Why Are So Many Americans Dying?

By David Wallace-Wells

Since it was first introduced by the economists Anne Case and Angus Deaton in 2015, the phrase “deaths of despair” has become a sort of spiritual skeleton key that promised to unlock the whole tragic story of a new American underclass.

Beginning around the turn of the millennium, Case and Deaton showed, deaths from suicide, opioid overdose and alcohol-related liver disease among less educated, white, middle-aged people began to grow in a pattern that seemed to demonstrate how the country’s white working class was being — or at least feeling — left behind. Last month, the economists presented their updated data with a new paper showing a growing divergence in life expectancy between those with college degrees and those without.

But over the past few years, the “deaths of despair” story has come to seem thinner to many of those reading the literature most closely. And in response to the new findings, pointed critiques were published by Dylan Matthews in Vox and by Matthew Yglesias in Slow Boring, arguing that the deaths of despair narrative had been overhyped, creating a just-so story about postindustrial decline that had seemed too good to scrutinize.

Eight years on, the central claim from Case and Deaton holds up relatively well: Deaths by suicide, overdose and liver disease have been on the rise among the white working class and the middle class. But so have gun deaths across the country, deaths among the young and suicides, which puts the data on white middle-aged men and women in a different light. Among other questions about that data, it turns out that deaths of despair increased pretty uniformly across all demographic groups and that the rise in such deaths among white middle-aged people was, while real and concerning, not all that exceptional.

What does that imply, though? In their critiques, both Yglesias and Matthews argue that the data tells a narrower story than Case and Deaton do — and that rather than invoking national malaise we should focus on the role of opioids among the country’s worst off in the first case, or high school dropouts and heart disease in the second.

But it seems to me that the opposite is true: The American mortality crisis is much larger than deaths of despair, in fact too broad and diffuse to be stuffed into one demographic box or characterized as a failure of one policy area. You can see it almost anywhere you care to look and any way you slice the data.

Unless they’re in the top 1 percent, Americans are dying at higher rates than their British counterparts, and if you’re part of the bottom half of income earners, simply being American can cut as much as five years off your life expectancy. At every age below 80, Americans are dying more often than people in their peer nations: Infant mortality is up to three times as high as it is in comparison countries; one in 25 kindergartners can’t expect to see 40, a rate nearly four times as high as in other countries; and Americans between 15 and 24 are twice as likely to die as those in France, Germany, Japan and other wealthy nations. For every ethnic group but Asian Americans, prepandemic mortality rates in the United States were higher than those of economic peer countries: In 2019, Black Americans were 3.8 times as likely to die as the residents of other wealthy countries, white Americans were 2.5 times as likely to die, and Hispanic Americans 1.8 times as likely to die. Americans with college degrees do substantially better than those without, but that second group represents almost two-thirds of the country. And while mortality rates show a clear geographic divergence, with life expectancy gaps as large as 20 years between the country’s richest and poorest places, just a fraction of American counties even reach the European Union average.

When looking at American trend lines alone, anomalies like overdose spikes or mortality increases among high-school dropouts can jump out, and the divergence between, say, those with bachelor’s degrees and those without is quite striking. But in comparing the overall health of Americans to those in other wealthy countries, almost everyone looks to be suffering, and even those remarkable anomalies turn out to be quite small, contributing only somewhat trivially to the widening gap between how many Americans are dying each year and how many of our peers elsewhere are.

Overdose deaths involving synthetic opioids, for instance, have grown from less than 10,000 in 2015 to 70,000 in 2021. Add heroin and other overdoses and the total grows to more than 100,000 — a public health horror story, and a much graver problem than in any of our peer countries. But that barely explains a fraction of the exceptional American mortality pattern identified by the researchers Jacob Bor and Andrew Stokes, who found that a million more Americans died each year than would have if the country’s overall mortality rates matched those of peer countries in Europe.

Those million extra deaths exceed even the nearly 700,000 who die each year from cardiovascular disease, the country’s biggest killer. But of course many residents of other rich countries die from it, too. And though, as Matthews emphasizes, American progress against heart disease has stalled in recent years, the gap between our cardiovascular mortality and those of our peers turns out to be relatively small, accounting for just another fraction of Bor and Stokes’s “missing Americans.” Which tells you something about how large that number of extra deaths really is: If American mortality rates simply matched those of peers overall, the country’s total number of deaths would have fallen 22 percent on the eve of the pandemic in 2019. In 2021, the researchers found, extra mortality accounted for nearly one in every three American deaths.

“The United States is failing at a fundamental mission — keeping people alive,” The Washington Post recently concluded, in a remarkable series on the country’s mortality crisis. “This erosion in life spans is deeper and broader than widely recognized, afflicting a far-reaching swath of the United States.” In a quarter of American counties, The Post found, death rates among working-age adults are not just failing to improve but are also higher than they were 40 years ago. “The trail of death is so prevalent that a person could go from Virginia to Louisiana, and then up to Kansas, by traveling entirely within counties where death rates are higher than they were when Jimmy Carter was president.” If death rates just among the country’s 55-to-69-year-olds improved to match the rates of peer countries, The Post calculated, 200,000 fewer of them would have died in 2019. That is more than the number of them who died of Covid in 2020.

There are a few things that Americans do as well or better than other countries (cancer treatment, where outcomes have been steadily improving now for decades, and keeping old people alive), so chances that a 75-year-old makes it to 90 or 100 are about the same as in other wealthy countries — though that stat is somewhat distorted by the fact that many fewer Americans make it to 60 in the first place, with those who do likelier in better health.

But by almost every other measure the United States is lagging its peers, often catastrophically. The rate of homicides involving a firearm are 22 times higher in the United States as in the European Union, for instance, a worsening trend that has given rise to research suggesting that the country’s mortality crisis is primarily about gun violence. Another set of researchers emphasize exceptional mortality rates among the young, with rates of death among American children growing more than 15 percent between just 2019 and 2021, with little of that increase attributable to Covid. Americans also die much more often in car crashes, workplace accidents and fires. Our maternal mortality rate is more than three times as high as that of other wealthy countries, and our newborns have the highest infant mortality rate in the rich world. We are almost twice as likely to suffer from obesity as are our counterparts in countries of the Organization for Economic Cooperation and Development, and the downstream consequences — from hypertension to heart disease and stroke — mean that obesity could explain more than 40 percent of the U.S. life expectancy shortfall for women, and over 60 percent for men. The life expectancy among America’s poorest men may be 20 years shorter than that of their counterparts in the Netherlands and Sweden. Overall, among 18 high-income countries, America’s life expectancy ranks dead last.

It’s not quite right to call all this simply “despair,” even if social anomie plays a role. Doing so places too much weight on the suffering of individuals and not enough on what epidemiologists call the social and environmental determinants of health: community support, education and, perhaps most important, health care access. (Since 2015, Case and Deaton have acknowledged these factors; their 2020 book on the subject emphasizes health care inequalities, and Deaton’s new book “Economics in America” focuses squarely on inequality.)

But the bigger problem seems to me to be that talking narrowly about despair localizes the American mortality dysfunction in a small demographic, when almost the entire country is dying at alarming rates. The burden does not fall equally, and the disparities matter. But looking globally, our mortality crisis appears, effectively, national.

Complete Article HERE!

Does Thinking About Dying Increase Your Risk Of Death?

By Tricia Goss

The human mind and body are intricately connected. The relationship between the two is so profound that it can significantly impact our well-being. Whether thinking about death increases the risk of death delves deep into this complex relationship. The age-old saying “mind over matter” suggests that our thoughts have the power to shape our physical reality, and scientific research supports this notion.

Psychoneuroimmunology studies how emotions, thoughts, and beliefs affect the immune and nervous systems (via Reference Module in Neuroscience and Biobehavioral Psychology 2017). A 2017 study in Physiological Reviews shows that the brain communicates directly with the immune system, releasing chemicals and hormones that can profoundly impact how your body functions. Stress hormones like cortisol, released when we experience psychological stress, can lead to health problems like cardiovascular issues and weakened immune responses (per the Mayo Clinic).

The placebo and nocebo effects illustrate this even further. Believing that a treatment will work can trigger remarkable healing responses, while negative expectations can have detrimental consequences.
Ultimately, it’s clear that our thoughts and physical well-being are intricately connected. By exploring the science behind psychosomatic illnesses and how the fear of death influences health, we can better understand how our thoughts shape our bodies’ realities.

Psychosomatic illnesses and their impact

woman touching bridge of nose

Psychosomatic illnesses are physical conditions stemming from psychological factors like stress, anxiety, or emotional distress. Studies have consistently shown how psychological distress can trigger or worsen various physical health issues (per Healthline). For instance, 2014 research published in the World Journal of Gastroenterology highlighted that patients with IBS often exhibit high levels of anxiety and stress, which can worsen their symptoms.

Additionally, psychosomatic illnesses can affect our hearts. According to 2021 research published in Circulation, negative psychological factors — such as stress, anxiety, and depression — can increase our risk of developing cardiovascular disease (CVD). In contrast, positive psychological factors — such as optimism, resilience, and social support — can reduce our risk of developing the disease.

Similarly, psychological factors also play a significant role in chronic pain conditions. For example, a 2017 report in Neural Plasticity demonstrated a link between depression and chronic pain.

These examples provide compelling evidence of the profound connection between the mind and body.

The positive aspects of mortality awareness

happy mother, daughter, and granddaughter

The idea of mortality is a complicated issue that encourages us to explore the depths of our human experience. Realizing that your time on this planet is limited can bring about many emotions, such as fear, anxiety, and despair. However, this realization can also provide you with an opportunity for personal growth and positive change. It urges you to reflect on your life, evaluate your priorities, and cherish every moment.

Embracing life’s impermanence can be a powerful catalyst for personal growth as well as developing and changing habits. It can help motivate you to live a more authentic, meaningful, and purposeful life. By accepting that life is fleeting, you can be inspired to wake up each day with a sense of purpose and gratitude for the world around you. By facing your fears with resilience and courage, you’ll learn to appreciate life’s uncertainties and make the most of the time you have.

What to do if thinking about dying causes anxiety

man speaking with mental health professional

While it’s important to recognize that death is a natural part of life, it’s also vital to avoid fixating on it and letting it cause undue stress or anxiety. The good news is that there are plenty of constructive steps we can take to address our concerns and maintain a positive outlook on life. A study published in 2022 in Current Psychology has shown that people who find meaning in their lives and can effectively manage stress are less likely to experience death anxiety. This means growing and cultivating resilience in the face of existential fears is possible.

If you worry about death frequently or feel like these fears are starting to impact your daily life, seeking mental health support is a great way to be proactive and get the help you need. Mental health therapists and psychologists can offer guidance, coping strategies, and emotional support to help you navigate your fears and feel more resilient. By embracing the challenges of mortality and seeking support when needed, you can lead a more balanced, fulfilling life and face life’s uncertainties with greater confidence.

Complete Article HERE!

How Hospices Can Improve Health Equity for Rural-Based LGBTQ+ Seniors

By Holly Vossel

Aging LGBTQ+ populations have few options for quality end-of-life care – particularly those in rural areas – and hospices are ramping up efforts to reach them.

Access to hospice can be challenging for many seniors in remote or rural regions. Terminally ill seniors in these locales often experience higher levels of loneliness and isolation at the end-of-life due to a lack of nearby hospices or support from family caregivers.

This isolation can be compounded for LGBTQ+ seniors with terminal and serious illnesses, according to Dr. Jennifer Ritzau, vice president of medical staff services at HopeHealth, a Rhode Island-based hospice, palliative and home care provider. She also serves as medical director of palliative care at the nonprofit organization.

“I think one of the things that feels like the tip of the iceberg for my team is loneliness and hopelessness,” Ritzau told Hospice News during the Palliative Care Executive Webinar Series. “I think increasingly in our world, sadly, many rural people are alone. I think especially LGBTQ+ elders end up alone. There are lots of places where we see that words and actions fail in being loving and supportive in that part of their life.”

LGBTQ+ communities have historically faced discrimination across the care continuum, leading to fear and mistrust that complicate their ability to access hospice and palliative care professionals, Ritzau indicated. These issues can be even more challenging for LGBTQ+ seniors than other social determinants of health such as socio-economic status, she said.

“There are resources for some other [social determinants], but when someone really has nobody that is a harder one to solve sometimes. You and your team can’t be there for them 24/7,” Ritzau said. “It is really hard [for clinicians] to walk out of that house, close the door and know that nobody’s coming back until you do later.”

The dangers of isolation

Roughly 3 million LGBTQ+ adults live in rural areas across the United States, representing nearly 20% of the nation’s overall population of this community, according to a study from the Movement Advancement Project.

Though more hospices are trying to improve access to end-of-life care among underserved communities, more work is needed to ensure LGBTQ+ seniors have quality experiences, according to Dr. Michael Barnett, hospice and palliative physician at Four Seasons. The North Carolina-based organization provides adult and pediatric hospice and palliative care across three counties in western regions of the state.

Hospices stand to improve upon their recognition and understanding of what the LGBTQ+ rural community looks like and what challenges they often have as they age, Barnett indicated.

In addition to having smaller social circles of family and friend caretakers, LGBTQ+ individuals in rural areas can also have fewer hospice providers available in their geographic regions, he said. These isolation issues are layered by the practical challenges of rural living that can create barriers to end-of-life care such as spotty internet and phone connectivity, Barnett stated.

“As seriously ill LGBTQ+ adults get sicker, they’re increasingly isolated from an outside world that gets much smaller as they’re able to do less,” Barnett told Hospice News. “And that’s even harder for rural areas where patients can sometimes have little to no cellphone coverage or internet access. They’re disconnected socially, physically and distanced from medical support structures.”

As seriously ill LGBTQ+ adults get sicker, they’re increasingly isolated from an outside world that gets much smaller as they’re able to do less. And that’s even harder for rural areas where patients can sometimes have little to no cellphone coverage or internet access. They’re disconnected socially, physically and distanced from medical support structures.
– Dr. Michael Barnett, hospice and palliative physician, Four Seasons

Though telehealth can be a window into the worlds of rural-based hospice patients, it can also represent a barrier for LGBTQ+ individuals who may lack connectivity, as well as the trust to confide in health professionals, Barnett added.

“We’ve come to rely on technology for support, but that’s a real issue for LGBTQ+ seniors who are already experiencing technical challenges, let alone trust factors and isolation,” he said. “It’s looking at the real issues of this broader community in a whole different context.”

Gender-affirming hospice care hard to find

Not only are hospices in rural regions often stretched thin in terms of available clinical resources, they can also face regulatory challenges around providing gender-affirming training for staff. Evolving state laws represent a key challenge in striving toward more gender-affirming hospice care.

Some states have recently passed legislation banning the delivery of gender-affirming care including Idaho, Indiana, Mississippi and Tennessee, among others

About 574 bills have been introduced thus far in 2023 across 49 states nationwide that include legislation related to transgender rights, according to the Trans Legislation Tracker. Around 83 of these laws have passed, 366 are actively in consideration and 125 were blocked, the data showed.

Many of the states with some form of these laws in place have large rural regions with several pockets of seniors, including LGBTQ+ communities that may be less than well-known among providers due to fear of discrimination, according to Barnett.

“It’s still fairly common to hear hospices say, ‘I don’t really have many gay or transgender patients in my community,’” Barnett said. “The truth is, you do, and many of these aging LGBTQ+ adults have never had affirming health care providers. They come from generations where gay activity was criminal or treated as a pathologic mental illness. So to suddenly expect them to be open and create that safe space of respect, quality and a good death is a big challenge, especially in rural regions where they’ve often been mistreated by bias in their own communities.”

Despite regulations within their geographic service regions, hospices must recognize the importance of ensuring that staff at all levels are trained and educated in gender-affirming care, along with the leading reasons behind disparities among LGBTQ+ communities, according to Kimberly Acquaviva, social worker and professor at the University of Virginia’s School of Nursing.

Having interdisciplinary teams that are trained in gender-affirming health care delivery practices is a crucial part of breaking down barriers among underserved LGBTQ+ seniors, Acquaviva said. This type of training is a large responsibility for leaders to instill in their code of ethics and training policies to avoid discriminatory practices, she stated.

“They absolutely have to bring attention to human rights violations,” Acquaviva said during a recent American Academy of Hospice and Palliative Medicine webinar. “Nurses have a right to speak out. Social workers also have an obligation to engage in advocacy [and] should engage in political and social action that seeks to ensure all people have equal access to resources, services and opportunities they require to meet their basic human needs. Chaplains [and] spiritual care professionals are accountable to the public faith community, employers and professionals [and] must promote justice in relationship with others in their institutions and in society.”

How to improve

Hospices seeking to address this issue need to provide employee training that has “hard empathy pieces” woven throughout, according to Barnett.

Important training elements include teaching staff about the intersectionality of community structures and social determinants that add to layers of stress, discrimination and health inequities around sexuality, gender and class, he said. This allows staff to see how these factors “stack on top of one another” in the dying process for LGBTQ+ seniors, Barnett stated.

Hospices can also instill clear nondiscrimination policies and ensure staff understand how these apply to their roles, he said. Having a staff that includes representatives of the LGBTQ+ community can also improve reach among this group through trust building and understanding, Barnett stated.

“It’s about being thoughtful of how we train on these practical and discriminatory issues. It’s also being thoughtful about hiring LGBTQ+ staff,” Barnett told Hospice News. “Seeing someone in their care team that represent themselves in some way allows them to have the language and comfort level. These things will go a long way in responding and speaking to the suffering at the end of life.”

Hospices that invest in gender-affirming care delivery improvement stand to gain in terms of improved quality, reach and utilization of their services among LGBTQ+ seniors, according to Ben Marcantonio, COO and interim CEO for the National Hospice and Palliative Care Organization (NHPCO).

Focusing on these and other underserved populations can be part of how hospices shape their strategic growth plans, Marcantio said. Hospices that actively focus on quality measures aimed at reducing health inequities have demonstrated improved outcomes among these communities, he indicated.

“The key areas of focus right now in progressing those measures towards improved goals of serving underserved communities that hospices are doing is reflected in both their strategic plan and direction, the implementation and the execution of those,” Marcantio told Hospice News. “That’s where a lot of this work gets done where there’s evidence that organizations are committed to and carrying out those should be noted. It’s having measurable outcomes demonstrating that there is an increased impact in the community in the percentage of, for example, Latino, African American or LGBTQ+ community members now being served in relation to their presence in the population of that given region or or community.”

Complete Article HERE!

End of life nurse shares what people see when they die

@hospicenursejulie

By Ella Scott

A hospice nurse in America has revealed her experience working in palliative care as well as detailing something many experience in their final months alive.

Los Angeles-based carer, Julie McFadden, took to TikTok last year to explain a common sign of death – ‘Visioning’.

According to End of Life Doula, visioning is when dying people believe they are talking to their deceased loved ones. They can also think that they have come to get them, or that they are in the room with them.

@hospicenursejulie What dead relatives before you die. It’s called visioning, and it’s a normal part of death and dying. #hospicenursejulie #hospice #learnontiktok #visioning #educational ♬ original sound – 💕 Hospice nurse Julie 💕

In a clip posted to social media in October 2022, Julie said: “Here is my most comforting fact about death and dying. The craziest things we see on hospice is that most people will start seeing dead relatives, dead loved ones, dead friends, dead pets before they die.”

Continuing on, the 40-year-old said that her patients don’t just start seeing their loved ones days before they die – it can happen up to a month before their death.

“We have no idea why this happens,” Julie elaborated. “We are not claiming that they really are seeing these people. We have no idea.

“But all I can tell you as a healthcare professional, who has worked in this line of work for a very long time, it happens all the time.”

Julie McFadden regularly shares insights into hospice life with her social media followers. Credit: Instagram/@hospicenursejulie
Julie McFadden regularly shares insights into hospice life with her social media followers. Credit: Instagram/@hospicenursejulie

Julie said that visioning happens so frequently that hospice workers regularly work to ‘educate the family and the patient’ on the topic before it commences. This is so that they are not ‘incredibly alarmed when it starts happening’.

She added: “And usually it’s a good indicator that the person is getting close to death, usually a month or a few weeks before they die. This brings me comfort, I hope it brings you comfort.”

Since posting the video last year, Julie’s sentiments have wracked up over 48,000 likes and 570,000 views.

The one-minute clip has also garnered over 1200 comments, with many finding solace in the carer’s admission.

One platform user wrote: “The last morning my mom was coherent she said she could already see my grandma, who died 42 (sic) years ago. In our culture we believe our dead loved ones come to lead you. We know her mom was there ready to welcome her to the other side.”

A second said: “Yep! My mother in law was telling her sister that their mother was packing a suitcase for her trip and picked out a dress for her to wear.”

“Yep I had a patient tell me his dog was on the end of the bed told me full description and name, told his wife made her smile,” said a third.

A medium headed to the comments section and wrote: “Spirit will tell us in a session they are the ones to grab our family at their time of death so they are not alone during the transition.”

Another social media user said: “My mother would often tell me that she just had a talk with my dad or one of her sisters. Started about a month before she passed and they looked good.”

Complete Article HERE!

Getting What You Want At The End Of Life

— Lessons From A Dying Man

By Peter Ubel

Dr. Randy Curtis was diagnosed with Lou-Gehrig’s disease in 2021 and died last February. Curtis was a renowned critical care physician at the University of Washington in Seattle (UDub!), a scholar so productive that new articles continue to come to press after his death, including a recent study in JAMA that might show a way for most of us to die the way we want to.

Many people die in ways, and even in locations, that go against their preferences. They don’t want to be put on ventilators and, yet, spend their last days in intensive care units tethered to breathing machines. They don’t want cardiopulmonary resuscitation, and, yet, receive full-on “codes” when their hearts stop.

Much of this unwanted care could be avoided if patients (aka: “people”) discussed their treatment preferences with their clinicians. But sadly, physicians frequently fail to hold such goals-of-care discussions with their patients, and even when they do engage in these discussions, a second problem often arises: they don’t know how to communicate with patients about their treatment preferences.

Even before the recent JAMA article, Curtis and colleagues had done important work to overcome these two problems. They developed a Jumpstart Guide, with simple language designed to promote conversations that are more effective. Instead of an awkward start to the conversation (“We should talk about what to do if your heart stops”), the guide would suggest a gentler icebreaker (“I want to know what is important to you so that we provide the best care to fit your goals. Is that okay?”). They even showed in a randomized trial that, when patients and clinicians use the guide, there is a significant increase in goal-of-care conversations.

This is all fine and dandy (to quote most of our grandmothers), but an effective intervention will not do any good unless people use it. Randomized controlled trials are typically designed to show whether a given intervention works when incorporated into clinical care. They are not usually designed to figure out whether clinicians and patients will actually use the intervention.

That is where Curtis’s new study comes in. He and his colleagues programmed the electronic health record to identify patients with serious illness, to prepopulate the computer with the communication guide and to email that guide to the patient’s physician. In other words, they made the intervention automatic. They didn’t wait for physicians to take the initiative: “This patient is really sick; I should recheck their potassium, order that new antibiotic and, oh, yeah, initiate a goal-of-care conversation.” Instead, they alerted physicians to the importance of holding a goals-of-care conversation, for this particular patient, while simultaneously pointing physicians toward the guide, thereby empowering them with a sense that they can effectively carry on this often difficult conversation.

This simple intervention worked. In the absence of the intervention, clinicians documented goals-of-care conversations in 30% of seriously ill patients. That number rose 34.5% among patients whose clinicians got the guide inserted into the EHR. A 4% increase might not seem like much. But think about it this way: in response to a simple, non-intrusive EHR intervention, 1 out of 25 clinicians document these important conversations in seriously ill patients who would otherwise have not done so.

Seriously ill patients deserve medical care that aligns with their goals. In the last months of his life, Dr. Randy Curtis took an important step toward making such alignment automatic.

Complete Article HERE!

Death is inevitable

— Why don’t we talk about it more?

Alua Arthur

Death is hard to talk about. But death doula Alua Arthur says if we want to live presently and die peacefully, we have to radically reshape our relationship with death.

 

About Alua Arthur

As a death doula, Alua Arthur help individuals and families to navigate the emotional, legal and spiritual issues that arise around death. Arthur worked as an attorney prior to entering the field of “death work.” Her organization, Going with Grace, educates fellow death doulas in nonmedical end-of-life care. Her forthcoming book, Briefly Perfectly Human, reframes how we think about dying.

Arthur was recently featured in the National Geographic television series Limitless, in which she helped actor Chris Hemsworth map out his own future death. She has been featured in the Los Angeles Times, Vogue, InStyle and more. She is a former director of the National End-of-Life Doula Alliance.

My Husband Is Dying

— Advice from the Cancer Wars

Lou and Leida’s wedding day, 1982

The emotional and physical toll on both of us during our last year together

By Leida Snow

Everybody has a sell-by date, but some folks know theirs in advance. About a year ago, my husband and I had a meeting with a doctor who was new to us. Nice looking man with an open face. He saw our expectant looks and stopped mid-sentence. Looking at Lou he said, “Has no one mentioned that you have stage 4 cancer?”

No one had. We knew there was an issue. Lou has one kidney from birth, and at his yearly checkup, the kidney specialist said to talk to a cancer doctor. But he didn’t seem overly anxious.

I was grateful that finally someone was speaking truth. The hardest to hear was that Lou had, probably, about a year to live. It was as though someone had taken a very sharp knife and plunged it into my stomach.

The oncologist explained that Lou had cancer cells in his liver, but they were not those expected to be there. They were squamish cells, usually associated with other locations. That meant they had spread (metastasized) from somewhere else. But they didn’t know where they had come from.

A Rare Form of Cancer

Lou has cancer with unknown primary (CUP). It affects 2% to 5% of diagnosed cancers. The doctor’s next words tore at my gut: Because the primary source is unknown, there are no data-based, targeted treatments. In other words, for those with CUP, treatment is a guessing game.

I was grateful that finally someone was speaking truth. The hardest to hear was that Lou had, probably, about a year to live.

We had gotten the news at NYU Langone, a top-flight institution where we see our specialists. The overwhelming advice was to go to Memorial Sloan Kettering (MSK) in New York, the Gold Standard, we were told.

Given the restricted time frame, we expected MSK to build on NYU’s findings. But they had to re-do tests, to validate the results. Over the following months, I swallowed my anger and frustration, as the days filled with tests, biopsies, CT scans, MRIs, x-rays and hours spent waiting. The immunotherapy and chemotherapy had zero effect on killing any disease. I hugged Lou close as he comforted me when I couldn’t control the tears.

Lou suffered all the side effects — extreme fatigue, drug induced lung infection, steroids to deal with that, removal of huge amounts of fluid from his lungs, and, best/worst of all, the loss of over 30 pounds. Lou has never been fat. Now he is emaciated. I try not to show him how scared I am.

Not long ago, I heard a crash in the bedroom to find my 6’2″ formerly strong darling dazed on the floor.

There was the offer of one clinical trial. A hope glimmer. But it had mind-blowing side effects and wasn’t aimed at cancer with unknown primary. Lou decided to pass. I steeled myself to be strong for him.

So now we’ve enrolled in what’s called Home Hospice. It’s basically a space where there is no treatment, but you still hope for a magic bullet. Where I watch my husband become less every day.

Not long ago, I heard a crash in the bedroom to find my 6’2″ formerly strong darling dazed on the floor. Lou said he’d bent over to get his shoes and then started to fall without being able to control what was happening. The wall behind him was blood smeared. He had hit his head.

Feelings of Helplessness

Panic. Heart racing. Cloths to press on his head. An ice pack. The hospice said to do what I was doing. Asked if Lou wanted to go to the hospital. No. Didn’t know if I could get him up. But I did. The cut wasn’t deep, but I thought the bleeding would never stop. On his physician’s advice, Lou is no longer taking Eliquis, a blood thinner.

Last year I wrote an article for Next Avenue that flagged that falls can be the beginning of the end. Now it is shattering, personal knowledge.

I’ve cancelled almost everything. Since hospice, there’s minimal interaction with MSK and the long waits. We had to scrub our last session at MSK’s Center for Integrative Medicine. The acupuncture helped Lou to relax, but he was too exhausted to attempt to go.

A Lonely Road

It didn’t feel right to phone and cancel. I went to the appointment and spoke to the doctor. He counseled me to take care of myself. He asked me to keep in touch. His caring for Lou, and for us as a couple, is something I will always remember.

Lou doesn’t want to spend whatever is left of his life in a hospital, and I want to respect his wishes. My insides churn with helplessness.

A couple smiling together in Paris. Next Avenue
The couple on a trip to Paris, one of their favorite places.

My own NYU internist has scheduled a monthly video visit to check up on me, especially since I’ve lost more than 15 pounds unintentionally. And the local rabbi calls this agnostic at least once a week. Some friends have disappeared, but there are those who keep in touch. And, yes, I do have someone I can talk to. But it is a lonely road.

Over a year later, my 87-year-old husband has outlived his prognosis and is a shadow of what he was. But he is here. And I want him here.

Some people get inspired after a diagnosis. They reach for a goal or get everything in order. Lou is frustrated and bored, but he is too worn out to do much of anything. I want things however he wants them.

Mostly, he wants to sleep or read the newspaper or hug me. That’s what I cling to. That he’ll be there to cradle me in his arms me as long as possible. Sometimes we go to the sofa and lie with my head in his lap. Lou believes his job is to take care of me, and some of his distress is that he can’t anymore.

Sleep? Not so much. Exhausted. Deeply. What to do? Besides cry. Besides wish I could do more for this man who’s been my life for over 41 years. Because I can’t imagine my world without him. He’s my rock and my biggest fan, the one whose faith in me is stronger than my own. His all-embracing love is where I am home. Whatever I want to do, wherever I want to go, I want to share those experiences with Lou.

That’s the hardest part of Now. Because I’m with him in this no-man’s land, where we can only cling to each other and wait for the inevitable.

Of course, we would have tried anything, gone anywhere when we first heard Lou’s diagnosis and the medical predictions of our future. But if I’d known then what I know now, I would have encouraged Lou to make a different decision.

Regretting Endless Tests and Treatments

There are cancers that can be targeted. Cancer with unknown primary is not one of those. I hope anyone reading my words never faces what’s in front of us. But if you find yourself in this nightmare, here’s what I would say: Don’t spend whatever time you have going to doctors, submitting to endless tests and treatments, waiting in anonymous rooms filled with distracted, unhappy people. Sitting on uncomfortable chairs, being so vulnerable. Dealing with all-business staff that has all the time in the world, while your time is limited. And waiting. Waiting. Waiting.

If I had known then, what would I have done? I would have gone back to Paris with my husband, or we could have gone to the Broadway shows we missed.

If I had known then, what would I have done? I would have gone back to Paris with my husband, or we could have gone to the Broadway shows we missed. We would have reminded ourselves how lucky we were to be able to walk home from the theater. We could have taken in New York’s magisterial skyline from celebratory dining spots.

Now Lou is beyond tired. His legs give way and he falls, can’t get up. Sometimes I’m not strong enough, and we have to call for help. His MSK doctor says he’s fallen too many times and is not safe at home. Emotional overload. The doctor wants me to move him to an in-patient hospice. Lou knows not being home is a possibility. He is disconsolate.

No. I am not going to rush into anything. Moving furniture to make room for a hospital bed, even though Lou says he won’t use it. Never-ending efforts to schedule health aides. Medicare comes through with 15 – 20 hours a week. We now need 24/7. Trying not to think too far ahead.

Welcome to the third ring of hell. You may have read that because of COVID many health care workers died/changed careers/moved away. At the same time, more and more people need qualified help. Hours are spent trying to figure out what’s possible.

Recently my darling said, “What a terrible burden I’ve put on you.” I thought my heart would crack. “I don’t feel it as a burden,” I said, startled by my truth. What is breaking my heart is the fear that I won’t be able to help him, that I won’t know what the right thing is. Fortunately, the hospice physician and woman covering for him are knowledgable and compassionate.

So far, there is no pain. One blessing among the horrors. But he is suffering, and we are looking at a future of unknown — though not long — length.

Struggles of a Caregiver

As I’m writing this, Lou is visibly deteriorating. He can no longer turn himself easily in bed or rise to a sitting position without help. He can barely stand for a moment with assistance while he is moved from the bed to the wheelchair.

What is breaking my heart is the fear that I won’t be able to help him, that I won’t know what the right thing is.

I can’t imagine how people navigate this without a caring partner, but anyone taking on the caretaker role should know in advance: there is mighty little guidance. It’s learn-on-the-job. Case workers and nurses may or may not be thoughtful and compassionate, but you have to think of the questions to ask because too often no one volunteers information.

Are you willing to stay in because you don’t trust that the aide will keep your loved one safe? Or because the aide didn’t show up? Are you prepared to spend hours of your time trying to find coverage even though the agency assured you they would always be able to come through? Can you handle the blowback when you cancel what isn’t working? Can you deal with the additional cost? Are you prepared for the never-ending laundry? Can you function with catch-as-catch-can sleep, only a few hours each night?

My husband is dying. But he’s not gone yet. A few nights ago, he agreed to the hospital bed. He understood that if I don’t get some sleep, I won’t be able to be there for him. He hates the bed. Misses me at night. I miss him too.

Lou eats little, sleeps at odd hours, is restless at night. The aide has to wake me. Lou’s speech is now slurred. It’s hard to understand him. He is angry. He forgets. He wants the hospital bed and the strange people in the apartment gone. He wants me with him all the time. I am terrified.

Addendum: The Death of My Husband

In the daytime, he dozes, wakes, starts to read the newspaper, dozes, wakes, tries again to read. My plan was to write how I would put my arms around him, wanting him to know how much I love him. I was going to share how he would reach out to put his arms around me, wanting me to know how much he loves me.

On September 17th, Lou slept most of the day and night. He mumbled about wanting to go home. I held his hand, said he was home and I was with him. I used to call him my giant, and I told him that I would still choose him out of all the giants in the world. I said I would always be with him and he would be with me. He smiled, squeezed my hand and moved his lips to kiss me.

The next day, he woke and surprised me, wanting to brush his teeth, shave, shower. The aide helped him into the wheelchair and into the bathroom. Afterwards, I warmed some chicken soup. He reached for it and gulped down almost half a cup. Then he lay back to rest. Suddenly he was gasping for breath. And then he was gone.

I am numb. The aide gently repeats that Lou is not breathing. A convulsion of tears. I thought there were none left. Touching him. Taking his hand. Stroking his forehead. Kissing him. What do I do now? I am lost.

Call the hospice. They will send a nurse to sign the time of death. Call the funeral home. They will come. Then what? Vast emptiness. The rabbi calls and says I have to embrace life. Says that’s what Lou would want. Rationally I know he is right. Somehow, I will find a way. I just can’t imagine how.

This year, for our anniversary, June 27th, we had to cancel reservations at a restaurant with spectacular Manhattan views. Lou said it made no sense to go when he couldn’t eat much. He was devastated to disappoint me.

I said: “We’ll always have Paris.”

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