— How our life ends isn’t always up to us, but that question too often must be answered by loved ones and health care workers who don’t know what we would want.
His name was Bob. He was 82. The way he decided to die should speak volumes about the way the rest of us can choose to live.
For many years, Bob had suffered from a serious chronic heart condition. With Bob’s health woes mounting — and his quality of life suffering — a team of surgeons and nurses prepared in a hospital to do exactly what our medical system is programmed to view as the next step: open-heart surgery.
So Bob decided to take the biggest chance of all. He said, Stop. Let’s pause for a moment. Let’s talk about what we’re about to do here and, especially, about who wants to do it and why.
He met with his daughter and son, and together the family decided that a major operation on an 82-year-old man with a chronic cardiac problem just didn’t make sense for his own values or life. He didn’t want his last breath to be in a hospital surrounded by strangers. He canceled the surgery, returned home, received palliative and hospice care and died in peace in his own bed surrounded by loved ones.
Engaging empathy and humanity
Our health care system is set up to engineer medical miracles. We have the doctors with the skills, the hospitals with the equipment and the biomedical engineers with the technology. Too often, what we lack, though, is the crucial pause to engage our empathy and humanity.
As a critical care nurse and CEO of a complete senior health company, I have seen too many seniors traumatize themselves — and their loved ones — by delaying any talk about death. That’s why I found inspiration in Bob, his family and their difficult personal choice.
How do we want our life to end? It’s not always up to us, but too often that question must be answered with a hunch or a guess by our loved ones and our health care workers.
Fewer than half of all Americans over 50 years old have recorded their medical preferences for the end of life, according to a poll by AARP and the University of Michigan. Why? Of the people without any medical directive document, 62% said they had not gotten around to it, 15% did not know how, 13% said they do not like talking about death, 13% did not think it was necessary, 9% said no one asked them to, and 7% were deterred by cost.
The financial consequences of death go unplanned, too. More than half of Americans don’t have a will, Gallup found, and the avoidance even extends to those with the most to lose: One in five Americans with investable assets of $1 million or more have no will, according to the Wall Street Journal, citing a Charles Schwab survey.
Avoiding the gut-wrenching choices
Nobody enjoys talking about death, but ducking the subject just saddles everyone else with gut-wrenching choices. Is it really fair to make your spouse or kids wring their hands over the decision to put you on a feeding tube, or a ventilator, or dialysis? After a certain age, or after certain prior health conditions, should you be resuscitated after a major stroke, heart attack or seizure? What if dementia strips away your ability — or your spouse’s ability — to make key life-or-death decisions?
In a medical emergency, the reality is that health care professionals will begin life support immediately unless there is a clear directive saying you don’t want it.
That will be the preferred decision for many Americans with personal or religious reasons to always extend life. A Kaiser Family Foundation/The Economist poll shows, however, that only 19% of Americans believe the top priority for end-of-life care is preventing death and extending life as long as possible. A far greater majority, or 71%, says it’s more important to help people die without pain, discomfort or stress.
When asked to list the leading preferences for their own deaths, the top priority, listed by 87% of respondents, was to make sure their family was not burdened financially by their care. The least important priority was to live as long as possible.
For people who want a good death more than a prolonged death, the U.S. has excellent palliative care and hospice care. Death can come with more compassion than pain, in your home instead of a hospital, surrounded by loved ones who know your hopes instead of medical professionals who can only guess.
What you can do
Try putting yourself in the shoes of your family, friends and doctors. What should they know about your last wishes if you are too incapacitated to tell them?
The best solution is to write a legally enforceable will that has clear medical directions and responsibilities. Many states allow you to download online advanced care directives. Work with a lawyer and consult your primary care providers for guidance.
You owe the key people around you an indisputable written record or personal video interview spelling out what should and should not be done at the end of your life.
Bob was brave enough to be clear about his final wishes with his family. We should be brave enough to follow his example.
These were the words the doctor used to explain that my husband, Nigel, had three to five years to live, and I felt numb.
Moments like this are not at all what you imagine.
There’s no darkening sky, no rumble of thunder. Your heart doesn’t miss a beat and the world doesn’t hold its breath. Everything remains the same.
And yet, for us, nothing would ever be the same again.
The first sign that something was wrong with Nigel came in the summer of 2006 when I noticed the gradual deterioration and slurring of his speech.
‘My tongue feels like it doesn’t belong to me,’ he said, nonchalantly, to me one morning. ‘One minute it’s twisting all over the place, the next it’s as heavy as a brick.’
He carried on about his business – washing his clubs before heading out to play a round of golf with his brother – as if this admission was the most normal thing in the world. But the words stuck with me. I was concerned.
To put my mind at ease, we spoke to our GP who, at our request, then referred us to a speech therapist.
She immediately recognised Nigel’s speech problems as dysarthria, a condition where you have difficulty speaking because the muscles you use for speech are weak – but she didn’t know the cause.
A quick Google search will tell you that dysarthria can be caused by conditions that damage your brain or nerves and, to be safe, she advised us to see a neurologist to find out. We did and were told to prepare for a barrage of tests.
Nigel endured blood tests, MRI scans and an electromyography (EMG) test that detects neuromuscular abnormalities, all so that we could eliminate other diseases and find out exactly what was going on.
‘It’s like a liner on the horizon,’ advised the doctor. ‘Not until it gets closer can we be sure what it is.’
MND is a distressing, debilitating disease that ultimately robs its victims of the ability to move, speak, eat and breathe.
The night he was diagnosed, as we researched MND on the internet, Nigel found a documentary about a man with MND who had gone to Dignitas – a Zurich-based nonprofit that provides physician-assisted suicide to members with terminal, severe physical or mental illnesses.
‘Poor man,’ I said, but Nigel thought differently. ‘Not a bad way to go,’ he said.
At the time, I thought it was a throwaway comment. Besides, we had treatment and life to get on with, so we never mentioned Dignitas again.
In the years that followed, this degenerative disease slowly and savagely destroyed Nigel’s body.
First his speech was affected, then slowly his legs followed. He went from using a cane to a walker, then eventually a wheelchair. The strength in his neck also went and he needed a neck brace to sit up straight.
Around six years in, he lost strength in his arms. My strong, physically active husband – who, as a scaffolder, once thought nothing of carrying two, 13 inch boards on a single shoulder – could now barely lift his toothbrush towards him.
Our lives were totally transformed by his diagnosis.
We went from being very busy and sociable people to being dominated by procedure in caring.
I cared for Nigel alone for as long as I could, aided by our daughter Ellie, who gave up her job to help us both, but we gradually needed more support.
Towards the end, Nigel had limited movement in his hands and arms and could do nothing for himself. Our home became a private hospital ward and we had a team of carers covering 24 hours a day.
Yet throughout, not once did Nigel bemoan his fate. Nigel, the man, remained inside that ravaged body: gregarious, funny and always joking.
Julie with husband Nigel
In 2009, he took part in a medical trial that was searching for a cure for MND. While we were in the hospital he saw a filing cabinet labelled ‘deceased.’ He laughed and said, ‘There’ll be a slot in there for me soon.’
Sadly, ‘soon’ came a lot quicker than any of us would have liked.
Nigel’s MND had always followed a pattern of plateaus and pits. Sometimes the plateaus went on for months and we would get used to managing his disability. But then he would have a period where his disabilities would get much worse, and he would be much weaker as a result.
And, in August 2016, he suffered a particularly bad episode.
He felt that the disease was starting to attack his spirit and sense of self; that he was disappearing.
Adamant that it would not rob him of his humour and personality, he decided to take control.
‘I’ve found the “cure”,’ he announced the following September. I held my breath as he explained. ‘I’m going to Dignitas. I want to die while I am happy and can still smile.’
I wanted to protest but Nigel knew his death would be slow. That when his astute, tortured mind became entombed in a silenced, paralysed body, he would be both alive, and dead.
Nigel and Julie in happier times
‘I could be buried alive for years, unable to drag a scream from my throat,’ he said. And I knew I couldn’t deny him this final wish.
From that moment on the mission was underway. Nigel opened communication with Dignitas, we told immediate family, close friends and his doctors the news.
Plans were carried out in secret. Applying to die at Dignitas is a bureaucratic minefield and there are several prerequisites – including the need for unassailable judgement and sufficient physical mobility to administer the lethal drug yourself. This is not to mention the mountain of medical reports we had to send off.
Six weeks later, the letter granting Nigel the ‘provisional green light’ arrived. He was elated. He had his ‘cure’ and his dying day was determined.
On our last Christmas Day together, in December 2016, when all the family were gathered, he was in charge of music – he had an extensive playlist on his iPad – and he played the first two words of George Michael’s Last Christmas.
He stopped the music. Then played the two words, ‘Last Christmas…’ again. Then stopped it, and played them again. He thought it was incredibly funny.
That was Nigel.
Nigel gradually lost the use of his legs
The only way to transport a severely disabled man from Scarborough to Zurich was by road. And after a lot of searching, we managed to hire a fully adapted motorhome which we christened ‘Mabel’.
My son-in-law then drove me, Nigel and our three children, Craig, Ellie and Becky, for 24 hours non-stop, and we arrived at Dignitas on the morning of April 25, 2017.
I’m not sure what I expected – a hospital, perhaps? – but it all looked very ordinary.
From the outside it seemed nothing more than a small, blue cladded house in the middle of an industrial estate, with a Lidl supermarket on the corner. And inside, the rooms were basic, with nothing more than a sofa, an electronic, adjustable bed, dining table and chairs and kitchen on offer. But then, I suppose, no one ever stays for too long.
Ahead of the procedure, Nigel had two meetings with a doctor affiliated with Dignitas who would determine whether his wish for accompanied suicide was granted. They needed to officially determine that there had been no coercion, that he was of sound mind and really understood what would happen if they proceeded.
Nigel knew of course, and was determined as ever. So his wish was granted.
We had two escorts who were both very nice, calming and welcoming, and carefully explained what would happen next.
Nigel and Julie had a loving, close-knit family
‘Are you sure you want to do this, Nigel?’ said one of them. ‘Definitely,’ he replied.
Nigel signed the papers and then my three children and I said our final, agonising, tearful goodbyes.
Craig went first. He collapsed into Nigel’s embrace before saying, ‘You’ll always be my hero, Dad.’
Ellie followed close behind with tears pooling in her eyes. She kissed him on the cheek and said: ‘I’ll miss you, Dad. You were always there for me, and in my head and my heart, you always will be.’
Becky was up last and after smothering her tears by burying her face in his neck she rested her palm against his cheek and said: ‘You can stop pedalling now.’
She was rewarded with the sunniest of smiles and an extra hug. ‘Thank you, Becky. I will. But you can’t.’
Finally it was my turn. Nigel held out his hand for me and I couldn’t help but peer into those fathomless pools. I knew in that moment I would never again see or feel, for as long as I lived, such overwhelming and unconditional love.
‘It’s been a joy to be your husband, Julie. You’ve made me very happy,’ Nigel said.
‘You’ve made me happy too. I’ll miss you, darling.’ I brushed my lips with his and dropped a kiss on each eyelid. ‘I love you, Nig.’
Nigel and his family
With one final sigh he turned to us and said, ‘I’m ready’.
After that, my children and I could do nothing but stare as the contraption pushed the barbiturate into Nigel’s body. Once the syringe had emptied, we rushed to enfold him in our arms.
We embraced him as he slipped into unconsciousness. I cradled him as his body slumped. We clung to him as the sporadic rasp of his breathing faded to a muted hush and the soft whisper of his breath was no more.
The only man I will ever love was dead.
Having to tear ourselves away from his body, to leave him there with strangers, was utterly devastating. But part of the paperwork Nigel signed gives Dignitas the power of attorney and enables them to organise the cremation, acquire a death certificate and inform all appropriate authorities.
That meant Nigel would be cremated without a single mourner. Nobody would place a hand upon his coffin and bow their head in sorrow. Nobody would shed a tear for his loss and there would be no kind words to mark the life of this brave, funny, exceptional man.
Even if we’d wanted to do something, Dignitas advises against repatriation of the body as, apart from it being very complicated, it would likely trigger a police investigation into his death.
Instead, we paid Dignitas to arrange for his ashes to be flown to Heathrow where a funeral director would collect the urn and bring it home. His ashes arrived home about three weeks later.
Nigel has been gone seven years now, but it still doesn’t feel real. We are a close, supportive family and help each other through, and it does help knowing that this is exactly what Nigel wanted. That he could die smiling and with dignity gives us comfort.
No dying person should have to endure the journey he did – especially when you consider that Nigel had to do it while he still could and therefore definitely died sooner than he needed to. We could have had another six months, even a year.
And no family should have to face the torture of walking away from their loved one’s body. For us, that will alway be the hardest part.
Giving a terminally ill person control and choice over how they die transforms the remainder of their lives and enhances the quality and pleasure of their remaining days immeasurably.
I cannot believe that it is beyond the wit of any British Parliament to devise a law that not only protects vulnerable people, but protects dying people and gives them control, choice and dignity in their dying.
The sudden death of our friend and Take Control author Charles Edge emphasized how terrible things can happen to anyone at any time (see “Take Control Author Charles Edge Dies,” 22 April 2024). Those later on in life are usually more aware of their mortality and plan for it, but for younger people, it’s hard to contemplate the possibility of incapacitation or death, whether due to an accident or just bad luck.
I don’t know what Charles may or may not have done in this regard, although he wrote about the topic three days before he died from a cerebral aneurysm. Since then, Tonya and I have been thinking more about what would happen if one of us were to be incapacitated or die. We both know a lot about the other’s digital setup, but is it enough? We’ve come up with a list of items that we need to share with the other so they could take over, and we hope it’s useful for you, too.
The most comprehensive reference for this sort of planning is Joe Kissell’s ebook, Take Control of Your Digital Legacy. He wrote the first edition back in 2017 when we were still running Take Control, and he published a second edition in February 2024 that brings it up to date in myriad ways. If you want to do more than the basics—and I highly recommend that you do—read Take Control of Your Digital Legacy and put thought into the many aspects of your digital life that go beyond just allowing your spouse, partner, or child to get through the early days of not having you around.
Identify Your Trusted People
First, figure out who will need to take the reins when you’re incapacitated or dead—I’ll refer to that person as your steward. For those in a couple, one member will likely take the role of steward for the other, but if both die, there needs to be a backup.
You may also need other people in various roles: a healthcare proxy, someone with power of attorney, the executor of your will, the guardian of your minor children, or a trustee. I’m far from an expert on this topic (we’re about to update our woefully outdated will from 22 years ago), so get advice from a lawyer or estate planning professional.
Whoever you choose, talk to these people soon to make sure they’re willing to help and know what’s involved. Such discussions can be tremendously difficult, but just think how much more difficult it will be for them if they’re thrust into such a position without having had the talk. That’s doubly true if your preferred steward isn’t all that technically adept.
Create Digital Legacy Information
If you’re incapacitated or dead, your steward will need to work with healthcare professionals, organizations with which you do business, government agencies, and much more. To ease that process, I recommend building a set of digital legacy information they can turn to whenever some question or problem arises. For instance, they might need to share your health insurance information if you’re admitted to a hospital, notify family members they’ve never met, pay your mortgage, and more. From what I’ve heard from those who have gone through this, there’s always more.
Here are some items that I encourage you to assemble and ensure that your steward can access in the event of an emergency:
Login passwords/passcodes: It’s essential that your steward be able to get into your Mac, iPhone, and iPad to access other information, so make sure that they either know your login passwords and passcodes or can look them up in a secure location. Don’t assume that Face ID or Touch ID is sufficient—devices with biometric authentication still require their password or passcode regularly.
Password manager: I can’t emphasize strongly enough how important it is that you use a password manager for all your online accounts. By collecting everything in one place, a single master password gives your steward instant access. Although password-sharing setups like 1Password for Families and Apple’s Shared Family Group work well for everyday use, sharing the master password ensures your steward can access accounts that may not be shared.
Medical information: Your steward will likely need your health insurance information if you’re admitted to a hospital in an emergency situation. A short list of current medications, allergies, and surgical histories may also be helpful, especially if you have severe allergies to common medications or must take certain medications regularly.
Estate planning documents: An estate planning professional should help here, but your steward will likely need to access documents that specify your healthcare directives and power of attorney, along with your will, guardianship documents, trusts, and so on. Make sure to communicate the location—online or offline—of those documents.
Communication plan: A stressful aspect of someone dying is communicating their passing to family, friends, and community members. Develop a list of people who should be contacted quickly. They can then be asked to spread the word further to your relatives, employer or clients, friends, and community groups.
Financial affairs: Create a document that lists your bank accounts, investment accounts and assets, and insurance policies. For each, include an account number if appropriate, and either a link to the website (the login credentials should be in your password manager) or a description of the location of physical documents (“the bottom drawer of the wooden filing cabinet, in an Insurance Policies folder”). Add any notes that might help your steward, such as contact information for accountants or lawyers.
How to be me: Joe Kissell suggests this item in Take Control of Your Digital Legacy, and I think it’s brilliant. The goal is to create a document that briefly explains what you do—think of it as training someone to take over from you. It could include regular tasks, details about home or car maintenance, important financial tasks like paying property taxes, and notes on how to deal with your technology. If you are your household’s IT person, tech notes may need to include how the network is set up, how the home automation system works, how backups work, and how to reboot the router. Generating such a document from scratch might be challenging, but if you start one now and add tasks as you perform or remember them, it will become a valuable resource over time. You may want to organize it chronologically, listing key actions for each month.
One final note. Apple’s Legacy Contact system for sharing Apple data in the event of your death is worth setting up because it ensures your account won’t be deleted for 3 years, but as long as you trust your steward sufficiently, providing full access gives more flexibility. Google provides an Inactive Account Manager you can configure to share select data with specific people if your account goes inactive, but that will take at least three months.
Other Decisions to Consider
My goal so far has been to lay out the information your steward will need to take care of you and manage your affairs in the immediate aftermath of your being incapacitated or dying. As horrible and stressful as that will be (but less so if you’ve left them good information), there’s vastly more work that comes from winding down your life. You can make it easier for them by thinking ahead and documenting your wishes in these areas:
Email: How do you want your steward to respond to incoming email messages from individuals, businesses, and mailing lists? What should happen to all your saved email in the long run?
Chat: How should your steward respond to incoming chats in Messages, WhatsApp, Facebook Messenger, and so on?
Social media: If you use social media, it’s a good idea to instruct your steward to post a final farewell so anyone looking you up will know what happened. Consider it an opportunity to have the last word. Some social media services allow accounts to be archived so they remain online but limit access, so if that’s desirable, let your steward know. Or just have them delete your accounts.
Photos and videos: Dealing with thousands—or tens of thousands—of photos and videos is going to be a ton of work for your family. If you have the time, create albums of photos and videos you’d like to share with specific family members.
Other data: It’s hard to know what additional documents you might have or what you want to have happen to them. If you have data that should be shared, be sure to leave some high-level instructions about what it is, where on your drive it can be found, and who should get it.
Again, this article is far from comprehensive—my goal is to help you start thinking about these issues. Take Control of Your Digital Legacy addresses additional topics and provides a great deal more advice. I also encourage those of you who have had to serve as stewards for a family member to share anything you learned from your experiences in the comments.
— An end-of-life care specialist reflects on how Medicare’s regulations for enrolling in hospice exclude many dementia patients who need it the most
by Maria Silveira, M.D., M.P.H., FAAHPM
Jimmy Carter, who chose to forgo aggressive medical care for complications of cancer and frailty in February 2023, recently reached his one-year anniversary since enrolling in hospice care. During this time, he celebrated his 99th birthday, received tributes far and wide and stood by the side of his beloved wife, Rosalynn, who died in November 2023.
Hospice brings a multidisciplinary team of providers to wherever a patient lives, be it their own home or a nursing home, to maintain their physical and psychological comfort so that they can avoid the hospital as they approach the end of life.
Hospice is not the same as palliative care, which is a multidisciplinary team that sees seriously ill patients in a clinic or hospital to help them and their families with symptoms, distress and advance care planning.
In my experience caring for dementia patients, the underuse of hospice by dementia patients has more to do with how hospice is structured and paid for in the U.S. than it does patient preference or differences between cancer and dementia.
Rosalynn and Jimmy Carter campaign for the presidency in 1976.
The role of Medicare
In the U.S., most hospice stays are paid for by Medicare, which dictates what hospices look like, who qualifies for hospice and what services hospices provide. Medicare’s rules and regulations make it hard for dementia patients to qualify for hospice when they and their families need support the most – long before death.
Medicare began assessing the potential benefits of covering hospice care during Carter’s administration. The service gained popularity after Congress formalized a payment structure to reimburse hospice providers through Medicare in 1985.
At the time, lawmakers were responding to the realization that the cost of care at the end of life was the fastest-growing segment of Medicare’s budget. Most of those expenses covered costs for hospitalized patients with advanced incurable illnesses who died in the hospital after spending time in intensive care units.
Congress believed hospice would not only give seriously ill Americans an alternative to a medicalized death but would also help control costs. So it required hospices to provide holistic care to entice people to enroll in this new option.
The new Medicare coverage allowed hospice care to follow the patient wherever they lived, at home or in a nursing home. It would support families as well as patients.
These remain among hospices’ core values to this day.
A hospice nurse discusses how end-of-life care can become a life-affirming experience.
Impossible trade-off
In exchange, people enrolling in hospice would have to forgo other kinds of care, such as seeing specialists or being admitted to a hospital.
But letting go of specialists is a nonstarter for many patients.
Researchers have found that people with life-limiting illnesses like dementia are half as likely to enroll in hospice when they want to continue treatments they cannot receive in hospice.
Psychiatrists and geriatricians who treat dementia, and the psychologists, nurses, social workers and others who support them, are invaluable to families struggling to manage a dementia patient’s disruptive and sometimes violent behavior. They adjust and rotate medications such as antidepressants, antipsychotics, anti-epileptics or sedatives to help their loved one experience less anxiety, agitation or depression as their memory fades.
These adjustments are the norm for many patients with dementia who are particularly prone to side effects such as agitation or drowsiness. Specialized dementia teams are difficult to give up in exchange for hospice clinicians who are generalists following a protocol and adhering to a short list of approved medications.
But that is what Medicare currently asks these families to do.
The best of both
Hospice advocates and palliative care providers like myself believe dementia patients should have access to both specialists to provide expert guidance and hospice providers to support the care at home.
Even when dementia patients and their families are willing to forgo specialists and hospitalization, they are unlikely to meet Medicare’s stringent criteria for hospice, which were designed to limit hospice to patients who are expected to die within six months.
It’s so difficult to qualify for hospice under a dementia diagnosis that one of my colleagues is known for saying, “If you want to get a dementia patient into hospice, find a cancer.”
Medicare’s criteria require that people with dementia not only depend upon others for help with toileting, transferring, bathing, walking and personal hygiene but also that they be bedridden, incontinent, minimally verbal and have a terminal complication of dementia such as aspiration pneumonia, recurrent urinary tract infections, significant weight loss, or bed sores.
More importantly, Medicare’s hospice benefits do not provide patients with dementia and their families the support they need most – hands-on care.
Most people are shocked to hear that, aside from providing a bath aide a couple of times a week and a home health aide for brief periods to give a family caregiver a break, hospice does not provide the hands-on care that dementia patients – and, frankly, anyone who is in hospice – requires.
Monitoring, toileting, hand-feeding, repositioning, ambulating, medication administration and wound care are left up to family caregivers.
Families of people with dementia must either sacrifice their personal well-being and livelihoods to care for a loved one at home, hire a professional home health aide, which costs from US$30 to $50 an hour, or place the loved one in a nursing home. The latter is paid out of pocket unless patients qualify for Medicaid. And hospice care, as currently structured, does nothing to help with that.
My heart breaks for people like the patient with early dementia I met recently. His daughter-in-law – his sole caregiver – requested he be enrolled in home hospice, only to find out that not only did he not qualify for hospice, but that hospice would not provide the hands-on support they needed.
“So, unless we can afford to pay for an aide or place him in memory care, I’m all the hands-on help he’s got?,” she asked. “I’m afraid so,” I answered.
Given this impossible choice, it’s no surprise that Rosalynn Carter only entered hospice near the end of her life.
— Psychologists, counselors and other experts share the titles they recommend most.
By Hope Reese
Joanna Luttrell is well acquainted with grief. The bereavement coordinator supports families that are navigating a child’s terminal illness at St. Jude’s Children’s Hospital in Memphis.
From the moment they receive a diagnosis until a year after the loss, “I send letters, resources, emails,” Ms. Luttrell said, so that families know they have support. A big part of the process, she added, involves sharing books.
If there’s a “challenging relationship or situation, I might send out a book right away,” she said. “If they’re looking to process their experience, and their emotional response to their experience, I will send one a bit later.”
While grief is universal, it’s complicated and highly individualized, Ms. Luttrell said. Reading books can provide perspective and help mourners feel less alone, she has found.
We asked Ms. Luttrell, as well as counselors, psychologists and other experts on loss, to recommend the most helpful books about grief.
Among the experts we spoke to, nearly all cited Alan Wolfelt, the founder of the Center for Loss and Life Transition, as their No. 1 author on grief.
In this book, first published in 1992, Dr. Wolfelt offers concrete steps toward healing. He helps people who have just lost someone and are having trouble thinking straight understand that “there’s nothing wrong with them,” said Audri Beugelsdijk, vice president of survivor services at the Tragedy Assistance Program for Survivors.
Dr. Wolfelt’s presentation of the material is “comprehensive, easy to read, and accessible to the general audience,” Ms. Luttrell said. “It’s easy to get overwhelmed when you are already emotionally challenged. So reading a little bit at a time can be very helpful as you work through your grief.”
In this accessible book, published in 2018, Megan Devine, a therapist and bereaved partner, offers stories, research and advice to people who are navigating grief, as well as those who support them.
She also unpacks the myth that we need to “fix” grief, said Andy McNiel, senior adviser of youth programs at Tragedy Assistance Program for Survivors. “In our society, we’re very one-dimensional in the way we talk about our experiences,” he said. “You’re either OK or you’re not OK. And the reality is, you can be OK and not OK at the same time.”
When the psychiatrist Viktor Frankl was imprisoned in Nazi death camps during World War II, he made a conscious effort to survive by observing, taking notes and reflecting on his higher purpose. In 1946, he published these reflections on survival in “Man’s Search for Meaning.”
This book is “truly a classic,” said Dr. David Spiegel, a medical director at the Center for Integrative Medicine at Stanford University School of Medicine. “Frankl reminds us that when we cannot change our situation, our choices still matter.”
Rob Delaney’s son was diagnosed with a brain tumor as a 1-year-old and died two and a half years later. In this 2022 title, Mr. Delaney, a comedian known for his role on the Amazon Prime series “Catastrophe,” explores the full range of his emotional journey during these years and in the aftermath of the loss.
Ms. Luttrell recommends the book often to grieving families because “it’s hard to find good books from a father’s perspective,” she said. “If you’re working with a profoundly grieving father, or a man who just lost his wife, or just wants to talk to another man, having that male perspective is really, really helpful,” she said.
In the summer of 2020, Chimamanda Ngozi Adichie’s father died. Less than a year later, the acclaimed novelist published this memoir, sharing her personal experience of grief.
“This book is relatable to readers who are in the depths of grief, who are trying to process their own feelings and their embodied experiences around the loss of a loved one,” said Michelle Peterie, a sociologist and researcher at the University of Sydney.
Ms. Adichie conveys that “grief is a physical experience as much as it is just an emotional experience,” Dr. Peterie said. “Adichie talks about pounding the floor with her fists and about her heart beating so fast and seeming like it’s going to run away from her. ”
“We experience grief in our bodies,” she said, “and Adichie does a really good job of capturing that.”
This 2005 title, from one of America’s most renowned writers is “a window into what living with grief day in, day out, is really like,” said Amber Jeffrey, host of “The Grief Gang” podcast.
“It’s really hard to quantify that first year — couple of years — after a loss, to explain the kind of delusional thoughts you have without sounding completely mad,” she said. “This book does that.”
“The Year of Magical Thinking” also helped Ms. Beugelsdijk, who now works with the families of veterans, through her own personal loss. “My version of magical thinking is that my husband is still on deployment. He’s going to come back and I’m going to be OK.”
The book also challenges the notion that the first year after a death is the hardest, Mr. McNiel said. “In reality, in the first year, there’s a lot of unknowns and sometimes just denial and struggle,” he said. “The second year sets in, and many people say that that’s when their grief is the most intense.”
7. Sad Book, by Michael Rosen, illustrated by Quentin Blake
When Michael Rosen’s 18-year-old son, Eddie, died of meningitis, he teamed up with Quentin Blake, an illustrator most known for his work with Roald Dahl, to create a picture book called the “Sad Book.” The book, published in 2004, can be illuminating for both children and adults who are grieving a loved one.
“There’s something about grief that’s really hard to articulate,” Dr. Peterie said. This book “captures something really fundamental about grief as a lived and felt experience, because it’s not purely dependent on words.” The medium allows grieving people to “have part of their experience echoed back to them,” she said.
Carla Thompson has worked in hospice care for more than two decades, and she knows first-hand just how difficult it can be to make end-of-life decisions.
“You can’t always see the future,” says Thompson, a registered nurse and administrative director for Bon Secours Home Health & Hospice. “When you’re given a diagnosis, you have all these treatment options in front of you. You have to make decisions to keep trying to cure the disease or choose to live with it, focusing on comfort and spending time with family.”
Thompson’s daughter Jessica died last year in hospice services at the age of 31. She fought fiercely for years, but when her breast cancer came back despite aggressive treatment, the family knew it was time to enlist hospice care.
“Jess wasn’t laying in the bed waiting to die,” Thompson says. “She was able to stay home for three months, get the support she needed, and spend time with her four children. She was given medications to help her be comfortable and functional for as long as she possibly could. She was at peace.”
Her hospice team managed her pain and symptoms, brought in a hospital bed and other equipment and provided frequent medical care, services that Thompson says are a blessing for patients as well as their caregivers.
Bon Secours is one of about two dozen hospice providers in Central Virginia. On any given day, hundreds of Richmond-area nurses, chaplains, social workers, home health aides, volunteers and physicians are paying home visits to terminally ill patients, providing them with critical and compassionate support.
Destigmatizing Hospice
While the concept of hospice care dates to medieval times, the first hospice practice in the United States was founded just 50 years ago by a nurse, two doctors and a chaplain who believed patients should pass in their own comfortable environment. Since then, it’s expanded to many providers in all states with two major directions: palliative care and hospice care. In most cases, patients in palliative care are still seeking active treatment, while patients in hospice have a terminal diagnosis and have forgone or exhausted treatment options.
Zach Holt, CEO of Crater Community Hospice in Petersburg, says after 15 years in the business he’s still surprised how many people have misconceptions about hospice. His company is part of a statewide coalition of hospice services working to raise awareness of its benefits. According to a recent report by American Health Rankings, Virginia is 30th in the nation for hospice use, with less than half of Virginians who are eligible for hospice choosing services.
“There’s a big stigma,” Holt says. “People think it’s designed for your last days of life when, in reality, it’s designed for your last six months of life. Studies have shown people across all disease states typically live longer on hospice than they do not on hospice. Our specialized teams are equipped to give patients a higher level of comfort.”
Trish Evans, a registered nurse and director of VCU Health Hospice, admits that hospice is a scary word and fear is a contributing factor for low utilization. “People don’t want to think about death and dying,” she says. “But it’s not about giving up, it’s about your quality of life. It’s a choice on how you want to spend your time with a terminal diagnosis if those are the cards that have been dealt to you.”
Holt encourages Virginians who qualify for hospice to sign up earlier, before they are actively dying, to receive the full benefit. According to the National Hospice and Palliative Care Organization, the median stay for patients in hospice care is 18 days, while Medicare approves stays that are 10 times longer.
Another misconception that leads people to avoid hospice is the possible high cost; in most cases, it’s financially reasonable. According to Debt.org, more than 90 percent of hospice care is covered by Medicare, and patients may be covered through private insurance and charity care.
On the personal end, Evans points out that some believe hospice patients are permanently bedridden at home. “Life can go on,” she says. “There are hair appointments and vacations and family events. We want to give patients the support they need and the comfort they need to continue to do those things before the end stage of their disease.”
Pediatric Hospice Care
When the unimaginable happens and a child is given a life-limiting diagnosis, Noah’s Children provides palliative and hospice services at no cost to families. While run by Bon Secours Richmond, Noah’s Children partners with all health systems in Central Virginia to help families navigate the most harrowing times.
In addition to nurses, physicians, social workers and chaplains, Noah’s Children employs a music therapist, an art therapist and bereavement counselors who visit the patient’s home. They also offer programming for parents and siblings. Nurses are available to attend doctor’s visits, helping parents manage complex treatment plans from multiple sub-specialists.
“We want to debunk the myth that we’re focused on death,” says Dr. Kelly Lastrapes, Noah’s Children medical director. “We’re focused on the best life children can live for as long as they can.”
Planning Ahead
Holt recommends that everyone of all ages have an advanced directive, a legal document that indicates an individual’s health care wishes. “As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations,” he says. “I see close-knit families get ripped apart when they haven’t discussed end-of-life care. One sister thinks one way, one sister thinks another, but Mom never told them what she wanted.”
Holt advises families to discuss financials and set realistic expectations. “You hear parents all the time joke about not putting them in a nursing home, so discuss the alternatives,” he says.
As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations. —Zach Holt, CEO of Crater Community Hospice
Some states with high hospice use, like Oregon and Maine, have also passed legislation allowing patients with terminal diseases to self-administer life-ending medication. The Death with Dignity National Center reports that legislation not only eases suffering but brings important conversations about death and dying out of the shadows and into the spotlight. The Virginia Senate passed a “Death with Dignity” bill in February, but members of the House of Delegates chose to table the bill until 2025.
Richmond-area hospice experts recommend that any time a family member has been diagnosed with a terminal illness, they should work with their medical team to prepare a treatment plan as well as an end-of-life plan.
Lastrapes adds that it’s helpful to keep a 10,000-foot view of the patient’s care, understand the trajectory of the prognosis, and set goals early on. While life is filled with unknowns, surrounding yourself with the right people can help ease the pain.
“When you’re born, you have a room full of people to support that baby,” Evans says. “It should be very similar when your life is over. It’s the one thing we’re all going to experience. You should have the ability to surround yourself with your family and your pets and those people who can support you and keep you comfortable.”
Choosing a Hospice Provider
Start your hospice conversation with your health care team and ask about preferred partners.
Medicare patients can enter their ZIP code at medicare.gov to find certified providers in the Richmond area.
Talk to friends, family and neighbors about their experiences with hospice.
Once you narrow down several hospice providers, interview them about specific services, additional resources, areas of specialty, organizational culture, religious affiliation and other differentiating factors that are important to you or your family.
Caring for people with serious illnesses or chronic conditions is one of health care’s most complicated — and important — challenges.
While medicine continues to improve the way we treat diseases such as cancer or heart failure, it doesn’t always do a great job of caring for the things that matter most to patients and their families, such as physical and emotional distress.
And despite their frequent visits to doctors and hospitals, people living with serious medical conditions may still have unaddressed symptoms like pain or fatigue, and often report poor communication about those symptoms with their health care providers.
In other words, medicine is pretty great at treating the disease — but not as good at caring for the whole person.
That’s where palliative care specialists enter the picture, helping people live and feel better throughout the course of a serious illness.
Palliative care is a growing field of medicine that focuses on helping patients and their families cope with the physical and emotional stressors of advancing health problems. There is strong evidence that palliative care not only can improve quality of life for seriously ill patients, but also may reduce avoidable hospital admissions and enable patients to spend more time at home doing what matters most to them.
What is palliative care?
Palliative care focuses on providing people with relief from the symptoms and stressors of serious illnesses, such as cancer, chronic heart or lung disease, dementia, neurologic diseases like Parkinson’s, chronic liver disease, kidney failure, and many others.
Delivered by a specialty-trained team of doctors, nurses, social workers and other clinicians, palliative care provides expertise in symptom management, care coordination and communication, with the goal of improving quality of life for both the patient and their loved ones. Palliative care is appropriate for people at any age, and any stage of a serious illness.
Importantly, palliative care is not the same thing as hospice.
While palliative care is led by clinicians specifically trained in that field, it’s provided in collaboration with other health care providers, including primary care doctors and specialists — and, unlike hospice care, it can be administered at the same time that the patient is receiving curative treatment, and at any stage of serious illness from the time of initial diagnosis.
A person with cancer undergoing chemotherapy, for example, might benefit from palliative care, as would a person with lung disease seeking a lung transplant. In fact, when people facing a serious illness receive palliative care early in their disease and alongside treatment for their underlying condition, evidence demonstrates that it may even prolong survival.
Unfortunately, the historical misunderstanding about palliative care’s association with hospice — and the general lack of awareness about palliative medicine as a specialty, even among providers — means that millions of people who could benefit from palliative care don’t get it.
Worldwide, only about 14% of people who need palliative care currently receive it, according to the World Health Organization.
Where can I receive palliative care?
Palliative care is provided in all settings. To best meet the needs of their patients, palliative care teams see people in the hospital, outpatient clinics, nursing facilities — and even in the comfort of their own homes.
Providing home and community-based palliative care is not only convenient for patients and their families, but it also aims to reduce certain complications of advanced illness that would otherwise require emergency room visits and hospitalizations.
The benefits — patients who feel better, have fewer unnecessary hospitalizations and have more support during stressful times — are attractive to patients, families and insurers alike. As a result, insurance providers such as Medicare are changing the way they reimburse for home-based palliative services, while health systems and other agencies are actively expanding access to palliative care across Pennsylvania and nationwide.
Today, there are more options than ever for home- and community-based palliative care.
How palliative care can help: One patient’s story
Barbara had just retired from a career in management at a local grocery store. She looked forward to the added time retirement would give her to do what mattered most, like spend time with her family and tend to her garden.
Unfortunately, a new cancer diagnosis thwarted these plans, and she was soon spending more time in the chemotherapy suite than with her grandchildren or her prized perennials. Barbara’s pain and fatigue prevented her from being active outside and limited her appetite.
When her primary care provider referred her to palliative care, Barbara was unsure what to expect.
The palliative physician suggested several interventions to help Barbara feel and function better, including medication changes and gentle exercise techniques, and provided additional resources for her family. The palliative care team also helped Barbara understand her care options and encouraged her to speak up about her preferences to her other health care providers and to her loved ones, so that everyone was on the same page about supporting her goals.
In time, these interventions helped lessen Barbara’s symptoms and streamline her care. Throughout her cancer journey, the palliative care team has remained a constant layer of support for Barbara and her family. With close attention to her goals and symptoms, the palliative care team helps Barbara live as well as possible, despite having a serious illness.
If you or a loved one has a serious medical condition, ask your doctor or insurance provider about a referral to palliative care.
