It may seem paradoxical, but dying can be a deeply creative process.
Public figures, authors, artists and journalists have long written about their experience of dying. But why do they do it and what do we gain?
Many stories of dying are written to bring an issue or disease to public attention.
For instance, English editor and journalist Ruth Picardie’s description of terminal breast cancer, so poignantly described in Before I say Goodbye, drew attention to the impact of medical negligence, and particularly misdiagnosis, on patients and their families.
American tennis player and social activist Arthur Ashe wrote about his heart disease and subsequent diagnosis and death from AIDS in Days of Grace: A Memoir.
His autobiographical account brought public and political attention to the risks of blood transfusion (he acquired HIV from an infected blood transfusion following heart bypass surgery).
Other accounts of terminal illness lay bare how people navigate uncertainty and healthcare systems, as surgeon Paul Kalanithi did so beautifully in When Breath Becomes Air, his account of dying from lung cancer.
American writer and illustrator Maurice Sendak drew people he loved as they were dying; founder of psychoanalysis Sigmund Freud, while in great pain, refused pain medication so he could be lucid enough to think clearly about his dying; and author Christopher Hitchens wrote about dying from oesophageal cancer despite increasing symptoms:
I want to stare death in the eye.
Faced with terminal cancer, renowned neurologist Oliver Sacks wrote, if possible, more prolifically than before.
And Australian author Clive James found dying a mine of new material:
Few people read
Poetry any more but I still wish
To write its seedlings down, if only for the lull
Of gathering: no less a harvest season
For being the last time.
Research shows what dying artists have told us for centuries – creative self-expression is core to their sense of self. So, creativity has therapeutic and existential benefits for the dying and their grieving families.
Creativity provides a buffer against anxiety and negative emotions about death.
Creativity may give voice to our experiences and provide some resilience as we face disintegration. It may also provide agency (an ability to act independently and make our own choices), and a sense of normality.
French doctor Benoit Burucoa wrote art in palliative care allows people to feel physical and emotional relief from dying, and:
[…] to be looked at again and again like someone alive (without which one feels dead before having disappeared).
A way of communicating to loved ones and the public
When someone who is dying creates a work of art or writes a story, this can open up otherwise difficult conversations with people close to them.
But where these works become public, this conversation is also with those they do not know, whose only contact is through that person’s writing, poetry or art.
This public discourse is a means of living while dying, making connections with others, and ultimately, increasing the public’s “death literacy”.
Some people read narratives of dying to gain insight into this mysterious experience, and empathy for those amidst it. Some read it to rehearse their own journeys to come.
But these purpose-oriented explanations miss what is perhaps the most important and unique feature of literature – its delicate, multifaceted capacity to help us become what philosopher Martha Nussbaumdescribed as:
Not everyone, however, has the opportunity for creative self-expression at the end of life. In part, this is because increasingly we die in hospices, hospitals or nursing homes. These are often far removed from the resources, people and spaces that may inspire creative expression.
And in part it is because many people cannot communicate after a stroke or dementia diagnosis, or are delirious, so are incapable of “last words” when they die.
Perhaps most obviously, it is also because most of us are not artists, musicians, writers, poets or philosophers. We will not come up with elegant prose in our final days and weeks, and lack the skill to paint inspiring or intensely beautiful pictures.
But this does not mean we cannot tell a story, using whatever genre we wish, that captures or at least provides a glimpse of our experience of dying – our fears, goals, hopes and preferences.
[…] there will still be epic poems, because every human life contains one. It comes out of nowhere and goes somewhere on its way to everywhere – which is nowhere all over again, but leaves a trail of memories. There won’t be many future poets who don’t dip their spoons into all that, even if nobody buys the book.
Mary was dying. As her children gathered at her bedside, she began to cradle a nonexistent baby. She cooed and cuddled it in her arms, showing a happiness that was at odds with her physical suffering. Her children turned to the doctor, concerned that their mother was hallucinating. But he encouraged them to let her act out a scene that only made sense to her.
Later, they learned that Mary had delivered a stillborn baby years before she had her other children. What had seemed like a bizarre hallucination actually seemed to help address a trauma she had held inside for years. She died peacefully soon after.
Christopher Kerr, the hospice doctor who witnessed Mary’s actions, credits her with helping change his view on death.
Kerr has interviewed thousands of dying patients about their visions and dreams, which often include dead family members or pets or which recreate past scenes from which patients extract meaning or healing. Patients describe seeing dead family members in the room, feeling a comforting presence nearby, or tying up unfinished emotional business relating to past slights and traumas.
The book is a challenge to doctors, whom Kerr encourages to honor and listen to the dying.
“We need to bring doctors back to the bedside, to their roots as comforters of the dying rather than as mere technicians trying to extend life at all costs,” he writes.
But it beckons to readers, too, encouraging them to open up to how dying patients make meaning of their own lives. By listening to patients, says Kerr, “dying becomes less about death than about life’s resilience.”
This phrase, generally used during burial ceremonies, suggests that every life will one day come to an end. Today, the flurry of startups businesses seeking to change timeless traditions is challenging even this. Now, one can obtain eternal life by becoming compost witnessing rebirth as a tree.
Traditional funerals, in the form of cremation, embalming and burial, are now giving way to new alternatives with the emergence of new funeral startups that aim to disrupt the overpriced services sector by offering something cheaper and better.
The market they are targeting is sizable. With nearly 2.6 million deaths every year in the United States, a new class of entrepreneur sees plenty of opportunity to innovate.
Considering the fact that 41.4 million Americans live below the poverty line and that 40 percent of US citizens cannot afford an unexpected expense of just $400, it is clear that a majority of Americans would be unable to absorb the average cost of a funeral, which sits at around $8000.
Due to the nature of the business (that everyone is bound to use the service at some point) it was long believed that nothing could jeopardize the funeral industry. Yet, due to the high cost and availability of cheaper alternatives, it seems that all sectors of the industry have been reporting losses over the past decade.
Currently, the coffins and caskets market is worth some $550 million, but that belies an annual decline rate of 3.6% over the last five years. That rate is expected to accelerate to about 4.1% in the next five years. Skilled embalmers have been particularly hard hit, with employment in that profession declining 28% in less than 10 years.
Back in 2015, cremation surpassed traditional burial rates across the country for the first time, largely because of consumer attempts to reduce costs associated with funerals.
However, for environmentally conscious Millennials, even cremation is out of the question because the process emits some 270,000 tons of carbon dioxide each year. That is equivalent to the CO2 from 22,000 homes, or the emissions of 50,000 cars.
Millennials, as tech-savvy and environmentally conscious consumers, are driving the popularization of “green burials”, which are both affordable and involve fewer synthetic chemicals.
Green burials cost an average of $2,000, which includes a plot and environmentally friendly casket. For those who desire even more eco- and wallet-friendly solutions, there is an option to ditch the tombstone and chose a GPS marker instead.
Composting is also on the rise as a unique way for one to give back to the planet more directly. The process involves sealing a body into a container with wood chips, alfalfa and hay and adding heat to stimulate microbial munching.
There are still a few legal issues to be resolved around the compost funeral, but the world’s first funeral home dedicated to composting human beings is set to open in 2021 in the state of Washington, the first state to legalize such services last year.
An even newer trend is the “tree burial” during which ashes are placed in the soil with a seed to plant a tree that won’t affect the tree’s natural DNA.
There are also green burial options that aren’t wallet-friendly, and far surpass the traditional funeral costs. One such option is the space burial in which ashes are launched into space via a rocket.
And how about Cryonics? At a cost of a minimum of tens of thousands of dollars, a handful of companies are willing to preserve a body in the hope that one day the technology will exist to bring the deceased back to life.
The funeral industry though it was immortal. It’s not. Today’s consumers, even beyond the grave, want options and startups are more than willing to give them those options.
There’s a movement afoot, and as the new Broadway Beetlejuice show suggests; it’s all about death. From Death Cafes and Death Over Dinner, to the surge in new Netflix shows like Dead To Me and After Life, new life is pouring into old conversations about death. After decades kept firmly backstage, people are talking about death and grief, and bringing difficult conversations into the limelight.
Until now, the typical North American death-phobic response we have upon hearing of someone’s loss is reduced to a quick, “I’m sorry for your loss,” on Facebook. We may send flowers, or a card, but these often feel like empty gestures that do little to really support anyone. Most people who have just lost someone they love are in very real need of help, and fast. Traditional supports seem antiquated, expensive, and worse – impersonal.
Fortunately, help is here. In Baltimore, Chicago, New York, and Seattle, a group of female founders are on a mission to revolutionize death care and make sure no one grieves alone. Motivated by their own experiences with death, these women have created easy-to-use, thoughtful tools to help people navigate loss. Of course, death sucks, any way you look at it. No online tool can bring our loved ones back. But these women are working hard to normalize conversations about death, and make it easier – much easier – for people to help each other through grief.
First, meet Brooklyn-based Liz Eddy and Alyssa Ruderman, who co-founded Lantern to provide people with step-by-step guidance on how to navigate their lives before and after a death. When Liz’s Grandma died, she turned to Google in search of answers to her myriad questions about everything from funeral planning to closing accounts. What she found was a morass of unwieldy content, and none of the hand-holding she was looking for. So, Liz and Alyssa created Lantern, as a single source of guidance and information for end of life and death planning. It’s free to use their custom checklists and get help making your loved one’s funeral or celebration of life, everything you want it to be. I love that Lantern makes people feel empowered at a time in their lives when control is hard to come by.
Once you’ve survived the funeral, the daunting realities of grief come tumbling down. Litsa Williams and Eleanor Haley co-founded What’s Your Grief after they each lost a parent. Based in Baltimore, Litsa and Eleanor have built an incredible suite of practical and specific content and resources to help grieving people find a path forward. With their focus on education, exploration and expression, What’s Your Grief offers articles as well as affordable online courses on topics ranging from how to sort through a loved one’s belongings or develop strategies for surviving the holidays while grieving.
If you’re looking for ongoing grief support, Seattle-based Grief Coach sends personalized text messages all year long, based on your loss. And if you have friends and family who want to help, but aren’t sure how, they’ll receive tips and reminders too. Everyone’s messages will be customized based on things like cause of death, age, and your relationship to the person who has died.
I was inspired to create Grief Coach after the death of my husband and (a decade later) his best friend. After delivering the eulogy at my friend’s funeral, I was overwhelmed by the countless friends and family members who wanted to apologize for not having been there for me when my husband died. They were afraid, they said, and just didn’t know what to do. I created Grief Coach to answer the question of “I want to help, but don’t know how,” so that no-one would have to grieve alone.
Also in Seattle is Laura Malcolm, who founded Give InKind after losing her daughter. Laura had people around her who she knew wanted to help, but instead found herself in a room literally overflowing with flowers with no idea what to ask for, but a long list of things she wasn’t able to cope with on her own.
Give InKind brings together care calendars, fundraising, and wishlists. If you’re looking for a way to coordinate support, raise money for funeral expenses, and make it easy for friends and family to support you after a loss, GiveInKind is a great place to start. It’s free to create a page, and from there you can invite others to join and contribute.
And finally meet Ali Briggs and Rachele Louis in Chicago, who founded LifeWeb 360 after a friend’s brother died unexpectedly. As the years passed, Ali’s friend saw people’s memories of his brother fading away. He was worried that he couldn’t remember the sound of his brother’s voice anymore. LifeWeb 360 is a multimedia scrapbook that makes it easy for people to join together to collect and share memories that are then stored and shared online.
These eight women have created five valuable tools that recognize the power friends & family have to make a difference, after a loss.
LA mortician, Caitlyn Doughty, captures the no-nonsense spirit of these founders best, reminding us that; yes, there’s a movement afoot – but we don’t want to be a movement. Death is part of life, and what we really want is to normalize difficult conversations and bring death & dying into our day-to-day lives.
With founders like these women taking the reins, I have no doubt that we’re moving quickly towards a world where everyone has the help they need, after a death.
What a neurologist learned when his brother-in-law fell into a coma
In neurology, there’s a “middle ground” between life and death that providers and patients’ family members alike struggle to navigate—but a new subspecialty could help improve communication around patients’ care, Joseph Stern, a neurologist who’s found himself on both the provider and family side of these difficult brain injuries, writes for the New York Times‘ “Well.”
A family member’s aneurysm leads to difficult decisions
Two years ago, Stern’s brother-in-law, Pat, collapsed with a brain hemorrhage from a ruptured cerebral aneurysm and was taken to UCLA Medical Center. Stern, as Pat’s legally designated health care power of attorney, gave permission for Pat to undergo a “surgical clipping of his ruptured aneurysm” and flew to California to oversee the rest of Pat’s care and communicate those care decisions with Pat’s family.
“Technically, surgery went well,” Stern writes. “But Pat never regained consciousness.” While Pat wasn’t brain-dead, “he remained deeply comatose,” Stern writes.
This, Stern writes, left Pat in a complicated, but all too common, “middle ground” in medicine: he’d experienced a “neurologically devastating injury without brain death.”
In these cases, Stern writes, care-related “decisions can be more difficult” for both family members and providers to know when to stop life-sustaining care. While brain death “is stark and final,” Stern writes that patients with severe neurological injuries who are not brain dead can survive on life-sustaining supports though in many cases they may never wake again.
Stern and Pat’s neurosurgeon, Gregory Lekovic, decided to give Pat a week to improve, and if he didn’t, Lekovic advised the family not pursue more aggressive measures, such as a tracheostomy and G-tube placement. “Lekovic and I worried it would be difficult to back off after those procedures had occurred,” Stern writes.
Pat didn’t neurologically improve after a week, and it was likely that he “would never regain consciousness,” Stern writes.
Stern and Pat’s family had decided to stop treatment, but on the morning they planned to do so one of the neuro-ICU specialists gave them reason to pause. “[O]ne of the neuro-ICU specialists presented a scenario in which Pat might wake up, become able to walk with assistance, and participate with his family,” Stern writes. However, “When pressed, the doctor admitted he was giving us the best possible outcome, rather than the most likely outcome,” Stern writes.
Stern and the family consulted again with Pat’s neurosurgeon, Lekovic, who said if it were his loved one, he’d “make the decision to end treatment,” Stern writes. According to Stern, Lekovic “seemed genuinely sad” saying this.
The importance of empathy and connection
“Doctors often think it is most important to be precise and not make mistakes; to predict the future with medical certainty,” Stern writes. “In my experience, connection and empathy are far more important than certainty. Patients and families want to know that you care about them and that you appreciate their pain in difficult circumstances.”
To help guide families and caregivers through this complicated medical condition, Stern notes that a new field, called neuropalliative care, has emerged. In neuropalliative care, providers “focus ‘on outcomes important to patients and families’ … ‘to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.'”
Health care providers shouldn’t “focus on the short-term or allow care to be driven by procedures, losing sight of outcome and quality of life,” Stern writes. “We need to approach our patients and their families with open hearts, acknowledging their suffering and the uncertainty we all experience.”
In the case of Pat, Stern explains that his family, particularly Pat’s sons, “appreciated the truth when I explained their father’s prognosis.” Of course, the sons were “devastated at the prospect of losing him,” Stern writes, but “honesty and inclusion in decision-making were important in helping them move forward with their lives”
“I’m not anti-hospice at at all,” says Joy Johnston, a writer from Atlanta. “But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”
Even though surveys show it’s what most Americans say they want, dying at home is “not all it’s cracked up to be,” says Johnson, who relocated to New Mexico at age 40 to care for her dying mother some years ago, and ultimately wrote an essay about her frustrations with the way hospice care often works in the U.S.
Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She says during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter.
According to a recent Kaiser Family Foundation poll, seven in 10 Americans say they would prefer to die at home, when the time comes. And that’s the direction the health care system is moving, too, hoping to avoid unnecessary and expensive treatment at the end of life.
The home hospice movement has been great for patients, says Vanderbilt palliative care physician Parul Goyal — many patients are thrilled with the care they get.
“I do think that when they are at home, they are in a peaceful environment,” Goyal says. “It is comfortable for them. But,” she notes, “it may not be comfortable for family members watching them taking their last breath.”
Still, when it comes to where we die, the U.S. has reached a tipping point. Home is now the most common place of death, according to new research, and a majority of Medicare patients are now turning to hospice services to help make that possible. Fewer Americans these days are dying in a hospital, under the close supervision of doctors and nurses.
Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease, to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management and quality of life, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.
Usually, hospice care is offered in the home, or sometimes in a nursing home.
Since the mid-1990s, Medicare has allowed the hospice benefit to cover more types of diagnoses, and therefore more people. As acceptance grows among physicians and patients, the numbers continue to balloon — from 1.27 million patients in 2012 to 1.49 million in 2017.
According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care.
For example, one intimate task in particular changed Joy Johnston’s view of what hospice really means — trying to get her mom’s bowels moving. Constipation plagues many dying patients.
“It’s ironically called the ‘comfort care kit’ that you get with home hospice. They include suppositories, and so I had to do that,” she says. “That was the lowest point. And I’m sure it was the lowest point for my mother as well. And it didn’t work.”
Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family, says Dr. Joan Teno, a physician and leading hospice researcher at Oregon Health and Science University.
“Imagine if you’re the caregiver, and that you’re in the house,” Teno says. “it’s in the middle of the night, 2 o’clock in the morning, and all of a sudden, your family member has a grand mal seizure.”
That’s exactly what happened with Teno’s mother.
“While it was difficult for me to witness, I knew what to do,” she says.
In contrast, Teno says, in her father’s final hours, he was admitted to a hospice residence. Such residences often resemble a nursing home, with private rooms where family and friends can come and go, and with round-the-clock medical attention just down the hall.
Teno called the residence experience of hospice a “godsend.” But an inpatient facility is rarely an option, she says. Patients have to be in bad shape for Medicare to pay the higher in-patient rate that hospice residences charge. And by the time such patients reach their final days, it’s often too much trouble for them and the family to move.
Hospice care is a lucrative business — now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren’t building dedicated hospice units or residences, in general, mostly because such facilities aren’t profitable enough.
Joe Shega, chief medical officer at for-profit Vitas, the largest hospice company in the U.S., insists it’s the patients’ wishes, not a corporate desire to make more money, that drives his firm’s business model. “Our focus is on what patients want, and 85 to 90 percent want to be at home,” Shega says. “So, our focus is building programs that help them be there.”
For many families, making hospice work at home means hiring extra help.
‘I guess I’ve just accepted what’s available’
At the kitchen table of her home outside Nashville, hospice patient Jean McCasland is refusing, on the day I visit, to eat a spoonful of peach yogurt. Each morning, nurse’s aide Karrie Velez pulverizes McCasland’s medications in a pill crusher and mixes them into her breakfast yogurt.
“If you don’t, she will just spit them out,” Velez says.
Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get some kind of break each day.
When Velez is not around, John McCasland — Jean’s husband of nearly 50 years — is the person in charge at home.
“I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able,” John says.
But what hospice provided wasn’t enough help. So he’s had to drain their retirement accounts to hire Velez, a private caregiver, out-of-pocket.
Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce.
Medicare says hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.
Jean McCasland’s husband hasn’t complained. “I guess I’ve just accepted what’s available and not really thought beyond what could be,” John says. “Because this is what they say they do.”
Families rarely consider whether they’re getting their money’s worth, because they’re not paying for hospice services directly: Medicare gets the bills. John keeps his monthly statements from Medicare organized in a three-ring binder, but he’d never noticed his agency charges nearly $200 a day, whether there is a health provider in the home on that day or not.
That daily reimbursement also covers equipment rentals and a 24-hour hotline that lets patients or family members consult a nurse as needed; John says that gives him peace of mind that help is a phone call away. “There’s a sense of comfort in knowing that they are keeping an eye on her,” he says.
The rate that hospice charges Medicare drops a bit after the patient’s first two months on the benefit. After reviewing his paperwork, John realizes Medicare paid the hospice agency $60,000 in the first 12 months Jean was on hospice. Was the care his wife got worth that?
“When you consider the amount of money that’s involved, perhaps they would provide somebody around the clock,” he says.
Sue Riggle is the administrator for the McCaslands’ hospice agency, and says she understands how much help patients with dementia need.
“I think everybody wishes we could provide the sitter-service part of it,” says Riggle. “But it’s not something that is covered by hospices.”
Her company is a small for-profit business called Adoration; she says the agency can’t provide more services than the Medicare benefit pays for.
I checked in again with John and Velez (Jean’s long-time private caregiver) this winter. The two were by Jean’s side — and had been there for several days straight — when she died in October. The hospice nurse showed up only afterward, to officially document the death.
This experience of family caregivers is typical, but often unexpected.
“Our long-term care system in this country is really using families — unpaid family members,” she says. “That’s our situation.”
A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to choose otherwise for themselves.
Social worker Coneigh Sea has a portrait of her husband that sits in the entryway of her home in Murfreesboro, Tenn. He died of prostate cancer in their bedroom in 1993.
Enough time has passed since then that the mental fog she experienced while managing his medication and bodily fluids — mostly by herself — has cleared, she says. But it was a burden.
“For me to say that — there’s that guilt,” she says, then adds, “but I know better. It was a burden that I lovingly did.”
She doesn’t regret the experience, but says it is not one she wishes for her own grown children. She recently sat them down, she says, to make sure they handle her death differently.
“I told my family, if there is such a thing, I will come back and I will haunt you,” she says with a laugh. “Don’t you do that.”
Sea’s family may have limited options. Sidestepping home hospice typically means paying for a pricey nursing home, or passing away with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid.
As researchers in the field look to the future, they are calling for more palliative care, not less — even as they also advocate for more support of the spouses, family members and friends who are tasked with caring for the patient.
“We really have to expand — in general — our approach to supporting caregivers,” Ornstein says, noting that some countries outside the U.S. pay for a wider range, and longer duration of home health services.
“I think what we really need to do is be broadening the support that individuals and families can have as they’re caring for individuals throughout the course of serious illness,” Ornstein says. “And I think that probably speaks to the expansion of palliative care in general.”
As Canada’s population ages, there is increasing demand on our health-care system. A simple blood test may help doctors predict who is at risk of imminent death, according to a study published Monday in the Canadian Medical Association Journal.
Dr. Stig Bojesen and colleagues from the University of Copenhagen studied 108,135 Danish people ages 20 to 100 years who were part of the Copenhagen General Population Study. During the study period, a total of 10,372 people died. The researchers combed through the health records of those who died in search of abnormal blood test results.
They found that the people who died during the study period had lower levels of a white blood cell called a lymphocyte. The researchers crunched the numbers. Compared with those with a normal lymphocyte count, those patients with a low lymphocyte count were 1.6 times more likely to die during the study period.
There are several possible ways in which a low lymphocyte count might be connected to an early demise.
One clue is that the current study found that a low lymphocyte count was associated with an increased risk of death from cancer, cardiovascular disease, respiratory disease, infections and other causes. These are chronic diseases that are common in older patients.
Lymphocytes are part of the immune system and the immune system is necessary to help patients fight off chronic diseases. The researchers speculated that a weak immune system might be one of the reasons why diseases like cancer and respiratory disease are more common the older we get.
Another theory is that a low lymphocyte count might indicate that the patient is frail. We know from other research that frailty can lead to illness and death.
Other tests to predict risk of imminent death
The lymphocyte count is not the only blood test that can help predict the risk of dying.
A number of studies have looked at another simple blood test called C reactive protein or CRP. Elevated levels of CRP are associated with increased risk of imminent death. A recent study found that patients in Japan who come to the emergency department with a heart attack and who have a high CRP level are more likely to die during the ensuing hospital stay.
A 2019 study in the journal Nature Communications identified 14 new biomarkers that can be measured in the bloodstream that could predict the risk of dying within five or 10 years. The study found these tests would likely be more accurate than the conventional risk factors (for example, smoking and heart disease) that doctors use currently.
The researchers say they hope the findings help doctors identify patients at risk of death within two years. Such patients might be followed more closely for signs of life-threatening illnesses and perhaps treated more aggressively. Patients could then be re-tested to see if the lymphocyte count, CRP and other blood tests returned to normal levels as the imminent risk of death is reduced.
Down the road, researchers say they would like to use those abnormal tests and biomarkers to design targeted treatments that might stave off death.
It’s worth keeping in mind that studies like this one confirm what doctors already know. Studies show that doctors are good at identifying patients whose imminent death would not surprise them.
I think patients and their families might be very surprised that their doctors believe them at imminent risk of dying. I believe doctors need to share that information with patients and families to encourage them to live healthier or at very least prepare them for what lies ahead.