we have to overcome the public health crisis before we can truly process what it means.”

Almost a year into the pandemic and we hear very few cries from people who want things to “go back to normal”. We know now, beyond any doubt, that everything has changed and that the point at which it changed is now an entire trip around the sun behind us.

Yale historian Frank Snowden studies epidemics. He is particularly interested in how they hold a mirror up to society, to the conditions in which they were able to spread. His most recent book, Epidemics and Society: From the Black Death to the Present, is the result of 40 years of research on the topic.

He notes that “epidemic diseases reach into the deepest levels of the human psyche. They pose the ultimate questions about death, about mortality: What is life for? What is our relationship with God? If we have an all-powerful, omniscient, and benign force, how do we reconcile that force with these epidemics that sweep away children in extraordinary numbers?” These are huge questions, all of which are being asked daily as we try to grapple with what’s going on around us.

So as we buffer collectively, perhaps it’s okay that everything that has happened during the last 12 months is taking a while to sink in, just as everything we must prepare for in the future feels impossible to get to grips with. Perhaps it’s okay that we need to conserve our energy to get through the day, rather than exerting it all in anger at the home secretary as she says we should have shut our borders at the start of the pandemic. Perhaps it’s okay to feel a little bit desensitised to it all if it means you can get through the day because, even with the hope brought by vaccines on the horizon, we are still very much in this.

Complete Article HERE!

Crying may help with pandemic stress

— especially if you do it around another person

By Jenna Jonaitis

My husband and I were talking about experiences we have missed out on during the pandemic, such as having hospital visitors when our second son was born, when I surprised us both by bursting into tears. Once I started crying, I couldn’t stop. I sobbed and heaved for at least 20 minutes, as built-up stress and grief flooded out of me. Afterward, I felt a sense of peace, as if some of the weight of this pandemic had been eased — at least in the moments and days that followed.

Many of us have suffered over the past year, in ways both large and small. We’re more isolated than ever, while also taking on new responsibilities, such as remote schooling or working from home without child care. We may be grieving a death or mourning the postponement of a wedding. During these extraordinary times, stress and sadness can accumulate within us, especially if we suppress our negative feelings.

After my sobbing session, I wondered: Could crying be a way to help us cope and release some of that stress? And if so, is it a good idea to make ourselves cry?

The truth about emotional crying

There are three types of tears: basal tears, reflexive tears and psychic tears. Basal tears and reflexive tears keep your eyes healthy by lubricating them and ridding them of harmful irritants, respectively. The tears from crying are psychic tears, which Gauri Khurana, a child, adolescent and adult psychiatrist in New York, defines as “tears that are expelled during an emotional state.”

Certain theories about emotional tears have existed for centuries, such as the popular beliefs that crying removes toxins from the body and always leads to a feeling of catharsis, or emotional release, says Lauren Bylsma, an assistant professor of psychiatry and psychology at the University of Pittsburgh whose research has a focus on crying and emotional functioning. But research about crying is limited, she says, partly due to the difficulty of mimicking emotional situations in a lab and the ethical concerns of studying crying in more natural situations.

Thus far, the idea that crying provides a physical detox or flushes toxins out of the body isn’t backed by solid evidence, Bylsma says. And although catharsis can sometimes occur with crying, it doesn’t necessarily happen all the time.

“It seems that crying occurs just . . . after the peak of the emotional experience, and crying is associated with this return to homeostasis,” she says. “Crying might help aid that stress recovery process, but it may be that it’s only under certain circumstances, depending on the context in which the person cries.” There are other, more important factors that play a role in how people feel after crying, she adds, such as the social support they receive.

Another popular theory about emotional crying that has not been proved by research is that holding back your tears, or not crying despite experiencing grief, is unhealthy.

There is some preliminary evidence suggesting that when people “deliberately suppress their tears and hold it in, that there can be some negative effects of that, both psychologically and potentially physically,” Bylsma says. You might experience a headache by holding in stress, or you might feel less connected with others if you don’t share your needs.

Furthermore, “emotional restraint with suffering can then also translate into emotional restraint with joy and happiness,” says Jennifer Henry, director of the Counseling Center at Maryville University, because being able to cry is a way to acknowledge your feelings.

But Bylsma adds that it’s important to understand that there are significant differences in people’s tendencies to cry. You “might not have the urge to cry, and that’s not necessarily unhealthy,” she says. Nor is it necessarily harmful to suppress crying when it might have unwelcome consequences, such as “if you’re crying at work and it impacts your work performance or it’s an inappropriate situation.”

How and when crying is most beneficial

There’s a lot of variability in how you might experience benefits from crying, Bylsma says, but one key factor is social context: You’re more likely to experience benefits if you cry around supportive individuals.

“Crying and opening up really is a social cue to show vulnerability and to show that something’s not right in a way that can’t be expressed with words,” Khurana says. Crying tells others and ourselves that we might need help or that we might be overwhelmed — feelings that are all too common during this pandemic.

The amount of social connection and support fostered through crying varies by culture and who you cry around, Henry says. For example, crying in front of your best friend might evoke more comfort than crying around a co-worker. But the “social bonding, the eliciting support and connection” of crying is powerful, Henry says.

Whether you cry with someone else or by yourself, shedding tears can also help you “confront the things that are bothering you and face them and emotionally process them,” Bylsma says. “You might reach a new cognitive understanding . . . by spending that time focusing on it, because crying is something that’s very attention-getting for the individual and for others around you.”

>In this way, crying can act as a signal “to stop and take care of ourselves and to address that emotion” by dealing with underlying issues or stressors, says Roseann Capanna-Hodge, a Connecticut-based psychologist and integrative mental health expert.

Beyond receiving support from others and gaining a deeper understanding of what may be troubling you, crying is also a form of expression. “Emotional expression is healthy in general and something that we want to encourage to help people cope with the feelings they’re dealing with,” Bylsma says.

Should you make yourself cry?

Because crying can elicit some social and emotional benefits, is it healthy to make yourself cry? It’s not a one-size-fits-all solution, Bylsma says.

“It depends on how you’re making yourself cry and what your purpose is in doing it,” Henry adds. “If you feel like there’s unresolved sadness or something that you really, really need to get out,” she says, there could be some value in “trying to tap into the emotion that might create the crying.”

But Bylsma says you shouldn’t be concerned if you can’t cry, especially now. Some people may experience a “traumatic chronic stress reaction, where they might be feeling numbness” and have trouble being in touch with their emotions because of everything going on, she says.

Rather than forcing yourself to cry out of the blue, each of the experts recommends allowing yourself to cry — and even eliciting a crying session — if you feel stress or emotion building up. “If a person feels the urge to cry, and feels they need to get out their emotions, they should do it in whatever context will be most helpful, whether it be alone or with someone else or on a Zoom call,” Bylsma says.

“The first reaction people have most of the time when we feel the tears starting to come is we try to stop it,” Capanna-Hodge says. “Stop trying to put the brakes on it. Let it happen, and give it the time that it needs.”

Allowing for a good cry

To set up for a healthy cry, find a safe, comfortable place for yourself or with someone whom you trust; Bylsma recommends seeking out whomever you generally feel close to and share other kinds of emotional reactions with.

You can elicit crying by listening to a song that triggers emotion, watching a sad movie, talking with your therapist or simply telling a friend you need to cry. Pay attention to your thoughts, feelings and sensations. When you prompt a good cry, “your subconscious allows you to release things that may have held you back,” Capanna-Hodge says.

Crying can look different for everyone. Your cry might consist of a few tears or a half-hour of sobbing. Your crying will also depend on what you’re experiencing, whether it’s a job loss or a stressful week working on the front lines. But if you’re crying consistently over a few weeks or don’t know why you’re crying, it may be a sign to find a therapist who can help you determine what’s going on and provide support, Henry says.

You also can offer a comfortable, supportive space for your family and friends to cry. You don’t need to have a solution; it’s just important to be there with them. Doing so, Khurana says, often allows “the blossoming of love and just caring in a way that wasn’t there before.”

Complete Article HERE!

What we’ve learned about bereavement during the pandemic

By and

The coronavirus pandemic has been extremely distressing for those who are bereaved and grieving, regardless of whether COVID-19 was the actual cause of death of their loved one. We know anecdotally and from emerging research that people who have lost someone during the pandemic were less likely to have visited them before they died or able to attend the funeral.

Our Bereavement Diaries project, which gathered pandemic diaries of people supporting the bereaved in assisted living and retirement villages, or who trained as Cruse bereavement volunteers, adds nuance to this narrative. The 43 diary entries we received between May and September 2020 offer some important, real-time insights into how grief and bereavement have been experienced during the pandemic, and the everyday ways in which people have given and continue to give one another support.

Personal testimony

In the early days of the pandemic, there seemed to be a familiar demographic pattern in terms of deaths, but as we now know, increasingly younger people are dying too.

One of our diarists told us about her friend Eunice, whose grandson was gravely ill in hospital with COVID-19. Lockdown restrictions meant that she wasn’t able to see his mother (her daughter), which was so distressing for her that she became ill and staff had to call an ambulance. In a later entry, our diarist tells us that while Eunice did not end up in hospital, her grandson died, saying:

I did go round and see her. I didn’t break the rules. She was in the bedroom and I was in the passage just talking to her. I spent quite a few hours with her, because she was absolutely down, absolutely, absolutely devastated.

This diarist continues to give Eunice neighbourly love, support and comfort. We have learned that this sort of compassionate listening and support have been vital for many during lockdown, often involving telephone calls to support those who are lonely or grieving.

As another participant in the project put it:

We don’t have the answers, but we can stand or sit alongside others … The fallout [from COVID-19] is immense throughout the village … Being able to talk things through and share stories with others has been helpful.

Diarists also told us that, when there was no opportunity to collectively grieve and acknowledge someone’s death, then the grieving process was put “on hold”. Lockdown measures have greatly restricted funeral gatherings and the chance to remember loved ones who have died.

We heard from one diarist that people were responding to this by organising alternative memorial events, perhaps taking more active control over their collective grieving than they normally would:

We had a funeral on Wednesday … That girl not only lost not only her mum, she lost her father and she lost her grandfather. So Mavis and Heather printed out some songs … The staff came out to stand outside and I told some of the residents, ringing round saying to quite a few people that if they wanted to go down or stand on their balconies. They had a prayer and some songs and they talked about her for about 15 minutes and then the hearse came round and stopped a bit. It was very very moving and personal.

Different kinds of loss

We heard a great deal from our Cruse volunteer diarists about how people had very mixed feelings about bereavement during lockdown. For some, the absence of normal grieving rituals has been very challenging, taking away what one diarist described as vital “restoration after loss activities”.

For others though, we heard how the curtailment of normal social activities and not being at work enabled people to grieve according to their own schedule and rhythm, without the pressure to appear happy when they didn’t feel like that inside. We also heard how not being confronted with things like Mother’s Day and Father’s Day celebrations was a welcome relief for some who find such celebrations simply amplify the sense of loss.

Finally, our diarists told us that there was a lot of grieving going on with residents, not necessarily about a recent death, but rather over other losses:

Grieving about not seeing family, not seeing friends. Grieving for the losses that aren’t about death. All those little things make a lot of difference.

The impact of COVID-19 on assisted living residents was made clear in a collective feeling of uncertainty, losing confidence and missing opportunities that, for some, may never come again.

Diarists’ accounts echo the emerging consensus that there are additional layers of complexity to the experiences of loss, grief and bereavement during this pandemic. But they also bring into question how we memorialise death in so-called normal times. Some bereaved people have reported experiencing solace in the way neighbours have pitched in with alternative memorials that don’t involve a great deal of expense but bring people together as a compassionate community.

These accounts have also demonstrated the value of listening and neighbourliness, and the role of volunteers in supporting those who are bereaved without requiring expensive talking therapies or clinical support.

Importantly, they have highlighted how having the opportunity to get off life’s “normal” social merry-go-round is actually helpful and welcomed by some of those grieving right now. They also serve as a reminder that the pandemic involves a great deal of other kinds of losses that still need to be mourned.

Complete Article HERE!

Microsoft patent shows plans to revive dead loved ones as chatbots

The patent also mentions using 2D or 3D models of specific people

By Adam Smith

Microsoft has been granted a patent that would allow the company to make a chatbot using the personal information of deceased people.  

The patent describes creating a bot based on the “images, voice data, social media posts, electronic messages”, and more personal information.

“The specific person [who the chat bot represents] may correspond to a past or present entity (or a version thereof), such as a friend, a relative, an acquaintance, a celebrity, a fictional character, a historical figure, a random entity etc”, it goes on to say.

“The specific person may also correspond to oneself (e.g., the user creating/training the chat bot,” Microsoft also describes – implying that living users could train a digital replacement in the event of their death.

Microsoft has even included the notion of 2D or 3D models of specific people being generated via images and depth information, or video data.

The idea that you would be able, in the future, to speak to a simulation of someone who has passed on is not new. It is famously the plot of the Black Mirror episode “Be Right Back”, where a young woman uses a service to scrape data from her deceased partner to create a chatbot – and eventually a robot.

In October 2020, Kanye West bought Kim Kardashian West a hologram of her late father, Robert Kardashian, to celebrate her 40th birthday, further cementing the idea of digital representations of the dead that can more authentically communicate with the living.

The hologram spoke for around three minutes, directly addressing Kardashian and her decision to become a lawyer “and carry on my legacy”.

Apart from Microsoft, other tech companies have tried to use digital data to recreate loved ones who have passed on.

“Yes, it has all of Roman’s phrases, correspondences. But for now, it’s hard — how to say it — it’s hard to read a response from a program. Sometimes it answers incorrectly”, Mazurenko’s father said.

Complete Article HERE!

9 Tips for Grieving the Loss of a Pet During the Pandemic

By Erin Bunch

Two weeks ago, my cat unexpectedly passed away. Over the years, she’d become a real-deal dear friend, and in the midst of being isolated during the pandemic, my connection to her only grew stronger. Perhaps that’s part of why I’ve taken it harder than I ever imagined I would; grieving the loss of a pet under these circumstances feels not dissimilar to how I’ve felt after losing humans in the past. But despite commonalities in emotional experience, there are no rituals in place for how to proceed when it’s a pet you’re grieving, and that’s left me feeling lost.

According to Jillian Blueford, PhD, a Denver-based therapist who specializes in grief, what I’m feeling is extremely common. For starters, she assures me that it’s natural to feel pain when a pet dies. “Grief comes down to the loss of someone or something that was significant to us, where there was some attachment to it, and so it makes a lot of sense that the death of a pet can invoke a similar grief response [to the death of a person],” she says. “A lot of us consider our pets part of our family, so it can be impactful when they pass.”

And since pets tend to provide their owners with unconditional comfort and emotional support, their passing can leave a significant hole in our lives. Add this factor to the reality that many are spending more time at home with their pets than ever before due to COVID-19 safety measures, and the exacerbated sense of loss for those whose pets have died during the pandemic is much clearer.

While the only way out of grief may indeed be through it, Dr. Blueford has several suggestions to offer those grieving the loss of a pet during the pandemic who may feel even more alone and isolated as a result.

Below, a grief specialist offers 9 ideas for grieving the loss of a pet during the pandemic.

1. Create a ritual

While there are no standard rituals in place to mark the passing of a pet, burials are still common, says Dr. Blueford. And even if your pet’s body isn’t actually interred in your backyard, you can still hold a funeral ceremony or wake for them wherever makes sense for you.

2. Collect mementos

Some may find it therapeutic to collecting photos, toys, or other things that remind them of the good times they experienced with their pet. For example, I bought an iPhone Polaroid printer so I could print photos of my cat, which are now taped to my computer and fridge (the two places I gaze upon the most, LOL).

3. Get rid of reminders if they trigger sadness

On the flip side, Dr. Blueford notes that some people may find donating their pet’s things to be more healing because doing so gets those items out of sight (and potentially aids in the happiness of another pet). “There’s no timeline for getting rid of that stuff,” she adds. “It’s just about doing what feels right for you.”

4. Sharing stories

Dr. Blueford recommends sharing pictures and stories with others, just as you would do if you were grieving the death of a beloved person. If this makes you feel weird—as it does me—she says to consider why and work to get through those feelings. “Oftentimes we feel like we would be a burden on people for sharing our grief and memories of our pet, but oftentimes people do want to listen,” she says. “It’s just about finding the right person to share with, especially when an anniversary or special date comes up where you know your grief will be more challenging. You can say, ‘I know I’ve already talked to you about my pet, but they’re really on my mind today’.”

You can, of course, share on social media, too. “If you’re active and comfortable, that can be the audience you’re sharing to,” Dr. Blueford says.

5. Write to your pet

You can also journal letters to your pet, Dr. Blueford suggests. “It may feel odd, but we communicate with our pets all the time, and they communicate with us,” she says. “So just like we might do with someone who has died, we can write to our pets to tell them how much we miss them, and about the things that are going on that they’d normally be a part of.”

6. Consider adopting a pet

Dr. Blueford says her clients often struggle with the choice of whether or not to get a new pet—and if so, when. But, she assures, there’s no right or wrong way to go about this. “If you do decide you don’t want a pet ever again, that’s okay,” she says. “And if you decide you’re missing that companionship and would like another pet, that’s okay, too.”

If you choose the latter, she does make clear that the new pet won’t erase the grief you feel for the pet you’ve lost. “We don’t like to be in that pain, so it’s easy after the death of a pet to say, ‘I’ll go get another pet and this will help me avoid the loneliness and grief I’m feeling right now’,” she says. “But that’s not always the case. Even if you do decide to get another pet, the grief will be there, so sometimes it’s best for you to experience a little bit of time before deciding if you want to bring another pet into the home.”

7. Feel your grief

“I will always promote feeling the grief and whatever ugliness and joy comes out of it,” Dr. Blueford says. “As much as we try to push down any type of grief, it will eventually resurface to the point where we can’t avoid it.”

So in addition to memorializing and honoring your pet, try not to fix your feelings. “Honor the grieving and whatever feelings or thoughts come up—pain, anger, confusion, guilt, or even reminiscing on more joyous memories and laughing,” she says. “And hopefully the next time [the grief surfaces] will be more manageable.”

It’s important to note, she says, that like with all forms of grief, grieving the loss of a pet can be an unpredictable process, especially in the beginning. “That early, more acute grief can feel exhausting and like a roller coaster—maybe one minute you’re okay and the next minute you’re not, and you can’t predict when grief is going to hit you,” she says. This unpredictability is the part we dislike most, Dr. Blueford says, which is why many might try to suppress it. Doing so only likely postpones grief, however, so you may as well let yourself feel it when it first arises.

8. Look for support groups

Support groups for those who are grieving may be particularly helpful because they allow you to connect with others in similar situations. There are hotlines dedicated to pet grief, too.

9. Allow yourself to feel joy

When I tell Dr. Blueford that I’m experiencing guilt related to my pet loss amid moments when I feel joy, she assures me this is also a common feature of grief. “We have to give ourselves permission to have good days and know that that doesn’t mean we’ll forget our pet or the loss,” she says. “Grief is a unique aspect of our life because it doesn’t go away fully, and we have to learn how to integrate it into the new normal, knowing that means both good and bad days.”

Complete Article HERE!

Race, Socioeconomics Are Largest Barriers to Hospice and Palliative Care

By Holly Vossel

Race, ethnicity and socioeconomic status are the leading differentiating factors fueling disparities in hospice utilization. Recent research reflects mounting concerns about inequitable access to hospice and palliative care across the United States.

Researchers from the John Hopkins University School of Nursing in Baltimore examined March 2020 data from three national health care databases that outlined disparities in hospice and palliative care. Of the studies the researchers assessed across the PubMed, Embase and CINAHL EBSCO databases, 70% described differences in access outcomes to hospice and palliative care by ethnicity, race or socioeconomic status.

According to authors of a 2021 American Journal of Hospice and Palliative Medicine research article, “there is growing evidence of disparities in access to hospice and palliative care services to varying degrees by sociodemographic groups.”

Studies have shown that demographic disparities can limit the scale of hospice. Roughly 82% of Medicare decedents in 2018 were Caucasian, according to the National Hospice & Palliative Care Organization (NHPCO). Comparatively, slightly more than 8% were African-American; 6.7% were Hispanic, and 1.8% were Asian. That year, only 0.4% of Medicare decedents were Native American.

Hospice providers have increasingly strategized to improve access to end-of-life care among these historically underserved populations, seeking to bridge racial divides to hospice and palliative care. Addressing demographic disparities in hospice utilization can ensure more patients receive quality care at the end-of-life, as well as open untapped markets to hospice providers.

According to the study authors, a main objective was to highlight the range of sociodemographic groups affected by inequitable hospice and palliative care access. The research examined disparities across five domains of access, with 60% of studies emphasizing acceptability, affordability and appropriateness as primary barrier points. Other domains included approachability and availability of these services.

Other data included in the body of research found disparate access based on variables such as age, gender and geographic location, such as remote rural areas.

An objective of the study was to outline implications for future research, policy and clinical practices that would improve access for underserved communities.

Underlying factors contributing to disparity issues have received little systematic attention, according to the authors, who indicated that public policy initiatives will be needed to bridge these divides..

“This integrative review highlights the need to consider various stakeholder perspectives and attitudes at the individual, provider, and system levels going forward,” said the study’s authors. “[And] to target and address access issues spanning all domains.”

Complete Article HERE!

Cancer, Religion and a ‘Good’ Death

It is hard to know how much my patient, caught in an eternal childhood, understood about his cancer.

By Mikkael A. Sekeres, M.D.

When I first met my patient, three years ago, he was about my age chronologically, but caught in an eternal childhood intellectually.

It may have been something he was born with, or an injury at birth that deprived his brain of oxygen for too long — I could never find out. But the man staring at me from the hospital bed would have been an apt playmate for my young son back home.

“How are you doing today, sir?” he asked as soon as I walked into his room. He was in his hospital gown, had thick glasses, and wore a necklace with a silver pendant around his neck. So polite. His mother, who sat by his bedside in a chair and had cared for him for almost half a century, had raised him alone, and raised him right.

We had just confirmed he had cancer and needed to start treatment urgently. I tried to assess what he understood about his diagnosis.

“Do you know why you’re here?” I asked him.

He smiled broadly, looking around the room. “Because I’m sick,” he answered. Of course. People go to hospitals when they’re ill.

I smiled back at him. “That’s absolutely right. Do you have any idea what sickness you have?”

Uncertainty descended over his face and he glanced quickly over to his mother.

“We were told he has leukemia,” she said. She held a pen that was poised over a lined notebook on which she had already written the word leukemia at the top of the page; I would see that notebook fill with questions and answers over the subsequent times they would visit the clinic. “What exactly is that?” she asked.

I described how leukemia arose and commandeered the factory of the bone marrow that makes the blood’s components for its own sinister purposes, devastating the blood counts, and how we would try to rein it in with chemotherapy.

“The chemotherapy kills the bad cells, but also unfortunately the good cells in the bone marrow, too, so we’ll need to support you through the treatment with red blood cell and platelet transfusions,” I told them both. I wasn’t sure how much of our conversation my patient grasped, but he recognized that his mother and I were having a serious conversation about his health and stayed respectfully quiet, even when I asked him if he had questions.

His mother shook her head. “That won’t work. We’re Jehovah’s Witnesses and can’t accept blood.”

As I’ve written about previously, members of this religious group believe it is wrong to receive the blood of another human being, and that doing so violates God’s law, even if it is potentially lifesaving. We compromised on a lower-dose treatment that was less likely to necessitate supportive transfusions, but also less likely than standard chemotherapy to be effective.

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“Is that OK with you?” my patient’s mother asked him. I liked how she included him in the decision-making, regardless of what he could comprehend.

“Sounds good to me!” He gave us both a wide smile.

We started the weeklong lower-dose treatment. And as luck would have it, or science, or perhaps it was divine intervention, the therapy worked, his blood counts normalized, and the leukemia evaporated.

I saw him monthly in my outpatient clinic as we continued his therapy, one week out of every month. He delighted in recounting a bus trip he took with his church, or his latest art trouvé from a flea market — necklaces with glass or metal pendants; copper bracelets; the occasional bolo tie.

“I bought three of these for five dollars,” my patient confided to me, proud of the shrewdness of his wheeling and dealing.

And each time I walked into the exam room to see him, he started our conversation by politely asking, “How’s your family doing? They doing OK?”

Over two years passed before the leukemia returned. We tried the only other therapy that might work without leveling his blood counts, this one targeting a genetic abnormality in his leukemia cells. But the leukemia raged back, shrugging off the fancy new drug as his platelets, which we couldn’t replace, continued to drop precipitously:

Half normal.

One-quarter normal.

One-10th normal.

One-20th normal.

He was going to die. I met with my patient and his mother and, to prepare, asked them about what kind of aggressive measures they might want at the end of life. With the backdrop of Covid-19 forcing us all to wear masks, it was hard to interpret their reactions to my questions. It also added to our general sense of helplessness to stop a merciless disease.

Would he want to be placed on a breathing machine?

“What do you think?” his mother asked him. He looked hesitantly at me and at her.

“That would be OK,” he answered.

What about chest compressions for a cardiac arrest?

Again his mother deferred to him. He shrugged his shoulders, unsure.

I turned to my patient’s mother, trying to engage her to help with these decisions. “I worry that he may not realize what stage the cancer has reached, and want to avoid his being treated aggressively as he gets sicker,” I began. “Maybe we could even keep him out of the hospital entirely and allow him to stay home, when there’s little chance …” My voice trailed off.

Her eyes above her mask locked with mine and turned serious. “We’re aware. But we’re not going to deprive him of hope at the end …” This time her voice trailed off, and she swallowed hard.

I nodded and turned back to my patient. “How do you think things are going with your leukemia?”

His mask crinkled as he smiled underneath it. “I think they’re going good!”

A few days later, my patient developed a headache, along with nausea and dizziness. His mother called 911 and he was rushed to the hospital, where he was found to have an intracranial hemorrhage, a result of the low platelets. He slipped into a coma and was placed on a ventilator, and died soon afterward, alone because of the limitations on visitors to the hospital during the pandemic.

At the end, he didn’t suffer much. And as a parent, I can’t say for certain that I would have the strength to care for a dying child at home.

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