Once a week, the rooms of the Jeanne Garnier palliative care home in Paris reverberate to a different sound: a solo cello.
Claire Oppert, a concert cellist trained at the Moscow Conservatory, visits the facility on Fridays to play for its residents – many of whom are struggling with physical pain as well as coming to terms with incurable illness.
“I’m in permanent pain,” said Micheline Leroux, a cancer patient at the care centre in southwest Paris, one of the biggest of its kind in Europe.
“But I find that music helps a little to escape the pain,” said Leroux quietly, after listening to a stirring rendition of Albinoni’s Adagio, a Baroque classic.
“You pay attention, and if it’s a piece you know, you anticipate each coming note,” she said.
Besides the weekly recitals, Oppert, 55, has made it her mission to demonstrate the therapeutic effects of music by taking part in medical studies on the subject.
Cellist Claire Oppert plays music to soothe patient Bernard Genin, 79, at end-of-life care home Jeanne Garnier in Paris, France, May 21, 2021.
Staff at the care home are in no doubt.
“After Claire leaves, we find the patients in a calmer state, sometimes moved, sometimes happy,” said carer Margarita Saldana. “There can be tears or moments of joy.”
Oppert has been playing to end-of-life patients for almost a decade since she first visited a nursing home with her cello.
“In palliative care there’s sometimes still pain, in spite of the morphine and drugs,” she said. “Music really does have a calming effect on that residual pain.”
Ashley Scott has worked as a death doula for more than a year and has her own private practice, Benevolent Care.
Ashley Scott wants people to feel safe, comfortable
By Kara Mason
Ashley Scott describes the emotional side of her job as a death doula like a fountain in the middle of a lake.
Her job is to help shepherd a dying person through an experience that is so intimate, common and yet mostly taboo in American culture. Scott wants people to feel comfortable, safe and cared for in their last moments.
“You’re pouring out this energy and love and compassion and space for them to consume it all,” she said. “I really didn’t realize the amount of energy it took until my last client.”
The client, a woman who had outlived her husband and daughter, was standing up and alert when Scott first arrived at her home.
“I know who you are,” Scott remembers her saying. “I’ve been waiting for you.”
It gave Scott, who has worked in hospice care for over a decade, chills. She’d taken care of many dementia and Alzheimer’s patients and somehow, even as agitation and bursts of energy can be common close to death, this was different. The statement seemed “very cognitive,” she said.
The woman’s room was disheveled, stuffy and a daytime court television show was blaring, so Scott said she put her in bed, turned on some instrumental music, rearranged the furniture a bit, opened a window and dimmed the lights. She rubbed the woman’s arms and her face to make her comfortable.
“In that five hours we were able to hold that space for her and help her go into an active dying transition,” she said.
The woman had been in hospice care for more than a year before that day.
Scott officially started her journey as a death doula a year ago, but caring for people at the end of their life has been her passion since starting as a certified nursing assistant at a nursing home.
“It was just so beautiful, like to help and be there and basically just prepare and honor the shell that this person had,” she said of the first death she experienced as a hospice nurse. “After that, it was kind of just like if anybody was on the brink, I had this inkling of magnetism to them. I want to make sure they’re cared for and comfortable and loved and appreciated in their last days because it’s their most vulnerable point in life.”
Throughout her career at nursing homes, Scott said she knew there was something missing in caring for the dying. There wasn’t anybody to “hold the space” – a phrase that many people involved in end-of-life care use frequently in reference to death doulas’ work.
It wasn’t until a friend had sent her a link to a Zoom seminar about death doulas last May that it all came together for Scott, who is 32 and lives in Aurora with her fiance. She’s part of a growing number of workers dedicated to making death a more comfortable experience.
Doulas, by loose definition, tend to all the duties of dying that medical personnel do not. In a lot of ways they’re equivalent to a wedding planner, but for your final living moments.
They can help arrange funeral services, help complete legacy projects, make sure the aesthetic of a death place is exactly what a client wants and help family members cope after the passing of their loved one.
“We treat dying like a fast food experience,” Scott said. “And it should be treated like a five-course meal.”
For people who work in hospice care, the arrival and growing popularity of the death doula is welcomed, and it’s changing the approach and culture around an experience everybody will have.
Evolving care
Katelyn Van Valkenburg, the volunteer coordinator at Denver-based Namaste Hospice, jokes that she’s a little protective of Scott, who first started volunteering her doula services in November.
Van Valkenburg said she doesn’t want Scott to become overworked or burnt out because it’s become obvious how necessary doulas are to hospice care. Before Scott, the organization consisted of nurses, social workers and volunteers, but after working with Scott they’ve welcomed five more volunteer doulas.
“Some of us in hospice have grown accustomed to the routine death,” Van Valkenburg said. “They force us back into thinking about making this unique.”
Scott arrived at Namaste after two waves of the COVID-19 pandemic, but it felt “kind of like a new beginning,” Van Valkenburg said. For months, hospice nurses had been scrambling to care for patients, some inside nursing or retirement homes. Early on in the pandemic, sometimes Namaste’s workers weren’t even allowed inside facilities and had to find ways to comfort their dying patients from bedroom windows or over the telephone or a computer.
“It shook us to our core,” she said.
Nurses and social workers had to become creative, Van Valkenburg said. They arranged the donation of more than 150 radios for their patients, and they put aromatherapy diffusers in patient rooms when they could to make the atmosphere as comfortable as possible.
This winter, adding doulas to their care model helped hold the caretakers to “being fully present,” she said.
Even though neither private insurance nor Medicaid covers the cost of doulas, like it does for end-of-life medical care through a hospice organization, Namaste wants to eventually be able to pay its doulas. For now, they volunteer their services, mostly to meet requirements through certification programs.
Scott started her own private doula practice, called Benevolent Care, where planning services can range from $70 for one hour of Death Day planning to an extensive package where Scott is available around the clock. She said she usually works those costs out on an individual basis.
“Everybody is so different, and I don’t want to deny them,” she said.
While doulas don’t administer medical care, Nancy English, an assistant professor who teaches palliative care at the University of Colorado Anschutz Medical Campus, says there’s definitely a role for them in hospice settings.
“We need to look at death as important as birth, it’s a transition from one state to another. We know it’s a major transition, even if we don’t know what’s next,” she said. “The death doula helps us make it more sacred.”
English said she recently took a course for death doulas, and while she doesn’t plan on practicing as one, she wanted to see how it could help her prepare students for providing more holistic care.
“A doula can take the time to actually address some of the things that have been fragmented in care,” English said. “I think nurses are so creative and so caring as a group, and they want to do it, but you have one patient that’s dying in this bed and the next patient is coding. It’s just a difficult role.”
English, who was a hospice nurse herself for many years before becoming a professor, said the workload just doesn’t lend itself to the kind of one-on-one attention and comfort a doula can provide.
Scott said she believes her background as a hospice nurse has helped her in becoming a doula because she understands the medical jargon and also the struggle in not being able to comfort each patient as much as they might need.
It’s also good for the families of people in hospice care.
“Imagine having someone on your side, someone who is really right there with you walking alongside you in this process,” she said. “Someone that you could call who was there with you that saw certain things that maybe you missed, and you can call them and just be validated.”
“You’re drawn to it because either you have a curiosity or an experience,” she said.
The movement
The moment Scott learned that death doulas existed, she said she knew it was for her. That tends to be the case with most people who work in end-of-life care, said Cindy Kaufman, president of the Colorado End of Life Collaborative.
“You’re drawn to it because either you have a curiosity or an experience,” she said.
Kaufman and a small group of other doulas organized the collaborative because they saw a need for a common place for people working in the field. Somewhere they could connect services if they needed or just have a support system. The community has been steadily growing over the years, but Kaufman said she really saw an uptick about three years ago.
That’s in part because of a growing “death positive” movement, she said, which is largely credited to Los Angeles-based writer, activist and mortician Caitlin Doughty. In 2011, Doughty started a collective called The Order of the Good Death, which became a foundation for much of the crusade to see death in a brighter light.
Since then, death doulas have grown in popularity, according to Kaufman. There isn’t a sure way to tell just how many doulas there are in Colorado because they tend to work in their own private practices or through volunteering like at Namaste.
The movement has also birthed “death cafes” – groups where people can gather to talk about all aspects of dying – all over the country. English started a Denver-based death cafe in 2014, which typically met Sundays at the Tattered Cover bookstore before the pandemic. For the last year, she’s been hosting a small group on Zoom.
“They’ve been wonderful,” the professor said, echoing Kauffman that Westerners are beginning to view death in a different way.
Kaufman, English and Scott each say they see the shift, and maybe the pandemic – a collective experience of sudden death – may push forward even further.
“A life lost is a life lost and we need to honor that, and during COVID we didn’t get to,” Scott said. “We didn’t get to honor the dying process. It literally just happened, and I guess that’s what really drew me into being a doula. We get to honor the process.”
— A Geriatrician Learns the Emotional and Physical Toll of Caregiving
Dr. Rebecca Elon’s life took an unexpected turn in 2013 when she noticed personality changes and judgment lapses in her husband, Dr. William Henry Adler III. He was eventually diagnosed with frontotemporal dementia with motor neuron disease and died in February.
The loss of a husband. The death of a sister. Taking in an elderly mother with dementia.
This has been a year like none other for Dr. Rebecca Elon, who has dedicated her professional life to helping older adults.
It’s taught her what families go through when caring for someone with serious illness as nothing has before. “Reading about caregiving of this kind was one thing. Experiencing it was entirely different,” she told me.
Were it not for the challenges she’s faced during the coronavirus pandemic, Elon might not have learned firsthand how exhausting end-of-life care can be, physically and emotionally — something she understood only abstractly previously as a geriatrician.
And she might not have been struck by what she called the deepest lesson of this pandemic: that caregiving is a manifestation of love and that love means being present with someone even when suffering seems overwhelming.
All these experiences have been “a gift, in a way: They’ve truly changed me,” said Elon, 66, a part-time associate professor at Johns Hopkins University School of Medicine and an adjunct associate professor at the University of Maryland School of Medicine.
Elon’s uniquely rich perspective on the pandemic is informed by her multiple roles: family caregiver, geriatrician and policy expert specializing in long-term care. “I don’t think we, as a nation, are going to make needed improvements [in long-term care] until we take responsibility for our aging mothers and fathers — and do so with love and respect,” she told me.
Elon has been acutely aware of prejudice against older adults — and determined to overcome it — since she first expressed interest in geriatrics in the late 1970s. “Why in the world would you want to do that?” she recalled being asked by a department chair at Baylor College of Medicine, where she was a medical student. “What can you possibly do for those [old] people?”
Elon ignored the scorn and became the first geriatrics fellow at Baylor, in Houston, in 1984. She cherished the elderly aunts and uncles she had visited every year during her childhood and was eager to focus on this new specialty, which was just being established in the U.S. “She’s an extraordinary advocate for elders and families,” said Dr. Kris Kuhn, a retired geriatrician and longtime friend.
In 2007, Elon was named geriatrician of the year by the American Geriatrics Society.
Her life took an unexpected turn in 2013 when she started noticing personality changes and judgment lapses in her husband, Dr. William Henry Adler III, former chief of clinical immunology research at the National Institute on Aging, part of the federal National Institutes of Health. Proud and stubborn, he refused to seek medical attention for several years.
Eventually, however, Adler’s decline accelerated and in 2017 a neurologist diagnosed frontotemporal dementia with motor neuron disease, an immobilizing condition. Two years later, Adler could barely swallow or speak and had lost the ability to climb down the stairs in their Severna Park, Maryland, house. “He became a prisoner in our upstairs bedroom,” Elon said.
By then, Elon had cut back on work significantly and hired a home health aide to come in several days a week.
In January 2020, Elon enrolled Adler in hospice and began arranging to move him to a nearby assisted living center. Then, the pandemic hit. Hospice staffers stopped coming. The home health aide quit. The assisted living center went on lockdown. Not visiting Adler wasn’t imaginable, so Elon kept him at home, remaining responsible for his care.
“I lost 20 pounds in four months,” she told me. “It was incredibly demanding work, caring for him.”
Meanwhile, another crisis was brewing. In Kankakee, Illinois, Elon’s sister, Melissa Davis, was dying of esophageal cancer and no longer able to care for their mother, Betty Davis, 96. The two had lived together for more than a decade and Davis, who has dementia, required significant assistance.
Dr. Rebecca Elon’s sister Melissa Davis (right) was the primary caretaker for their mother, Betty Davis, for the past 10 years. But new living arrangements had to be made for their mother when Melissa Davis died of esophageal cancer in May 2020.
Elon sprang into action. She and two other sisters moved their mother to an assisted living facility in Kankakee while Elon decided to relocate a few hours away, at a continuing care retirement community in Milwaukee, where she’d spent her childhood. “It was time to leave the East Coast behind and be closer to family,” she said.
By the end of May, Elon and her husband were settled in a two-bedroom apartment in Milwaukee with a balcony looking out over Lake Michigan. The facility has a restaurant downstairs that delivered meals, a concierge service, a helpful hospice agency in the area and other amenities that relieved Elon’s isolation.
“I finally had help,” she told me. “It was like night and day.”
Previously bedbound, Adler would transfer to a chair with the help of a lift (one couldn’t be installed in their Maryland home) and look contentedly out the window at paragliders and boats sailing by.
“In medicine, we often look at people who are profoundly impaired and ask, ‘What kind of quality of life is that?’” Elon said. “But even though Bill was so profoundly impaired, he still had a strong will to live and retained the capacity for joy and interaction.” If she hadn’t been by his side day and night, Elon said, she might not have appreciated this.
Meanwhile, her mother moved to an assisted living center outside Milwaukee to be nearer to Elon and other family members. But things didn’t go well. The facility was on lockdown most of the time and staff members weren’t especially attentive. Concerned about her mother’s well-being, Elon took her out of the facility and brought her to her apartment in late December.
For two months, she tended to her husband’s and mother’s needs. In mid-February, Adler, then 81, took a sharp turn for the worse. Unable to speak, his face set in a grimace, he pounded the bed with his hands, breathing heavily. With hospice workers’ help, Elon began administering morphine to ease his pain and agitation.
“I thought, ‘Oh, my God, is this what we ask families to deal with?’” she said. Though she had been a hospice medical director, “that didn’t prepare me for the emotional exhaustion and the ambivalence of giving morphine to my husband.”
Elon’s mother was distraught when Adler died 10 days later, asking repeatedly what had happened to him and weeping when she was told. At some point, Elon realized her mother was also grieving all the losses she had endured over the past year: the loss of her home and friends in Kankakee; the loss of Melissa, who’d died in May; and the loss of her independence.
That, too, was a revelation made possible by being with her every day. “The dogma with people with dementia is you just stop talking about death because they can’t process it,” Elon said. “But I think that if you repeat what’s happened over and over and you put it in context and you give them time, they can grieve and start to recover.”
“Mom is doing so much better with Rebecca,” said Deborah Bliss, 69, Elon’s older sister, who lives in Plano, Texas, and who believes there are benefits for her sister as well. “I think having [Mom] there after Bill died, having someone else to care for, has been a good distraction.”
And so, for Elon, as for so many families across the country, a new chapter has begun, born out of harsh necessities. The days pass relatively calmly, as Elon works and she and her mother spend time together.
“Mom will look out at the lake and say, ‘Oh, my goodness, these colors are so beautiful,’” Elon said. “When I cook, she’ll tell me, ‘It’s so nice to have a meal with you.’ When she goes to bed at night, she’ll say, ‘Oh, this bed feels so wonderful.’ She’s happy on a moment-to-moment basis. And I’m very thankful she’s with me.”
Some years ago, I helped tend to a friend of mine who was dying of cancer. Near the end of his life, he had reached a place of equanimity around dying.
But instead of honoring his wishes for a peaceful death, his doctors ordered aggressive chemotherapy treatment, which did nothing to halt his cancer. The treatments caused him immense suffering, rendering him unable to sleep, eat, or converse with family and friends as he was dying.
Unfortunately, deaths like my friend’s are not that rare. Though more than 70 percent of Americans surveyed say they want to die in their own home without unnecessary procedures to extend their lives, 50 percent of all deaths occurs in facilities away from home. Of those, 40 percent occur in ICU’s, where physicians are charged with doing everything they can to keep a person alive, regardless of the outcome.
Sometimes, the quest to avoid death can seem extreme, like in the much-publicized cases of Terry Shiavo and Marlise Munoz, where unnecessary life-extending procedures created exorbitant medical bills and emotionally burdened their loved ones.
But, if Shiavo and Munoz are examples of a bad death, is there any better way? Is a “good death” just an oxymoron? Or can the experience of death be far more positive—an opportunity for growth and meaning?
Listening to dying people
These are questions that I first began to consider when I was a young psychologist at the oncology unit at UCSF in the mid-1970’s. At that time, I was the first and only mental health worker on the staff on a 40-bed unit. Modern palliative care was not widely understood or employed yet, and hospice care was not as readily accessible as it is now. My job was to help these patients with whatever emerged psychologically around their deaths.
And, there was a lot going on psychologically which wasn’t being attended to. The physicians and nurses in our unit were talented, skilled, well-intentioned people. But they focused on staving off death at all costs. Their training gave no guidance on how to provide their patients with the conditions for a good death—one that allowed patients to come to terms with their life and find peace and wellbeing at the end.
Since then, I’ve worked with hundreds of dying people. To help combat the lack of trained support staff, I founded Shanti—a peer counseling program that provides compassionate, trained listeners to help patients and their families through serious illness and the transition of dying. Shanti volunteers have supported many people facing death to do so with grace through their presence and compassion.
What I’ve learned through my experience is that what people most need on their deathbed is to be heard—to have their wishes considered and, whenever possible, fulfilled. But even with Shanti’s success, and the proliferation of palliative care programs and hospices around the nation, there are still many dying Americans who don’t get that chance. Here are seven ways to help create the conditions for a good death.
How to die well
1. Experience as little pain as possible.
When I talk of being pain-free, I mean physically, psycho-socially, and spiritually pain-free. Nowadays, there are medications that can manage most people’s physical pain and make them far more comfortable, and these should not be denied to any patient. Spiritual pain can occur, too. In fact, I have sat with several clergy who had crises of faith on their deathbeds. Sometimes, easing spiritual pain can be accomplished by the presence of a person of faith or readings from sacred texts; other times, it’s better to have someone who can engage in spiritual questioning. Either way, spiritual issues are common at the end of life, and they need attention.
2. Recognize and resolve interpersonal conflicts.
We must also recognize psycho-social pain, the residue of life’s unresolved conflicts with other people. There are almost always interpersonal issues within families, and sometimes between close friends, when one is dying—people who’ve become estranged, “I love you”’s that were never expressed, and more. Ira Byock, a palliative care doctor, wrote in his book, The Four Things That Matter Most, that there are four basic messages a person needs to communicate at the end of life:
I love you.
Thank you.
I forgive you.
Please forgive me.
These, I think, are a good start. A good death creates a space for people to say those words.
3. Satisfy any remaining wishes that are consistent with their present condition.
Some people want to live long enough to go to a grandson’s graduation, to see a book published, to see a cousin they were close to who lives 3000 miles away. But, be careful that these are the wishes of the patient and not just the patient’s significant others. There’s a difference between a good death and an appropriated death—one that’s stolen from the dying person by other forces, including the agenda of close family members.
4. Review their life to find meaning.
There are two main ways that people on their deathbeds find meaning: in the recognition of all of the people they have loved and who have loved them, and in the work that they’ve done that has contributed to the greater good. In some cases, contributory work will be obvious; in others, it may be less so. But, helping the dying to articulate what brought meaning to their lives will help them feel more at peace with their death.
5. Hand over control to a trusted person, someone committed to helping them have the kind of death they desire.
The whole issue of deathbed conversations—asking a person what he needs or wants—is very important. What does the dying person want? How can they get that? Is it reasonable? Sometimes it’s not reasonable: A friend’s dying mother wanted help in ending her own life; well, that wasn’t going to happen. Sometimes you can have the conversation without acting on it, and any conflicts or issues can be addressed.
6. Be protected from needless procedures that serve to only dehumanize and demean without much or any benefit.
Emergency rooms, ICU’s, and 911 are set up to preserve life and are not typically supportive of the conditions for a good death. If a person is suffering tremendously, there may be cause to get emergency help; but for most situations, when you throw a person into the larger healthcare system, the prevention of death becomes the imperative, and that can serve to increase suffering for the dying person. One has to be very persistent and clear to avoid procedures that are unwanted—to insist on palliative or hospice care, instead. It can help to have an advanced directive or a “physician-orders for life sustaining treatment” in writing and communicated to loved ones; but often a person also needs a vocal advocate—a family member, friend, or volunteer caregiver.
7. Decide how social and how alert they want to be.
Sometimes a dying person wants solitude; sometimes he or she wants friends and family around. Whatever the case, the dying person should decide. And, though trickier, dying people should be allowed to decide how much consciousness they want. Some people want to sleep all of the time; others want to be alert as much as possible. Once these wishes are known, an advocate can help make that happen.
A good death is possible
People who are dying should be treated as living human beings. They will have good and bad days. The important thing for caregivers is to be mindfully present. The poet John Milton wrote, “They also serve who only stand and wait.” We are so addicted to action that it may feel like we’re doing nothing if we just sit by someone’s deathbed. But it’s often very important to bear witness and listen or hold a hand.
The potential for growth through dying is definitely there. It doesn’t mean it will automatically happen, though. Death can bring out our goodness—our capacity to transcend, love, and grow—or it can bring out our capacity to hate, create enemies, and deteriorate psychologically. To help promote the former, we should create sacred spaces for those who are dying so that they can benefit most from the experience. If we know the conditions for a good death, we are more apt to prepare ourselves and the ones we love to die with dignity and the sense of a life well-lived, rather than treating death as a calamity requiring a trip to the hospital.
A good death is no oxymoron. It’s within everyone’s realm of possibility. We need only realize its potential and prepare ourselves to meet it mindfully, with compassion and courage.
As you or a loved one nears the end of life due to a terminal illness, hospice care might be a consideration. Hospice is a type of care in which a team of specialized health care professionals make someone who is terminally ill as comfortable as possible during the time they have remaining.
Medicare does cover hospice, but you must meet specific requirements [1]:
The hospice provider must be Medicare-approved.
You must be certified terminally ill by a hospice doctor and your doctor (if you have one), meaning you’re expected to live six months or less.
The hospice care must be for comfort care, not because you’re trying to cure your condition.
You must sign a statement opting for hospice care over other Medicare benefits to treat your illness. (See an example of this statement here[2].) If you’re thinking about seeking treatment to cure your illness, talk to your doctor — you can stop hospice care at any point.
Hospice care through Medicare generally takes place in your home or a facility where you live, such as a nursing home.
What hospice care is covered?
Hospice care providers care for the “whole person,” meaning they help address physical, emotional, social and spiritual needs [3].
All items and services needed for pain relief and symptom management.
Medical, nursing and social services.
Drugs to manage pain.
Durable medical equipment for pain relief and managing symptoms.
Aide and homemaker services.
Other covered services needed to manage pain and additional symptoms, and spiritual and grief counseling for you and family members.
In addition to you and your family members, your hospice care team may include some or all of the following:
You’ll also have the option of a hospice nurse and doctor who are on-call 24/7, for the sole purpose of giving your family support.
What will it cost?
Under Original Medicare, there are no costs for hospice care, although you’ll still pay any Medicare Part A and Medicare Part B premiums.
You’ll pay a copayment of up to $5 for each prescription for outpatient drugs to manage pain and symptoms. You may also pay 5% of the Medicare-approved amount for inpatient respite care — this is care you get in a Medicare-approved facility so your day-to-day caregiver can rest.
What isn’t covered?
Once your hospice benefit has begun, Medicare will not cover any of the following:
Curative treatment: Any treatment meant to cure your terminal illness or any related conditions.
Curative drugs: Prescription drugs meant to cure your condition.
Care from a hospice provider that wasn’t arranged by your hospice medical team. Once you have a hospice provider, you must get care arranged by them. You can still see your primary doctor or nurse practitioner if you’ve picked them to be the attending medical professional that helps manage your care.
Room and board: If you’re at home or you live in a nursing home or hospice inpatient facility, Medicare will not cover room and board. If your hospice team decides you need a short inpatient or respite care stay, Medicare will cover the costs, although you may owe a small copayment.
Care received as a hospital outpatient (such as in an ER), as a hospital inpatient or ambulance transport. However, Medicare will cover these services if they’re arranged by your hospice team or they’re not related to your terminal illness.
Starting hospice care
If you have Medicare Advantage, your plan can help you find a local hospice provider.
The hospice benefit is meant to allow you and your family to stay together at home unless you require care at an inpatient facility. If you need inpatient care at a hospital, the arrangements must be made by your hospice provider — otherwise you might be responsible for the costs of your hospital stay [4].
How long can you get hospice care?
If you’ve been in hospice for six months, you can continue to receive hospice care, provided the hospice medical director or hospice doctor reconfirms your terminal illness at a face-to-face meeting.
If you have other health issues that aren’t related to your terminal illness, Medicare will continue to pay for covered benefits, but generally, hospice focuses on comfort care.
Under your hospice benefit, you’re covered for hospice care for two 90-day benefit periods followed by an unlimited number of 60-day benefit periods. At the start of every benefit period after the first, you must be recertified as terminally ill.
What if you’re in a Medicare Advantage plan?
Once your hospice benefit begins, everything you need will be covered by Original Medicare, even if you decide to stay in your Medicare Advantage plan or another Medicare health plan. (You do have to continue paying the premiums.)
If you remain a member of a Medicare Advantage plan, you can use the plan’s network for services that aren’t related to your terminal illness, or you can use other Medicare providers. Your costs will depend on the plan and how you follow the plan’s rules.
Nerdy tip: If you start hospice care after Oct. 1, 2020, you can request a list of items, services and drugs from your hospice provider that they’ve classified as unrelated to your terminal illness and related conditions, including the reasons behind their inclusion on the list. (Find an example of this kind of statement here.)
Can you stop hospice care?
If your condition gets better or goes into remission, you may wish to end hospice care. You can stop hospice care at any point, but you must make it official: You’ll need to sign a form that states the date your care will stop.
Note that you should sign a form of this kind only if you are ending hospice — there are no forms with an end date when you start hospice care.
If you were in a Medicare Advantage plan, you’ll still be a member of that plan after you end hospice and are eligible for coverage from the plan. If you’re a member of Original Medicare, you can continue with Medicare after you end hospice care.
If you have additional questions about your Medicare coverage, visit Medicare.gov or call 1-800-MEDICARE (800-633-4227, TTY: 877-486-2048).
Works cited
Medicare.gov, “Hospice care,” accessed May 3, 2021.
Centers for Medicare & Medicaid Services, “Hospice,” accessed May 3, 2021.
Most of us don’t like to talk about our own death. And when we refer to other people’s deaths, we often say things like “Her health is failing” or “He failed treatment.” These common sentiments make it sound like death is an option or that we can prevent it somehow—if only we ate more kale or walked 10,000 steps a day.
But guess what? Death isn’t optional.
Death is as much a part of our life as birth. And, just like a birth, it goes better when we are prepared for it. Not that we can control all outcomes or make it pain-free—but there is a lot we can do to help make it easier and more meaningful.
In our new book, A Beginner’s Guide to the End, we talk about all of the ways people can prepare themselves and their family members for the inevitable. Some of our book focuses on basic practicalities—like how to talk to doctors if you have a chronic illness, how to make treatment decisions, what documents to have in place for your end-of-life care, and how to create wills and trusts. We try to provide a comprehensive list of resources and detailed advice about how to manage this part of dying.
But, while many people think to prepare for the practical aspects of dying, too often they give short shrift to the emotional side of dying—meaning, what to do so that your death has more meaning and is less emotionally trying for yourself and those left behind.
There are many ways that you can improve the experience of dying if you plan for it and communicate your wishes to your loved ones. Here are some of the ideas we recommend in our book.
Don’t leave a mess
Many people don’t realize that the stuff they’ve been saving may not be of much value to those they leave behind. Therefore, it’s important to take time while you are still alive to clean out those closets and attics. Doing a big purge serves a dual purpose: It will make you feel lighter and also lighten the load on loved ones when you’re not around to help sort through your belongings.
It’s important to ask yourself why you’re keeping so much stuff. It is because you still use it and it brings you pleasure? Or does keeping it push away thoughts of dying? Or are you overwhelmed by the task of going through it all?
It can be cathartic to set aside time to go through your possessions, reflecting on what they mean to you, then letting them go. In some cases, you may want to save family heirlooms that have special value and make a plan to talk to your heirs about keeping them after you die. But it will have more meaning for them if you explain why you’d like them to have the item and what it means to you.
Clean out your emotional attic
Cleaning out your emotional attic is important, too. This may include sharing old secrets that you have kept from loved ones that are likely to be discovered after your death. Especially in this age of popular DNA testing, it’s important not to leave important things unsaid, though it requires sensitivity in the delivery.
If your secrets are just too damaging to reveal, consider enlisting someone to “scrub down” your life after you die. This can be a close friend who goes through your medicine cabinet, electronic files, and nightstand to rid them of old medications, personal diaries, sex toys, and other unmentionables. If you are happier knowing that these parts of your personal life won’t be exposed after you’re gone, we are not here to shame you! Just take care to make it a choice.
Mend important relationships
When people die, they don’t regret not having worked harder; they regret not having worked on their relationships. It’s important to mend old wounds before it’s too late. Even if you meet resistance from loved ones, keep pushing for more conversations, making sure you say what you want to say to them now.
In Ira Byock’s book, The Four Things That Matter Most, the pioneering palliative care physician talks about what most people long to hear that can help mend even long-fractured relationships:
Please forgive me.
I forgive you.
Thank you.
I love you.
Why these four phrases? True apologies and forgiveness, while helpful to consider at any stage of life, can go a long way toward making someone’s death more peaceful. Gratitude and love are what most people tend to need at the end of life. Closure is a human construct, rather than an act of nature, and a very useful one at that. This framework offers a recipe.
When we asked Dr. Byock if he would add anything to this list, 14 years after publishing that book, he said, “It’s useful for a parent to say to their child, ‘I’m so proud to be your mother, I’m proud to be your father.’” He’s met many men in their 60s who still yearn to hear that from a father who’s long gone.
Leave a mark
Legacy can be a loaded word. But most dying people want to know they mattered in some way, and they want to leave a mark. While for some this will mean using assets to fund a scholarship or a trust for their kids, others will have fewer material—but no less valuable—things to leave behind.
In a survey of baby boomers, only 10 percent thought it “very important” to inherit financial assets from parents, while 77 percent said that receiving and providing “values and life lessons” is very important. This means that money is not the only thing of value you can leave behind, and you may want to start thinking about what you want to pass down.
Here are some ideas that we’ve found helpful to those who wonder what to leave.
1. Leave your story. Telling the story of your life and leaving a record of experiences, people, and ideas that mattered to you gives those who love you a feeling of continuity from one generation to the next.
While you may assume that no one will care, imagine this: What would it be like to have the story of your great-great-grandmother in your hands? Wouldn’t that be amazing?
If you’re still daunted by this idea, you may want to enlist the services of StoryCorps or StoryWorth—two organizations committed to helping people get their stories down. Or you could create a family tree, perhaps using Ancestry.com or the National Archives. Fun for you, important for those you leave behind, and research suggests doing so may help improve your and your caregiver’s well-being at the end of life.
2. Leave a letter. Writing a letter can be a good way to put into words things that may be difficult to say in person. You might want to express how much you love someone, how proud you are of them, what they mean to you, your hopes for their future. If you need help, you can look to services like Last[ing] Letters.
3. Leave an ethical will. An ethical will is a way of transferring immaterial things to your loved ones: your life lessons and values. It’s not a replacement for a regular will, but a complement to it, and research suggests it reduces your suffering by taking care of “unfinished business” and bringing a deeper sense of purpose to the life you still have.
An ethical will can explain why you made certain choices in your legal will—e.g., why you left your car to your youngest daughter instead of all of your children—or tell a story about where you came from and what you value. Barry Baines, a hospice medical director who wrote a book called Ethical Wills, found that 77 percent of his patients felt their emotional well-being improve and 85 percent felt their physical well-being improve after completing an ethical will.
Of course, there are many other ways people can make the experience of saying goodbye less fraught. Few folks will get to every last detail before the end comes; as ever, do the best with what you have, while you can, and forgive yourself and others the rest. By taking care of emotional needs and focusing on what you hope to leave behind, you can bring more meaning to the experience and ease the burden on loved ones in the process. In other words, bring the same dignity and care to death that you bring to life.
Dying patients who are in pain are usually given an analgesic, such as morphine, to ease their final hours and days. And if an analgesic isn’t enough, they can be given a sedative – something to make them more relaxed and less distressed at the end of life. We have recently written about a third approach: using a general anaesthetic to ensure that the dying patient is completely unconscious. This has been described previously, but largely overlooked.
There are two situations when a general anaesthetic might be used in dying patients. The first is when other drugs have not worked and the patient is still distressed or in pain. The second is when a patient has only a short time to live and expresses a clear wish to be unconscious. Some dying patients just want to sleep.
But what type of anaesthesia are we talking about? If you need surgery or a medical procedure, there are three options. First, being fully awake, but having local anaesthesia to block the pain. Second, you could be partly sedated: you would be less stressed or worried about it, but you might remember some of the procedure afterwards. Finally, you could have a general anaesthetic and be out cold, with no memory of the procedure afterwards.
Any of these might be appropriate, depending on the procedure and depending on the person. But the option with the highest chance that you won’t feel anything is, of course, general anaesthesia.
These same three options could be offered to a dying patient. Some people might want to be as awake as possible. (Like the poet Dylan Thomas, they might not wish to “go gentle into that good night”.) Some might want to be sedated, if necessary. Others might want to be completely asleep.
The choice of general anaesthesia at the end of life is potentially popular. Last year, we surveyed more than 500 people in the UK about end-of-life options. Nearly 90% said they would like the option of a general anaesthetic if they were dying.
You might wonder, is this not just euthanasia by another name? Giving someone medicines to ensure that they are unconscious as they die naturally is different from giving someone medicine to end their life. General anaesthesia is legal, whereas in many countries, including the UK, euthanasia is illegal. This means that the option of anaesthesia could be available now for dying patients in the UK without changing the law. France has recently recognised the right for dying patients to be unconscious.
Wouldn’t it be too risky?
There are side-effects with all medicines, but recent advances mean that it is possible to give anaesthetic medicines to patients close to death without affecting their breathing. The medicine is given slowly, and the patient made unconscious gradually over 15 to 20 minutes. The medicine can be slowed or stopped at any point.
Tray of anaesthetic drugs.
Previous studies that have used anaesthesia at the end of life, have continued the medicines for one to 14 days until the patient died naturally.
This will not be for everyone. It may not be possible for those who are dying in their own home. And some people will not want it. But we have the means to offer dying patients a gentle alternative end to their days. We believe that there is a strong ethical case to make the option of general anaesthesia at the end of life more widely available.
