When Rechelle Leahy’s husband Allistair was diagnosed with stage-four colon cancer in 2013, they faced a difficult decision: when, and how, they would tell their two children – aged just six and four – about his impending death.
It’s a situation no one wants to find themselves in but, given the inevitability of death (and with one in 20 Australian children losing a parent before the age of 18), it’s a topic we ought to be prepared to tackle.
So how to do it?
According to the paediatric psychologist Deirdre Brandner, parents of young children can start this discussion with a focus on small creatures or plants, giving children the basic understanding that “living things die”.
“The death of pets, whether they are ours or others’, can be a helpful way to introduce this topic,” she says. “Talking about how we felt when a pet or someone we loved died will allow children to better understand the grief process.”
She says while children under five will struggle to understand that death is irreversible and universal, it’s still important that they’re told when someone they know has died, though parents might consider the amount of information shared.
“Keep explanations brief but honest,” she advises. “Young children tend to ask more direct questions and often ask the same questions over and over again because they are trying to process this event. Sometimes we want to avoid discussing death with children because we are worried or fearful about how they will cope, [but] talking to children about death will allow them to feel more secure and supported.”
Matthew Kwoka of Southern Cross Funerals, who runs a video series called Death Defined that aims to break the stigma around the “death conversation”, says children often gain an understanding of death when bearing witness to someone’s declining health during a terminal illness, but sudden or tragic deaths can be more traumatic.
“[The] immediate departure of a parent … is a totally different kind of grief,” he explains. “The shock factor is more traumatic for all involved and is a far more difficult situation to explain to a child.”
In such cases, Brandner suggests planning your talk first (running it by a friend can be helpful), speaking openly in language children will understand, using words like died or dead over “went to sleep” or “passed away”, which create confusion and do not help the grieving process.
“Tell children the truth and do so as soon as you can,” she advises. “Be calm and set the emotional tone. Carefully watch for your child’s reaction and follow their lead. Reassure them that they are safe and cared for. Don’t overwhelm them with too much information at the beginning but be there to answer questions in the coming days.”
While their responses will depend on their age and developmental stage, Brandner says it’s important to give children time to process the information, to validate their feelings, and to remember that there’s also “much variability in how any of us grieve”.
She suggests rituals, experiences and routines as a way to help the process. This could include creating memory books or slideshows to remember the person, along with planting their favourite flower or making their favourite meal, or lighting a candle. She also suggests sticking to children’s regular routine where possible, to bring a sense of normalcy to their days.
“Young children in particular need reassurance that their life will go on no matter what happens,” she says. “Some children will not display any adverse reactions, but others may exhibit increases in irritability, anxiety, clinginess or anger outbursts.
“There can be changes in appetite, losing themselves in screens or retreating to their rooms. We do need to provide comfort and flexibility in supporting children during this time. However, children respond and are best supported by routine and consistency. It makes them feel secure that their world is still the same.”
Leahy says her boys were understandably sad after their father’s death. They’d ask questions about whether Allistair could see them, if he was missing them and what he would do now that he wasn’t there in person any more. As a family they’ve been open about their feelings since Allistair’s death: celebrating his birthday with cake and his favourite movies, and releasing balloons on the anniversary of his death with notes attached, telling him what they have been up to.
“The conversation [about his death] was the hardest we had as a family,” Leahy says. “It was devastating to know that the loss of the boys’ dad would leave such a big gap in their lives, but it was also a way to show the boys that it was OK to have complicated emotions, to show them that adults get sad too.”
After losing her mother, grandmother and husband in 10 years, Leahy launched iDecide, a platform with “bank-level” security that allows users to plan and store crucial information for loved ones in case of their death. She says being open and honest helped alleviate her children’s anxiety at an incredibly tough time.
“We need to include our families in this conversation,” she says. “It empowered Allistair to manage the narrative around his own death and [helped] the boys understand that when he died it was not him abandoning them, but that death is part of the lifecycle and he would still be with them every day because he is part of them.”
American culture, as a whole, has a lot of Puritanical holdovers, especially around death. We just don’t like to talk about it, or when we do, it gets classified as morbid — an unhealthy interest. Despite death being a natural part of life, we keep it separate from everything else and fear it. We don’t talk about what we want to happen after we shuffle off this mortal coil until the curtain is just about to close on our final act of life, to the point where if someone dies unexpectedly, it’s up to their family to guess what they want done, and try not to get sucked into the whims of the funerary business. There’s a lot of options out there beyond just cremation or casket burial, not that there’s anything wrong with them if that is your choice (beyond the ecological ramifications). But that’s where the death positive movement and death positive books come in.
So what is the death positive movement? Built upon death centered movements reaching back as far as the 1970s, this modern iteration is focused on removing the fear around death. It aims to show that it’s not morbid to talk about death in “polite society,” but in fact is part of living in a healthy society. The movement works to educate others on their options around death, fights to ensure that people have a right to choose how they die, and that they have access to those choices. Being death positive doesn’t mean that you are happy when someone dies, it just means you’re more willing to discuss your grief and experiences around death. Death isn’t something to be sequestered away in some basement mortuary or behind closed doors at a funeral home. To help guide you into that frame of mind, I (a thanatologist) have some recommendations to welcome you into the death positive movement.
It couldn’t be a list of death positive books if I didn’t include at least one book by Caitlin Doughty. She could make up most of a list by herself, honestly. She’s one of the founding members of The Order of the Good Death, one of the current driving forces in the death positive movement. She’s also the individual behind the Ask a Mortician videos. In From Here to Eternity, Doughty travels the globe, researching different death traditions from Mexico’s Dia de los Muertos to the Tana Torajas’s death involved lives. She poses the question of just what is a good death, and is the way Americans approach death really the best? Can’t we do better? If you’re brand new to the movement, this is the book you want to start your journey.
Did you know that we are currently outliving our bodies and are butting up against the natural lifespan of humans? We have made so many advances in medicine that our bodies cannot keep up and we are medically prolonging our lives. Now, this isn’t necessarily a bad thing, but in some cases, this does mean that suffering may be prolonged as well, and that is exactly what Atul Gawande discusses here. He argues that we should be able to choose how we die, and be able to die on our own terms. He also holds nothing back, letting you know exactly what will happen to your body as you age and after you die. It can be kinda gross. You’ll learn what hospice and assisted living is like too, with first hand accounts from both the elderly and the staff. This is a must read for everyone.
So you’ve died, got through this thing called life, and had your affairs in order so your family knew what you wanted in death and got the ball rolling, so to speak. You’re officially a cadaver. What’s next? Mary Roach has the answer for you. And not just answers from modern day autopsies and medical discussions: you’ll learn about cadavers that have changed the course of history, different death rituals across time and cultures, what donating your body to science really means, and other various stories about humans after death. It can get a little gross, but there are too many jokes to laugh at to get too skeeved out.
Death is a difficult topic to broach with children, whether it’s in preparation for a funeral of a loved one, or explaining why their beloved fish is swimming upside down. This book is a good place to start. It focuses on four siblings who live with their grandmother, who is slowly declining. The four of them come up with a plan to stall Death when he comes for her, and he does, inevitably, as he does for us all. But he takes the time to tell a story, a story that helps them understand the connection between life and death, joy and grief. Death is a complicated subject to teach, but this picture book handles it magnificently, teaching how to say goodbye in a way that is heartfelt and only a little bit tear-jerking.
While this, admittedly, leans more towards a more academic-type of text, it’s still deeply important to read, especially with a conversation centered on death. This book is the first look into the social, cultural, and political history of death within a country, extending all the way back to the sixteenth century. Death is an important part of Mexican identity, and Lomnitz demonstrates that expertly, laying out clearly the death practices of the pre-Columbian age, how colonization and imperialism affected the culture (especially in regards to Catholic diaspora) and even touches upon the new religious movement around Nuestra Señora de la Santa Muerte, more colloquially known as Santa Muerte.
Learning about how a culture thinks often requires looking at the stories it tells itself. Seeing how a culture views death is no different, nor is reading cultural ghost stories. This book catalogs some of the more recognizable ghost legends from Japan. It also looks at their place within Japanese culture as a whole, and the varied views of death within the country, especially those rooted in pre-Buddhist beliefs. This is another scholarly level of work, but is still accessible to those willing to pick it up, and it’s a short book as well, only about 162 pages.
One cannot talk about death, both the study of and the laws that essentially regulate the management of it, without acknowledging the repatriation efforts focused on Indigenous remains. This book lays out the constant struggle of Native Americans to reclaim remains of family members that were appropriated and sold to collectors or museums by colonists. It traces the histories of laws surrounding the subject, as well as the cultural reasons for both sides of the fight, before finally culminating in the fight that brought about NAGPRA: the Native American Graves Protection and Repatriation Act.
Written by a doctor who practiced palliative care for 30 years, this book is a meditation on how to greet death gently, with eyes wide open, rather than ignoring what is coming. Told through case studies of patients, Dr. Mannix argues that having clarity around what will happen before, during, and after death is therapeutic, and we shouldn’t forestall death simply due to the terror of it. We must find the line between what is enhancing life versus extending suffering out of fear.
There are few communities in the United States that have as close a relationship with death as the Black community. Not just a close relationship, but a complicated one. From wrongful deaths and executions to malpractice at the hands of those in the death-care industry, death is an important facet of Black identity. Using interviews, archival research, and analyses of literature, film, and music, Karla F.C. Holloway investigates the myths, rituals, politics, and history of Black death practices. It gets heavy at times, even for a book about death, covering lynchings and medical malpractice and neighborhood violence and plots full of unmarked graves, even the story of her son’s death and how it drove her to the subject of death. But nonetheless, it’s an important read, especially considering the bones the United States has been built upon.
Palliative care can provide relief to people with severe, but not necessarily life-ending, health conditions. But often patients — and their doctors — don’t realize they can take advantage of a team-based treatment approach that may include social workers and community support.
“The big misconception about palliative care in general is that you need to be dying to get it,” said Dr. Andrew Esch, a palliative care specialist and consultant for the Center to Advance Palliative Care (CAPC) in Tampa, Fla.
The pandemic has helped counter that view, Esch and others told Next Avenue, as physicians see the benefits to people living with COVID-19 and their families. A palliative care team aims to take a holistic view of the patient’s world rather than focusing solely on treating the primary condition.
Dr. John Mulder, of Spring Lake, Mi., executive director of palliative care training center Trillium Institute, uses “life-defining” or “life-altering” to identify conditions that might benefit from palliative care.
“Getting palliative services doesn’t mean that you are somehow giving up on treating an illness. It’s quite the opposite.”
“Many, many individuals as they navigate their lives are going to be diagnosed with something that is going to forever change them, and it’s going to impact their longevity, impact their quality of life, and can place some burden of suffering upon them,” he said.
“What we do in palliative care is acknowledge the fact that we have something we can’t fix,” Mulder continued. “It might be modifiable, it might be manageable, but we can’t fix it.”
The Symptom-Based Approach of Palliative Care
He added, “You don’t have to be imminently dying to get palliative services. Getting palliative services doesn’t mean that you are somehow giving up on treating an illness. It’s quite the opposite.”
People with cancer, for example, can rely on the symptom-based approach of palliative care to build their strength so they’re better able to withstand chemotherapy, he said. People with conditions like multiple sclerosis or Parkinson’s disease can also benefit, as can those with Alzheimer’s disease.
Palliative care is “really appropriate for anybody with a diagnosis of a serious illness, regardless of prognosis,” said Brynn Bowman, CAPC’s chief executive officer. Most insurance plans cover palliative care just as they would any other specialist service. CAPC manages a website that can help patients find palliative care providers by ZIP code.
“What palliative care aims to do is provide relief from the symptoms and stress of the illness,” Bowman said. That may include managing pain and other symptoms, supporting the family, or helping people match their treatment options to their goals.
“The point is to improve the quality of life for patients and families,” she said.
“Palliative care is based on need, not prognosis,” Esch said, adding that the earlier the team gets involved, the better.
Misconceptions About Palliative Care
Misconceptions about palliative care don’t appear to be limited to the public. Physicians often associate it with end-of-life care and are hesitant to recommend it early in a patient’s illness journey, palliative care specialists said.
“It’s really clear that the medical system isn’t telling patients at the front line of their disease” what to expect, said Katy Lanz, chief strategy and product officer at Personal Care Medical Associates, a geriatric and palliative care company in Pittsburgh.
“Many well-intended, wonderful, smart physicians still are confused about what options people have,” she said.
Often, a doctor will diagnose a patient with a serious condition “but not tell them it’s a disease that one day ends their life,” Lanz said. “There are decisions associated with that disease we should talk about with them while they’re well.”
‘Long COVID’ Brings a Shift in Perspective
The COVID-19 pandemic has boosted demand for palliative care and shifted medicine in ways that are likely to bring the specialty to the forefront, practitioners said.
“COVID has shined a light on the value of palliative care, especially now that we’re seeing ‘long COVID’ patients,” said Esch.
The complex nature of the disease and its effects on family members and caregivers make COVID-19 well suited to a team-based approach. “There’s been a real acceleration” in reliance on palliative care since the pandemic started, Esch said.
“Our volumes are way up,” Esch said. “Most teams are busier now than they’ve ever been.”
According to Esch, a palliative care approach helps with the “brain fog” many people experience after spending time in an intensive-care unit, as well as the “lingering malaise” many COVID sufferers report.
The general malaise brought about by the pandemic has also brought palliative care into focus, Esch said.
“There’s almost a parallel epidemic of a mental health crisis right now,” and people with underlying conditions are seeing their symptoms exacerbated by stress even if they haven’t contracted the virus themselves, he said, adding, “There’s a lot of suffering right now, and that’s really the intersection we sit in.”
“COVID has helped both providers and patients really focus on the need to think about what’s most important to them, where they want to get their medical care, and how,” said Dr. Kim Bower, of San Diego, Calif., medical director of the palliative care program at Blue Shield of California.
“I think it’s opened up discussions,” she said. “It’s been a reason for families to sit down and discuss priorities.”
The pandemic has also addressed barriers to telemedicine, and “really let us see what can we do effectively by video visit and what do we really need to do in the home to meet the patient’s needs,” Bower added.
Health Insurers and Hospitals See Value in Palliative Care
In 2019, 72% of U.S. hospitals with 50 or more beds reported having a palliative care team, according to CAPC. That was up from 67% in 2015, 53% in 2008, and just 7% in 2001. The number of palliative care programs in community settings is also rising, said Bowman.
Some health plans are being proactive about palliative care, sorting through records and identifying members who might benefit from palliative care, Bowman said.
“We’ve taken a multi-pronged approach” to reaching out to members, she explained. Physician and case manager referrals, along with research into medical records and discussions with providers, can identify those who might benefit, she said. Some may need something as simple as more time with a primary care provider or a telemedicine visit.
“I think about palliative care as a continuum, from the palliative care that can be provided by your primary care doctor to the type that can be provided by a specialist in your home,” Bower said. “The final part of that continuum would be hospice care.”
“COVID has helped both providers and patients really focus on the need to think about what’s most important to them, where they want to get their medical care, and how.”
“One of the gaps we have in the United States is, though we have a way to pay for hospice care, we don’t really have a great way to pay for palliative care providers” in a clinic or by telemedicine, Bower said.
The philosophy of palliative care — an interdisciplinary team taking care of the family as well as the patient — isn’t exactly matched with the existing reimbursement system, though that’s changing. “We’re starting to see a network of outpatient palliative care providers form,” Bower said. Still, “access is still spotty.”
Some 65% of Blue Shield members who take advantage of palliative care “discharge” from the home-based program after their symptoms stabilize or their needs are met, Bower said. They may still access services such as office-based palliative care visits, “but they don’t really continue to need that high-acuity palliative care.”
“I think it’s important for patients to be able to access palliative care across that continuum, whether that’s most appropriate in their primary care doctor’s office, a clinical setting, telehealth, or hospice,” Bower added.
The state’s passage of SB 1004, the law mandating coverage for Medicaid recipients, “was a huge win in terms of improving access,” Bower said. “I think having something like that nationally would be a great step forward for palliative care.”
Care for Caregivers and Families
Caregivers for people with serious diseases are themselves at risk for social isolation and exhaustion, and a palliative care team can connect them with community resources such as adult day care, according to Bowman. The team can also teach a caregiver about disease progression and how to manage pain and possibly avert a crisis.
For example, palliative care can provide immediate benefits such as alleviating symptoms so patients aren’t bedridden, said Esch.
“I could come up with about two-thousand and five hundred stories of patients who were in unmanaged pain,” he said. “You get that pain under control, it changes their life.”
As Esch sees it, one of the real values of palliative care is “coordinating care and communicating with the patient’s family and other clinicians” so “we’re not doing things in silos,” he said.
“Palliative care takes the lead and makes it so the patient feels they have four doctors and nurse practitioners taking care of them, and they have four of them talking to each other.”
Casual TikTok viewers might think of the app as just a feed of Gen Zers doing viral dances and lip-synch reenactments. But the social network has also provided a space for some unlikely influencers: hospice workers, morticians, and funeral directors. These content creators hope that their comedic takes on mortality will help people who find death hard to discuss, especially during the pandemic, in which more than 900,000 Americans have died. DeathTok, as it’s called, is a corner of the platform where skits about end-of-life care, funeral arrangements, and death-worker mishaps bring comfort to those suffering through grief and loss, and clarity to those who are curious about an oft-avoided topic.
Our inability to plainly discuss death and its circumstances stems, in part, from the American ethos of self-reliance, according to Cole Imperi, a well-known author and speaker on the subject of death and thanatology. “We value the story of somebody coming to the U.S with $5 in their pocket and they make it … needing nobody,” she told me over Zoom. The end of life, Imperi explained, sits in direct opposition to this philosophy: As people age and approach death, they rely on others for help. The fear of lost autonomy (be it one’s own or a relative’s) makes planning for, grieving, and processing death hard for many Americans. “We don’t have a lot of practice with knowing how to talk about something that’s painful, scary, or difficult all the way through,” Imperi said. She believes that the humor DeathTok offers can be a useful tool for pushing through this discomfort. “Having humor is critically important when it comes to death and dying,” she said. “Humor is necessary. Humor helps us heal.”
Although some find death-based comedy unpalatable, many TikTok viewers agree with Imperi’s estimation that the levity of a well-placed joke can sometimes make difficult situations easier. When I spoke with Penny Hawkins, a 59-year-old hospice quality-control manager from Washington, she explained how she uses comedy to educate others. “If you’re talking about a really heavy subject like death and you’re able to put kind of a funny spin on it, it makes it a little more palatable. It’s not quite so scary,” said Hawkins, who has more than 300,000 followers on her nurse_penny TikTok account. She encourages viewers to be curious about human anatomy by explaining what happens to failing bodies. For example, to tackle the misconception that hospice patients need to stay hydrated, Hawkins danced to the viral song “Just Water,” by the TikTokers Bryansanon and Tisakorean. To caption her video, she wrote: “If your dying person isn’t taking fluids, that’s ok. Their body is shutting down and doesn’t need it.” The chorus, which repeats the line “It’s just water!,” serves as a whimsical background to Hawkins’s blunt explanation.
Hawkins has also used macabre comedy to illuminate the realities of hospice care. In one video, about the use of morphine at the end of life, an exasperated Hawkins appeals to the camera and feigns anger at a family who wants to withhold morphine from a dying loved one out of fear that they’ll become addicted. “They’re suffering and they’re dying,” Hawkins’s caption reads. “Addiction is the least of their worries.” Hawkins told me hospice patients aren’t typically at risk of developing an addiction, because many of them are not in end-of-life care long enough to become addicted (for instance, the median length of stay for Medicare recipients in hospice is about 18 days). As uncomfortable and dark as the video may be, it underscores Hawkins’s overall message that learning more about dying bodies and end-of-life care can only help.
Beyond the medical aspects of death and dying, some videos also warn people about one of the largest hurdles after a loved one’s passing: logistics. Lauren Taylor, a 28-year-old former funeral director who lives in Florida, shares farcical family stories on TikTok—such as a quarrel between a mistress and a wife over the burial of a shared lover—to make the point that planning is key. “Being preplanned, having everything written down ahead of time, and letting others know what your wishes are is so important,” she told me over the phone. Taylor, who asked to use her maiden name to protect her family’s privacy, has more than 400,000 followers on her account, @lovee.miss.lauren, and said she has witnessed how traumatic unplanned funerals can be for families and wants to inspire forethought. “These comedic situations where you kind of wonder, Is this real? It happens more often than people think,” she said. “It can be comical to talk about after the fact, but when you’re living in the moment, it’s the most stressful thing ever.”
While DeathTok has been a useful tool for families navigating their relatives’ mortality, it’s also helped death workers themselves cope with the demands of their job. Julie McFadden, a 39-year-old hospice nurse in California, told me that of her close-to-700,000 followers, her fellow medics are the loudest voices in her comments section. “Any of my videos that are more dark, that could be slightly offensive to some, I’m always 100 percent supported by nurses,” she said. In one video, she recounts the time she noticed that a patient was dead even though the rest of their family did not (set to the audio of a person screaming “Don’t worry!” in a panicked tone). The clip spurred other nurses to share similar stories, and one thanked her for her “positive outlook” on such difficult situations. McFadden told me that though nurses are taught how to care for and save patients, many aren’t coached on how to handle death psychologically. “As a community, it’s nice to come together and make light of the things we know are messed up,” she said. “What else are we going to do if we don’t laugh about it?”
When death workers make these short, funny videos, they provide more than just comfort to their colleagues or the bereaved. Their TikToks can be soothing even for patients dealing with a terminal diagnosis. Val Currie, a 32-year-old undergoing treatment for Stage 3 recurrent metastatic cancer, told me that DeathTok provides a much-needed release, and has helped her have discussions with her partner about end-of-life care. “I’m learning to laugh at the process,” she said. If viewers can laugh at death, then they can talk about it. And if they can talk about it, healing may not be too far behind.
A combination of journalistic curiosity and advancing years prompts me to read obituaries regularly. I routinely check for ages and causes of death that can help inform what I write about and how I live.
Increasingly, I’ve noted in published reports that people are often said to die of “complications of” some disease, rather than the disease itself.
What, I wondered, does that mean? How is it recorded on death certificates? And does it result in accurate mortality statistics needed for assigning priorities for medical research and allocating resources?
I looked up the complications of Parkinson’s and Alzheimer’s diseases. Someone with Parkinson’s disease may have poor balance and die from a fall, for example, but Parkinson’s is actually the underlying cause of the death. Similarly, people with Alzheimer’s disease often have difficulty swallowing and may accidentally inhale food and develop a fatal pneumonia; such secondary infections are listed as the cause of death for as many as two-thirds of these patients.
The result can be seriously misleading information, said Dr. James Gill, the chief medical examiner for the state of Connecticut. While pneumonia may be the proximate cause of death, Alzheimer’s disease, which is why the patient developed pneumonia in the first place, is the “specific underlying cause that started the chain of events and should be listed as the cause of death,” he said.
In fact, one study from 2014 suggested that the real death rate from Alzheimer’s in 2010 may have been more about six times higher than the number of deaths reported to the Centers for Disease Control and Prevention. Likewise, if someone with Covid-19 develops pneumonia and dies, their death certificate might say that pneumonia was the cause of death, but in reality it was a coronavirus infection.
I asked Dr. Gill, who heads the College of American Pathologists Forensic Pathology Committee, why this matters. “In order to prevent deaths, we want to know what’s causing them, which influences medical practice and the awarding of research grants,” he said. “If many dementia deaths are hidden, the disease is not getting enough funding.”
More dramatically, Dr. Gill added, “Having accurate death certificates saves lives. It enables us to identify new and trending diseases and take appropriate action.” If someone is living or working in a building with a poorly installed or maintained furnace, for instance, they may be exposed to toxic levels of carbon monoxide that could eventually cause fatal cardiac and respiratory failure. The cause of death might be recorded as cardiac arrest, but in fact was a result of carbon monoxide poisoning, and the presence of the faulty appliance would likely be missed and could result in further casualties.
In a research review published in the magazine Today’s Geriatric Medicine, Dr. Emily Carter, a geriatrician affiliated with the Maine Medical Center, and co-authors noted that the data submitted on death certificates can affect families with regard to life insurance, estate settlement, genetic risk factors and finding closure. They estimate that major errors, like incorrect cause or manner of death, occur in 33 to 40 percent of death certificates that are completed at academic institutions like their own in the United States.
An analysis of death certificates at their own institution found that cardiac or respiratory arrest were incorrectly entered as the immediate cause of death on 11 of the 50 documents they reviewed. As Dr. Gill said, “Everyone who dies, dies of cardiopulmonary arrest. The critical question is: Why did this happen? Let’s say someone dies of a stomach hemorrhage. What caused it? Stomach cancer, an ulcer or what?”
There are many reasons for the high rate of inaccurate or incomplete death certificates, starting with the meager attention paid to the subject in medical school and the hectic pace in many medical settings. Speed is sometimes dictated by the need to release a body to a funeral home for burial or cremation.
The C.D.C. has estimated that 20 to 30 percent of death certificates, though not necessarily inaccurate, “have issues with completeness.” The agency stated that heavy workloads, insufficient information about a death or inadequate training can result in death certificates that are incomplete or inaccurate.
Furthermore, many deaths are certified by coroners, who are elected or appointed to their positions and may have bachelor’s degrees in forensic science, but are usually not doctors. They can be subject to political or family influence and may fail, for example, to list opioid overdose as a cause of death. Even when death certificates are completed by medical examiners, who are usually doctors, they may not be trained in forensic pathology and could miss the real cause of death. A death following a fall, for example, might have been accidental, or it could have resulted from an underlying disease or even homicide.
According to a blog post from Womble Bond Dickinson, a trans-Atlantic law firm with headquarters in London, “the death certificate may be critical in a lawsuit” to help determine “the nature of the death,” factors that contributed to it, when it occurred and illnesses that may have played a role.
If the death was the result of a medical illness, the death certificate is usually completed by the physician in charge, Dr. Carter and her colleagues wrote in their review. However, they emphasized, a medical examiner should certify all other causes, including deaths related to hip fracture which could have resulted from an accident, and deaths related to a history of malicious injury that could be a homicide.
Unfortunately, despite what you may see in films and on TV, autopsies today are performed less and less often. Families often have to pay for them out of pocket. Between the high cost of autopsies and the increasingly limited resources to do them, they have become a dying breed.
Families can often benefit from knowing the real cause of a relative’s or housemate’s death. Might there be a payout from life insurance? Is there a home problem, like a slippery floor, lack of grab bars in the bathroom or a faulty furnace, that needs correction? Is there an inherited medical condition that can be mitigated to avert further casualties? Could malpractice have caused or contributed to the death?
If a death certificate contains errors that warrant correction, the sooner that’s done the better. In New York State, the funeral firm or medical certifier can usually help with a correction request that’s made within six months of the death. Beyond six months, you would have to fill out an application for a correction.
These portable medical orders give the seriously ill more control over their care
by Larry Beresford
Blake Anderson, 64, lives with numerous medical conditions, including chronic back pain, the rheumatic disease ankylosing spondylitis, other autoimmune conditions affecting his tendons and nerves, and non-Hodgkin lymphoma, a lymphatic cancer. But although he is disabled and in pain, he says he deeply values life and has no wish to end his.
Residing in a board-and-care facility in Carlsbad, California, he has good friends and enjoys reading, conversation, learning new things and traveling the world via the Internet. But he also has a POLST form, signed by his doctor, spelling out the treatments he would not want to receive in the event of a medical crisis in which he could no longer speak for himself. Were his heart to stop beating, he would not want medical personnel to try to resuscitate him.
POLST is a medical form completed by a doctor, nurse practitioner or physician assistant in consultation with the patient. It allows people with serious or chronic illnesses or the frailties of age to spell out what kinds of medical care they would want to be given in potential future medical emergencies.
Unlike legal documents such as the more familiar living will or other advance directives, which can be completed by those in good health, POLST is for when a serious diagnosis is known to the patient. It is more likely to be recognized, read and honored by emergency responders who show up for that potential emergency, such as a heart attack, when someone calls 911.
And, POLST advocates say, it’s not just about saying no to interventions such as cardiopulmonary resuscitation (CPR). Some POLST documents may detail that the person does not want to go back to the hospital or be put on a ventilator. Other orders might note a trial period to see whether aggressive treatments would be successful. But patients can express their treatment preferences, including for doctors to “do everything” medically feasible to keep them alive, if that is what they wish. Ideally, the POLST form signed by the doctor is copied to the patient’s electronic health record and given to close family members and the patient’s named surrogate decision maker for health care decisions.
Bright pink (or green) forms
Anderson’s doctor, Karl Steinberg, M.D., a geriatrician and hospice/palliative medicine physician in Oceanside, California, who makes home visits for Scripps Health, visited him at home to talk about POLST. “When he found out that I would not want to be resuscitated, Dr. Steinberg told me about the bright pink form I could fill out and put up on my wall where it could clearly be seen,” Anderson says. “I didn’t know there was such a form until Dr. Steinberg told me. It took some worry out of [the medical situation] for me.”
Anderson says he feels he is doing well, all things considered. “I know there’s no cure for any of my diagnoses.” Were he to die of a sudden heart attack, he says, he would want to be left in peace. “In fact, I’d call POLST the ‘rest in peace’ form.”
Steinberg told Anderson that discussing goals for medical care is a routine part of his visits with older patients. “I’m a big proponent of POLST in my practice,” he says. But patients shouldn’t be shy about bringing it up to their doctors or talking about it with their families. CPR is not what it looks like on TV, Steinberg adds. “Most people with serious illness don’t survive even the initial procedure, much less get back to a condition of full, active life.” One analysis of over 433,000 Medicare beneficiaries 65 or older who underwent CPR in U.S. hospitals found the chances of surviving and being discharged were about 18 percent.
Honoring patients’ preferences
Devised in Oregon in the early 1990s by medical ethicists and clinicians who had discovered that patients’ preferences for care at the end of life were not being consistently honored, the typically brightly colored, letter-sized POLST form has since spread to most states (and to locations in more than 20 countries) in a variety of versions and names and stages of development.
It has become mainstream, at least among health professionals. The original name, “physician orders for life-sustaining treatment,” is sometimes replaced by “portable medical orders” or simply “POLST.” The National POLST office, which is leading efforts to standardize its dissemination and promote recommended national language for the states to follow, calls POLST a process and a conversation as well as a form.
POLST has a specific place in medical planning, adds Judy Thomas, CEO of the Coalition for Compassionate Care of California (CCCC), the home for implementing POLST in California. In recent years CCCC has worked to standardize POLST statewide, she says. “We also got it established in statute, which has helped to make health care providers more comfortable with it, knowing they were complying with the law.”
CCCC has also developed training for health care providers on how to have conversations about POLST with consumers and taught hundreds of people to go out and train others. POLST is becoming better known, and more people have seen it used for a loved one, Thomas says. California’s 2021–2022 budget included funds to develop a statewide electronic registry of POLST forms.
In Oregon, with its three decades of experience with POLST, nearly half the people who die of natural causes have a POLST form in that state’s electronic registry, password-protected and accessible to EMS personnel and emergency care physicians, says Susan W. Tolle, M.D., a professor of medicine and director of the Center for Ethics at Oregon Health & Science University in Portland.
“If we could encourage people to take a deep breath and step forward and say, ‘I really want to talk about this,’ it could trigger conversations in their families. COVID is one more reason why we need to talk about it now,” she says.
“It is a true gift if you can engage in advance care planning, which would help your loved ones feel they know what you would want in a crisis and that they are doing what you would have wanted,” Tolle explains. “They won’t have to wake up at 2 a.m. and wonder if they did the right thing.”
