With more Americans living longer and aging in place, more also want to die at home.
Few, however, actually do.
Karen Clayton of Oak Harbor believes more terminally-ill individuals and their caregivers might choose home end-of-life care if they knew more about the physical and emotional support provided by hospice services.
“It’s my passion to demystify hospice so patients and families will use this truly extraordinary care,” she said. “I believe most people think hospice is a really good thing—for someone else. They do not realize they can have six months of quality end-of-life care wherever they live.”
Clayton’s just-released book, Demystifying Hospice: Inside the Stories of Patients and Caregivers, is based on years of experience working as a social worker in public and private hospitals, a hospice, and with the American Cancer Society. She plans to discuss her book and the topic of hospice care at a series of presentations and workshops around Whidbey Island this fall.
Clayton describes herself as a hospice social worker, sociologist, author and a story catcher.
Studies have shown that approximately 80% of Americans would prefer to die at home, if possible. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home.
According to the National Hospice Foundation, many people at the end-of-life are being referred to hospice care too late or not at all.
Many Americans don’t realize hospice care is a benefit of Medicare, Medicaid, VA benefits, and many other insurance plans, Clayton said. Additionally, hospice organizations can help those with no insurance.
“Hospice offers at least six months of care for terminally ill patients and their caregivers,” she added. “So, it’s stunning that, in 2015, half of the U. S. hospice patients had this truly extraordinary care for 17.4 days or less and one-third for seven days or less.”
Home hospice services consist of a team of professionals who regularly visit patients at home and are available 24 hours a day. Nurses, social workers, chaplains and nurse aides comprise the main team and some services also provide massage therapists, even instrumentalists, such as harpists, to play soothing music.
Hospice services also supplies medication and delivers equipment, such as hospital beds, wheelchairs and personal hygiene items.
Clayton’s book doesn’t focus on medical problems but rather the emotional and practical help given by socials workers to patients, caregivers and families.
“The caregiver receives training and support from the team, and it is difficult,” Clayton said. “It helps to have someone to talk with about the types of feelings involved; fear, grief, anger, curiosity about how to help in the best way.”
She also provides caregiving tips and suggests ways to connect with people in their final days.
“It’s good when families spend time with photo albums, old family films, games, movies, playing checkers or chess, remembering the good times in their lives, the things they have contributed through their job or service,” Clayton said. “Quality of life can be maintained when patients are offered activities, food, family interactions within the limits they have.”
Clayton’s book describes the hope, healing and support that home hospice care offers.
Each story addresses some aspect of helping families through the caregiving and grieving process and it offers comfort and understanding to readers who may be going through similar experiences.
“These stories will lift your spirits and touch your heart,” Clayton said. “It’s a joyful thing to learn how to provide good physical and emotional care for the person you love.”
Karen Clayton will discuss hospice care and her book at the following free events open to the public:
Three Journeys: Writing, Caregiving, Publishing; 3 p.m., Thursday, Oct. 18, Friends of the Library, Oak Harbor Library
From a distance, it can be hard to assess the quality of your family member’s caregivers. Ideally, if there is a primary caregiver on the scene, he or she can keep tabs on how things are going.
Perhaps you have already identified friends or neighbors who can stop in unannounced to be your eyes and ears. Sometimes, a geriatric care manager can help.
You can stay in touch with your family member by phone and take note of any comments or mood changes that might indicate neglect or mistreatment. These can happen in any setting, at any socioeconomic level. Abuse can take many forms, including domestic violence, emotional abuse, financial abuse, theft, and neglect.
Sometimes the abuser is a hired caregiver, but he or she can also be someone familiar. Stress can take a toll when adult children are caring for aging parents, or when an older person is caring for an aging spouse or sibling. In some families, abuse continues a long-standing family pattern. In others, the older adult’s need for constant care can cause a caregiver to lash out verbally or physically. In some cases, especially in the middle to late stages of Alzheimer’s disease, the older adult may become difficult to manage and physically aggressive, causing harm to the caregiver. This might cause a caregiver to respond angrily.
But no matter who is the abuser or what is the cause, abuse and neglect are never acceptable responses. If you feel that your family member is in physical danger, contact the authorities right away. If you suspect abuse, but do not feel there is an immediate risk, talk to someone who can act on your behalf: your parent’s doctor, for instance, or your contact at a home health agency. Suspected abuse must be reported to adult protective services.
Tom and Rosemary Ryan’s story parallels the story of Down syndrome these past 59 years.
Not only has the Orland Park couple lived the joy, challenge and learning curve that accompanies raising a child with special needs, they’ve dedicated their lives to pioneering change in governmental support, educational opportunities and societal views.
“A lot has changed over the years,” Rosemary said. “We’ve come a long, long way.”
Like many parents of special needs children, love thrust them into the world of advocacy. When there was no preschool for their son, Rosemary started one. When the concept of housing adults with Down syndrome in group homes instead of institutions was proposed, they jumped on board — landing smack in the center of a national debate and garnering the attention of ABC-TV’s “Nightline” with Ted Koppel.
And, now, as their oldest son endures perhaps the cruelest of characteristics often associated with his condition — accelerated aging — the Ryans are again at the forefront of the discussion.
Kevin Ryan is 59 but a checkup last spring revealed “he’s more like going on 70,” Rosemary said. “He’s gonna pass us up.”
Raising a child with Down syndrome is “perpetual parenthood,” Rosemary said, “if you are committed to wanting the best for them.”
Now in their 80s, the Ryans, who live at Smith Crossing retirement community, are simultaneously discussing end-of-life care for themselves and for their son.
Into the light
When Kevin Ryan was born Aug. 4, 1959, Tom and Rosemary felt the way many parents of newborns with special needs felt back then — alone. The support and advice that today are showered upon parents of babies born with Down syndrome was nonexistent then, Rosemary said.
Three pediatricians examined Kevin and agreed he had the condition characterized by an extra chromosome.
“They called it ‘Mongolism’ back then,” she said.
In those days, there were no prenatal tests to predict it, nor any way to prepare for it, she said.
“We didn’t expect an anomaly with our first baby, but it was meant to be,” Rosemary said.
The “new” thinking at the time was that the couple should take their newborn home, she said.
And that’s where the advice ended. Rosemary could find only one very dated guidebook at the library that she said was so negative, “I couldn’t get past page three.”
So she relied on her instincts and on training she’d received en route to becoming a pediatric nurse to get through the early years, she said.
“And we just kind of forged ahead,” she said.
The Ryans went on to have three more children, with their second son quickly passing his older brother developmentally. Rosemary gave up her nursing career to stay home and care for the children.
Testing had revealed that Kevin was on the border of EMH (educable mentally handicapped) and TMH (trainable mentally handicapped), she said.
Those terms have fallen from the lexicon, along with “Mongolism,” but what Kevin’s score meant, Rosemary said, was that he’d struggle in an academic program, but likely excel in a training setting. They chose the latter.
“Back in 1962,” she said, “public schools had EMH but no TMH.”
The Ryans were living in Jacksonville, Ill., then and Rosemary and another mom decided to start a school in a nearby church. They set up an advisory board with a host of professionals and townspeople, and hired two teachers.
Kevin attended for a year and a half, until Tom, who had given up teaching high school to work at State Farm Insurance, was transferred to the south suburbs.
Changing laws, changing attitudes
While Rosemary had been organizing a school in central Illinois, other parents were doing the same in Chicago Heights. In 1965, after the Ryans moved to Park Forest, Kevin began at privately run Happy Day School.
Ten years later, Public Law 94-142 mandated public school be available to all kids ages 3 to 21 (later extended to age 22), and Kevin transferred to SPEED Development Center in Park Forest.
SPEED, Tom said, “was the creme de la creme” and Kevin continued there until he turned 21 and returned to Happy Day for adult workshop.
The end of public school life often is a time of great concern and confusion for parents of children with special needs, Tom said, particularly if they haven’t planned ahead.
“Some people choose to have their adult kids just stay home,” Tom said, but that can lead to problems if the parents’ health begins to fail.
Kevin continued attending workshop at Happy Day and living with his parents until 1995.
Down syndrome is the most commonly occurring genetic condition, said Linda Smarto, director of programs and advocacy at the National Association for Down Syndrome in Chicago.
Approximately 6,000 babies with the condition are born each year in the United States, Smarto said. That translates to 1 of every 730 live births, a number that seems to be on the rise, she said.
“When my daughter was born 24 years ago, the number was 1 in 1,200,” she said.
“Eighty-five percent of (these) children are born to moms 35 years old and younger,” she said. “So it’s a great myth that (Down syndrome) only occurs to parents who are older.”
While individuals with the condition develop more slowly at the beginning of life, the end of life seems to rush at them. Not everyone with Down syndrome is afflicted with premature aging, Smarto said, but there does seem to be a precursor to that and Alzheimer’s disease.
“Down syndrome, (researchers) say, will find the cause for Alzheimer’s because (scientists are) really pushing to find some sort of a cure and learn why this is happening,” Smarto said.
The phenomenon can be heartbreaking for loved ones already wrestling with end-of-life care decisions. What to do with aging children who have Down syndrome is a huge concern, Smarto said, especially if the individual has medical issues.
But, she added, it’s the same concern for anyone with a disability. And it’s the same for elderly adults who don’t have a living child to help care for them, she said.
If a sibling or other family member isn’t available to assist, an individual may be placed in a state-run home. “Our goal is to have our individuals either live independently or with a family member,” she said.
Smarto said most of NADS referrals come from the south suburbs.
“We don’t really know why the occurrence of Down syndrome is a little more prevalent there. (Advocate) Christ delivers about 4,000 babies a year and we get a lot of referrals from there. But it’s also a higher level hospital that sees patients who need special care. And they have a special care nursery,” Smarto said.
“But it is interesting the statistics (when compared) to (Northwestern Medicine’s) Prentice (Women’s Hospital in Chicago), which delivers 10,000 babies a year and the commonality is not as much,” she said.
Smarto said much of the evolution of Down syndrome inclusion is owed to parents like the Ryans, moms and dads who’ve helped usher in change by volunteering, serving on boards and doing the work. Many of the improvements in the special needs community, she said, is credited to parental advocacy.
In the early 1990s, a group out of Galesburg came to Happy Day, now called New Star Services, and told parents they were going to start building group homes in neighborhoods, Tom recalled.
It was a new concept sweeping the country, he said, and they had found a lot on Broadway in Chicago Heights.
The Ryans were among several parents who signed on. At the time, Kevin was 31 and eager to get out on his own, Rosemary said, because his younger siblings had flown the coop.
But the city of Chicago Heights fought the idea and became “the test case for the nation,” she said.
“Chicago Heights took on the federal government,” she said. “Who do you think won?”
The battle introduced many to the acronym NIMBY (Not in My Backyard) and made national headlines. A photographer from U.S. News and World Report visited the Ryan’s home and a picture of Kevin ended up on “Nightline,” Rosemary said.
The city lost and had to pay the agency and the prospective residents, she said.
“Kevin got his check for $1,000 and we took him to Hawaii,” Rosemary said.
In 1992, the Adult Down Syndrome Clinic opened in Park Ridge. Run by NADS, the facility introduced the Ryans to Dr. Brian Chicoine, and what Rosemary calls “a world of support.”
Rosemary calls Chicoine’s book, “The Guide to Good Health for Teens & Adults With Down Syndrome,” the “Dr. Spock for parents of kids with Downs.”
Kevin continues to see Chicoine — these days for premature aging symptoms. His hearing is declining, he’s having trouble with his teeth, he walks with a cane, Rosemary said.
In 2012, fearing their son might encounter early aging issues down the line, the Ryans moved Kevin out of the group home and into Good Shepherd Manor in Momence.
“We got to thinking, if he was left in a group home environment and his physical or mental health declined, their only option is to put him in a (Medicaid) nursing home,” Rosemary said. “We didn’t want that.”
Good Shepherd Manor, Tom said, is the closest thing to a forever home. It serves 125 adults, many of them aged.
“They’re committed to lifetime care, no matter what happens,” Rosemary said. “If he gets dementia, if hospice is needed, they’ll take care of it.”
Now, Rosemary said, Kevin’s lifestyle mimics that of his parents. “We have every level of care we’re ever gonna need here (at Smith Crossing), and so does he there,” she said.
The Ryans’ other children are scattered from Maine to Hawaii, with Kevin’s closest sibling living 1,000 miles away, so, Rosemary said, “If Kevin outlives us, we’d like him to stay at Good Shepherd because that’s what he’s familiar with.”
Raising Kevin has always been about choosing the best path for him, Rosemary said.
Special needs can mean special, or additional, considerations, she said, but the condition can also bring a special kind of joy.
Their son has had many positive life experiences, including participating in Special Olympics, attending Prairie State College, serving as a church usher and holding several jobs in the community.
“He’s truly been a joy,” Rosemary said. “But it is hard watching him age. You almost forget you’re a senior citizen because you’re taking care of a senior citizen.”
Kevin, she said, “is still funny. He’s still a character. He still steals the limelight at family get-togethers.”
And, Tom said, a quiet day is when Kevin calls only two or three times on his cell phone.
“In a way,” Tom said, “he is sort of the person who ties our family together.”
Although Dr. John Langdon Down first identified the condition marked by an extra chromosome in 1866, it wasn’t until the 1970s that “Mongolism” was renamed Down syndrome.
“Some people,” Rosemary said, “like to call it ‘up syndrome,’ because the people who have it are more up than down.”
My hospice patients were dying, but they still longed for fresh air and birdsong.
By Rachel Clarke
A furrowed brow and flailing arms were all we had to go on. The grimacing, the way the patient flung his head from side to side — all of it signified an unvoiced anguish. We tried talking, listening, morphine. His agitation only grew.
All cancers have the power to ravage a body, but each assails in distinctive ways. One of the particular cruelties of a cancer of the tongue is its capacity to deprive a person of speech.
Some of us thought he must be suffering from terminal agitation, a state of heightened anxiety that sometimes develops as the end of life draws near. But the junior doctor on the team, Nicholas, was convinced that we could unlock the source of our patient’s distress and volunteered to stay behind in the room.
Nicholas reappeared about an hour later. “You can understand his speech,” he announced. “You just have to really listen.”
When I re-entered the room, the reclining chair that the patient — a tall, angular man in his 80s — had been thrashing around in had been turned to face out onto the garden and the double doors were open wide. Now he sat calmly, transfixed by the trees and sky. All he had wanted was that view.
For a decade, I have worked as a doctor in Britain’s National Health Service. We are an overstretched, underfunded health service in which too few doctors and nurses labor with too few resources, struggling to deliver good care. Burnout among staff is endemic, so much so that it threatens to stifle the kindness and compassion that should be the bedrock of medicine.
But then there are the moments when helping someone is easy: Just nature is enough.
Before I specialized in palliative care, I thought the sheer vitality of nature might be an affront to patients so close to the end of life — a kind of impudent abundance. And yet, in the hospice where I work, I am often struck by the intense solace some patients find in the natural world.
I met Diane Finch, a patient, in May, on the day her oncologist broke the devastating news that further palliative chemotherapy was no longer an option. She was 51. From that point on, her terminal breast cancer would run its natural course, medicine powerless to arrest it.
“My first thought, my urge, was to get up and find an open space,” she told me on that first meeting. “I needed to breathe fresh air, to hear natural noises away from the hospital and its treatment rooms.”
At first she fought to preserve herself digitally, documenting every thought and feeling on her computer before they, and she, were lost forever. But one day, as she was typing frantically, she heard a bird singing through her open window.
“When you come to the end of your life, you get the sense that you don’t want to lose yourself, you want to be able to pass something on,” she told me later. “When I had whole brain radiotherapy, I felt as though something had dropped out, as if everything I said needed to be saved. It was all running away from me.
“Somehow, when I listened to the song of a blackbird in the garden, I found it incredibly calming. It seemed to allay that fear that everything was going to disappear, to be lost forever, because I thought, ‘Well, there will be other blackbirds. Their songs will be pretty similar and it will all be fine.’ And in the same way, there were other people before me with my diagnosis. Other people will have died in the same way I will die. And it’s natural. It’s a natural progression. Cancer is part of nature too, and that is something I have to accept, and learn to live and die with.”
Ms. Finch recorded a song based on the peace she felt listening to the bird song, and it was enough to bring her some relief from what — up to that point — had been almost feverish efforts at self-preservation.
Another patient, whom I admitted in July with about a week to live, was mostly concerned that I keep the windows open, so that he could “keep on feeling the breeze on my face and listening to that blackbird outside.” I rushed to make sure of it.
Shortly before his death from pancreatic cancer at 59, in the 1990s, the British playwright Dennis Potter described the exaltation of looking out at a blossom that had become the “whitest, frothiest, blossomest blossom that there ever could be” from his window.
“Things are both more trivial than they ever were, and more important than they ever were, and the difference between the trivial and the important doesn’t seem to matter. But the nowness of everything is absolutely wondrous,” he told an interviewer.
People often imagine hospices to be dark and dismal places where there is nothing left to experience but dying. But what dominates my work is not proximity to death but the best bits of living. Nowness is everywhere. Nature provides it.
Dan Kuester and Kirsten Farnsworth had only been married for two months when Kirsten was diagnosed with cervical cancer. Between aggressive treatments over the course of the next five years, Kirsten and Dan built a life together: they finished graduate school programs, traveled, and adopted a rescue dog they named Sputnik.
But the cancer came back in the summer of 2017, and the couple knew it was time to accept facts: At 32, Kirsten was going to enter the last phase of her life.
They decided to hire an end-of-life doula — a death doula or death midwife — to help them through the process.
“I’ll admit neither of us was incredibly familiar with the idea of an end-of-life doula,” Kuester says. “We didn’t have any kids so we had no familiarity with doulas as far as midwives go.”
The term doula is often associated with birth, a Greek term that loosely translates to a woman helping another woman. Birth doulas are trained professionals who provide mothers with emotional, physical and informational support before, during and just after birth.
Death doulas do the same, just at the end of life instead of the beginning.
Across the country, programs are cropping up that teach people how to become end-of-life doulas, holistic caregivers who support those in the process of dying (and their loved ones) with a variety of services, from practical tasks like creating a plan for the final days of a client’s life, to the psychological work of internal and external forgiveness and acceptance. This is not hospice care, but something supplemental; while hospice care keeps patients comfortable with medication, provides relief through treatments and assesses ethical medical issues with the family, death doulas are more like traveling companions, there to walk with clients and families toward something wholly unknown.
An end-of-life doula can help with cleaning or cooking, run errands or just be physically present for a client to talk to about things loved ones just aren’t ready to hear — like the reality that the end is coming.
Boulder is home to one such end-of-life doula program. Tarron Estes founded the Conscious Dying Institute after a career working as a transformational learning consultant in health care systems showed her what it looks like to die in the United States.
“When I realized [health care systems] really weren’t talking about [death], I had a very strong vision: You will change the way people are cared for in senior communities,” Estes says. “It made sense to me that if I wanted to change how death is happening in America I would do what I do best, which is work with individuals and help them experience personal transformation that also gives them a career in end-of-life care and healing.”
Through the Conscious Dying Institute, students can complete several end-of-life education programs, including a two-phase, eight-day onsite Sacred Passage Doula Certificate Program.
Nicole Matarazzo was one such student. She went on to become a doula for Kirsten Farnsworth in her last months.
Matarazzo had spent most of her professional life working directly with death; after college as a child life specialist in pediatrics working with children who were born HIV positive, then with patients receiving bone marrow transplants.
She went on to teach kindergarten and become a massage therapist, then eventually, after having children, went to work in health care at elementary schools in Boulder, where she says her role was as much about providing emotional support to kids as it was about caring for illness and injury.
About four years ago, a friend of Matarazzo’s was diagnosed with cancer for the second time, and she asked Matarazzo to care for her in her remaining days.
For a year, Matarazzo walked through the last phase of her friend’s life with her. Without question, it was emotionally the hardest work Matarazzo had ever done.
“A few hours after we had called hospice to come and be with us, [a hospice worker] asked me, ‘Where did you get your training?’” Matarazzo says. “It prompted me to wonder: ‘Why did you ask me that? How are people dying in this town?’”
The answer from the hospice worker: “Often alone and scared.”
“I heard that as a message loud and clear,” Matarazzo says. “I knew at some point I would figure out how I was going to be a player in that arena, so that there are less people dying afraid and alone.”
Trends in American lifestyles have raised the risk of dying alone: the divorce rate for 55- to 64-year-olds doubled from 1990 to 2015, according to the National Center for Family & Marriage Research, and once divorced, people are remarrying less often. One study found that nearly 7 percent of U.S. adults 55 and older had no spouse or biological children, and that number is predicted to surge over the next 50 years.
Perhaps, then, it’s no coincidence the death doula movement is flourishing.
“I think it’s been slowly beginning, quietly, kind of a grassroots movement,” says Jeri Glatter, vice president of the nonprofit International End of Life Doula Association (INELDA) based in New York City.
“I think a big part of [the rise of the deal doula movement] is the people who said in the ’80s that they did not want to give birth a certain way — that they didn’t want to be put in a white hospital and have a white male say, ‘You’ll go to sleep, and you’ll wake up, and I’ll hand you a baby’ — I think those same people are turning 70 and 80 now, and there’s an awareness that they don’t want to die the same way; they don’t want to be disconnected from what’s happening.”
Glatter, like Matarazzo, came to her work after caring for a loved one at the end of their life. The experience, somewhat counter-intuitively, filled Glatter with a “sense of joy and enlightenment.” A friend said she should consider becoming a death doula.
“I Googled the term, as per my friend’s direction, and I found the Open Center in New York City,” Glatter says. “It was the only thing listed; one Google response to ‘death doula’ [at that time].”
At the Open Center’s Art of Dying Institute program, Glatter met Henry Fersko-Weiss, a clinical social worker who created the first end-of-life doula program in the U.S. at a hospice center in New York City in 2003. Fersko-Weiss had studied the work of birth doulas, not because he was interested in becoming one, but because he saw the parallels between supporting people at the beginning of life and supporting them at the end of life. After more than a decade of moving from hospital to hospital teaching his volunteer-based end-of-life doula program, Fersko-Weiss dedicated himself fully to the cause and opened INELDA in 2015.
“Our training and our model of care has always been based in this volunteer, being-of-service format,” Glatter says.
While INELDA teaches courses on business development for those who want to professionally practice end-of-life doula work, Glatter says these courses always focus first on providing ways to make care accessible to those who need it, through sliding scale fees, pro bono work and other forms of payment that may be available to people, like trading services.
“We focus first on what brought [a student] to this work and the meaning behind the work, [their] intentions with this work,” Glatter says. “The term ‘calling’ is probably the most common term we hear from people who take training and business development courses through INELDA. We try to keep that in the forefront of the conversation. After that there is the understanding that if you are approving a service and someone is in a position and wants that support through a higher practitioner, there’s nothing wrong with being paid for that.”
In early 2017, Fersko-Weiss told USA Today that trained and certified non-volunteer end-of-life doulas typically cost between $40 and $100 per hour, with flat rates often applied during a patient’s final days so that round-the-clock care can be provided. End-stage doula services, he said, range from $1,200 to $4,000.
Glatters says that she, Fersko-Weiss and INELDA president Janie Rakow have never charged for their work.
Some doula training organizations are focused solely on training volunteers, like the nonprofit Doula Program to Accompany and Comfort in New York, which has been operating since 2001. Each year the program accepts between 13 and 15 volunteers from an application pool of 300 or so. These volunteers go into hospitals and meet with patients at least once a week through their dying phase.
To executive director Amy Levine, end-of-life doula work is about “lending our humanity.”
“We can do this for each other as human beings,” she says. “Even just 15 minutes together every week. It changes both lives.”
Nicole Matarazzo says determining appropriate payment for her services is an ongoing learning process, and she works to provide as much pro bono work as she can.
“My biggest challenge as a death doula is the exchange of money because this work to me is so sacred,” she says. “Having the conversation around what I do makes me nervous because there’s integrity and accountability around what I do.”
Becoming a certified doula can be pricey as well. The End of Life Doula Certificate offered at the Conscious Dying Institute costs $2,995 and provides nurses with 66 Continuing Education for Nurses (CNE) credits. At INELDA, it costs $750 to attend a two-day training, $100 for a current membership in INELDA, $35 to request a certification packet, and a $75 application fee, bringing the total to $960.
Currently there is no regulatory body that standardizes practices around end-of-life doula work, but most programs offer similar courses structured around providing emotional and spiritual support, assisting with unfinished business, creating visualizations, deciding how the space will look and feel at the time of death, designing rituals, developing a vigil plan and any other nonmedical gaps in care. There’s no regulatory agency for birth doulas, and most end-of-life doulas feel such an agency might limit access.
“As soon as hospice became a Medicare benefit it got whittled down year after year until it became so hard for people to get what they need,” says Tarron Estes of Boulder’s Conscious Dying Institute. “What I hope is that my work goes more and more into health care systems so that people who are on the front line can have this kind of training, so that they are supported to be who they are and they can stand for wonderful, beautiful deaths. I want CNAs to have end-of-life certifications. I want systems like Kaiser to work with me to figure out how to do a training for their employees so … more of this work can get in the minds, bodies and hearts of people that are called to do this work.”
The interest in improving end-of-life care is even beginning to infiltrate medical schools, where students are required to attend a birth, but not a death. Atul Gawande, a surgeon in Massachusetts, is leading the charge to improve education about end-of-life care at Massachusetts’ four medical schools: Harvard University, Boston University, Tufts University and the University of Massachusetts Medical School.
One thing seems certain: the need is there.
When Kirsten Farnsworth passed on May 30 of this year, her husband Dan Kuester helped his mother-in-law wash Kirsten’s body with essential oils, an ancient ritual that Nicole Matarazzo, as their doula, suggested. Kuester said that of all the planning Matarazzo helped with — visualizations, planning for the vigil and emotional support — washing the body gave him the most peace, the closest thing he can describe as “closure” on an experience that never truly ends.
“Nicole, I think partly by virtue of the fact she could come in and not be responsible for Kirsten’s physical health, it made it easier to trust her in an advisory role,” Kuester says. “She also brought a mindful and compassionate and extremely calming presence. I think both Kirsten and I felt much calmer on days when we would have meetings with Nicole, being able to plainly state what it’s like, some of these things that were in front of us that we weren’t completely sure of how it was going to go. She did a great job of showing us how it was, how these experiences were going to go and what options we have to impact the ways the experience goes.”
Death, reminds Tarron Estes, is not a medical event.
“It’s just sad because we don’t know how to be with death anymore,” she says. “Thank God we’re all beginning to think about how to do this better because none of us, myself included, people who have had the benefit of transformational work and sustainable energy and sustainable lifestyles and all the bells and whistles that a Boulder person and people who are conscious have had all their life, even most of us don’t think about it and don’t know what else there is to do. Believe me though, we’re going to be wanting to know about it.”
In 1998, Cindy Spence watched in horror as her hospitalized, cancer-stricken father-in-law was denied the massage he desperately requested. Then and there, the Texas woman’s career path became clear.
“He entered a pain-filled and despondent state in which the only thought that gave him any pleasure at all was to have a hospice therapist come to his hospital room,” Spence recalls. But in 1998, massage therapy was contraindicated for cancer patients. The thinking was that massage would spread cancer cells or might break a tumor.
“That just felt wrong to me,” Spence says.
Now Spence is one of hundreds of hospice massage therapists nationwide, working at the T. Boone Pickens Center at Faith Presbyterian Hospice in Dallas. MK Brennan, president of the Society for Oncology Massage, estimates that at least 250 U.S. hospitals provide hospice massage, and the number is growing.
“Ever since the 1940s and ’50s, we’ve been working to establish ourselves as health care providers rather than adult entertainers,” Brennan says.
This perception had changed little when massage therapist Irene Smith basically launched the hospice massage field in 1982. Nor had the other part of the equation — hospice care — caught on.
“You had two topics within the field that have been very scary to the general public,” Smith says. “Massage was not a mainstream modality of care for many, many years, and death has never been a dinner-table conversation until the past decade.”
It didn’t help that, at least literally, we were not a “touchy-feely” society.
“Touch has been very misunderstood,” Smith says. “Touch is in the forefront of neuroscience, with more information coming to the mainstream public in relation to the positive outcomes of being touched. More and more people are becoming aware of its benefits from birth to death.”
That’s why Smith founded the influential California-based Everflowing program, whose mission is “to teach mindful touching and the practice of therapeutic presence as opportunities to recognize and express tenderness in caregiving.”
The Public Presses the Issue of Hospice Massage
Integration of massage at medical facilities often requires public demand. As hospice massage therapists toiled as freelancers and volunteers, patients and their families saw the benefits of the practice and increasingly have come to insist on it.
“We have seen a definite acceptance and growth for requesting massage,” says Meg Robsahm, an independent hospice massage therapist in Rochester, Minn. “We have also seen an increase in hospice companies adding it to their service menus simply because of demand.”
“I started as a volunteer. The patients were beginning to ask for this, so all the big [facilities] realized they couldn’t provide coverage with just volunteers,” Herman says. “Insurance wouldn’t cover it, so we had to come up with donations, philanthropy or pulling it out of little corners of the budget.”
Still, Brennan says, staff positions for hospice massage therapists remain relatively limited, and there are few signs that insurers will start including it in their standard coverage. On the contrary, independent massage therapists are strongly advised to buy liability coverage to work in hospice care.
Touching in Many Ways
At least for now, advocates for hospice massage have research on their side.
According to the AMTA, a 2014 study focused on integrating massage therapy into palliative care found “statistically significant changes in pain, anxiety, relaxation and inner peace of patients, decreasing both pain intensity and anxiety while increasing the patients’ sense of relaxation and inner peace.” (Palliative, or comfort, care is appropriate for people of any age at any stage of a serious illness. Hospice care is generally for those who have six or fewer months to live and who are no longer receiving active treatment.)
The study’s results are why these therapists recognize that their role is, as Smith puts it, “to comfort — not cure — to validate, to honor, to soothe and to respect.”
Other therapists often point to the wide-ranging, even holistic nature of their work.
“The dying process involves physical, spiritual, mental and emotional pain,” Spence says. “RNs can work with the physical pain, chaplains with the spiritual pain and social workers with the mental and emotional pain. I feel that massage and music therapy are the only ones that treat all of those modalities.”
Getting the Family Involved
Smith and her peers strive to have family members present during hospice massage sessions, not just to observe but to participate — to learn how to be gentle with touch.
“Families sometimes have no way to connect with their loved ones, and massage can offer that connection,” Robsahm says. “It can bring a sense of peacefulness in the end stages.”
Families are generally relieved that their loved ones are finding relief and relaxation.
“Especially as someone is close to death — say 48 hours — if I’m in the midst of that family and they’re interested, I will have them sit next to me and have them do what I do,” Robsahm says. “At a certain point, my time will be up, and they will get to be the person to hold their hand, stroke their neck, put oil or lotion on their feet.”
The patient and the family are not alone in reaping something profound out of the experience, according to Spence.
“I have made a commitment to find every ounce of joy,” Spence says. “I knew when I came in that there would be a lot of sorrow, but I didn’t know I would laugh with patients and their families as much as I have.”
Or, as Robsahm puts it: “It moves beyond physical contact. We touch people’s bodies, and in the end, we touch them in their soul.”
A pregnant mother’s 20-week ultrasound often brings feelings of elation and anticipation as she learns the baby’s sex or sees the baby move in her belly.
But when that ultrasound shows a heart defect in her unborn child that will require multiple surgeries and could cause learning difficulties, necessitate a heart transplant, or even lead to an early death, everything changes for her and for her family. Expectations of the future start to change.
Children with complicated medical problems such as heart defects, severe seizure disorders or cancer need care from multiple specialists over their lifetime. As specialists in pediatric cardiology and pediatric intensive care medicine, we have seen too often that one key group — the palliative care team — is often not included.
One reason for this is that many people inaccurately think of palliative care as only care for the dying.
The National Consensus Project for Quality Palliative Care describes palliative care as an interdisciplinary approach to “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.” There is no mention of dying, death or end-of-life care.
Important legislation under consideration now seeks to expand opportunities for interdisciplinary education, training and research in palliative care. The Palliative Care and Hospice Education and Training Act recently passed the U.S. House of Representatives and is headed to the Senate. This legislation will support educational efforts that inform patients and health-care providers about the benefits of palliative care in supporting individuals with serious illness.
People with complicated medical problems and serious illness need medical specialists. Just as heart doctors treat heart problems and lung doctors treat lung problems, palliative care treats the suffering that results from serious illness.
Sometimes the reasons for suffering are obvious, as with a cancer patient’s excruciating bone pain or unending nausea. Palliative care providers use both medications and less conventional treatments, such as acupuncture or music therapy, to alleviate difficult-to-control symptoms.
Other times, suffering from serious illness can’t be seen easily. A new study published in BMJ (originally the British Medical Journal) found that 20 percent of patients with cancer have depression and 10 percent have anxiety. Often unnoticed or sometimes ignored, these complications can decrease survival.
To be sure, suffering comes in many forms – physical, emotional, spiritual. Many contend that physicians should focus on things such as physical bodily pain, and leave more existential suffering to chaplains or other religious figures. That is why palliative care requires an interdisciplinary team that includes social workers, chaplains, music and art therapists, nurses, physicians and others.
But palliative care providers can only help if they are invited to participate. Some physicians and parents may avoid introducing palliative care because they feel it is tantamount to “giving up hope.”
Yet, in some cases, palliative care may help extend life. In a study in China of adults with metastatic non–small-cell lung cancer, those who received early palliative care lived longer than those who received standard cancer care.
Such improved outcomes are not limited to the patients themselves. A new study published in Cardiology in the Young showed that mothers of children with a serious congenital heart defect (called hypoplastic left heart syndrome) who received early palliative care had less anxiety and improved family relationships compared to mothers who received regular care.
While some physicians may resist involving palliative care, many patients report they are open to the idea. A recent study of oncology patients published in the Journal of American Medical Association network showed, “very few patients or parents in this study expressed negative attitudes toward early palliative care.”
Of course, many patients with serious illness may not need palliative care. Some health-care providers might want to manage all aspects of their patients’ care. Certainly, all physician should have skills to treat difficult symptoms, address emotional challenges, and conduct difficult conversations. But as decision making and suffering become more and more complicated, involving clinicians with specific expertise can make a huge difference.
Unfortunately, access to quality palliative care services is lacking. One-third, or 802 U.S. hospitals with 50 or more beds, report no palliative care services. The Center to Advance Palliative Care gave one-third of states a grade of C or D based on inadequate access to palliative care.
To improve access to palliative care, more health-care providers need this training. According to the data from the National Palliative Care Registry, 1 to 1.8 million patients who could benefit from palliative care services, are not receiving it.
Just 140 existing palliative care training programs graduate only 360 physicians yearly. This is nowhere near enough providers to meet this massive unmet need. And one study published in Palliative Medicine shows that the need will double by 2040.
Fortunately, clinicians and families don’t need to participate in formal training programs to access palliative care education. The National Institutes of Health has a campaign to improve understanding for both patients and providers.
The American Academy of Hospice and Palliative Medicine website provides links to research, videos, training options, and more. The Center to AdvancePalliative Care provides tools, training, and technical assistance to build and sustain palliative care in all health care settings.
Palliative care must not be an afterthought, or a consideration after all other possibilities in care are exhausted. It is urgent that palliative care be accessible to everyone regardless of age at the onset of medical treatment. That way patients can be offered the best possible care and outcomes.