“Death is inevitable. My life span is ever decreasing. Death comes whether or not I am prepared.” These are three of the nine contemplations on death written by Buddhist teacher Atisha — and Alua Arthur reads them to clients during death meditations. As a death doula and owner of Going With Grace, an end of life and death care company, Arthur (who graduated from law school before shifting to work in the death industry) facilitates these sessions to help people who are uncomfortable with the idea of death or dying.
“Death meditation is an opportunity for people that are struggling with some fears around death and dying to confront those fears head-on,” Arthur says. “It’s not for the faint of heart. It’s an opportunity to really think about the body’s eventual decline, and to go there to see what the discomfort is, so that we can then talk about that and process that. It’s intended to soften the fear around death.”
And, true to her claim, Arthur’s work is meant to soften fears around death. “Doula” is a word derived from a Greek term meaning, “women who serve.” As a death doula, she works with clients to plan for the final stage of their lives, holds space to support them emotionally through their deaths, and ensures their wishes are met.
Arthur developed a nine-part “Advanced Care Directive” that allows clients to list how they’d like to be cared for in the event of terminal illness. It includes everything from personal grooming preferences to thoughts on life support. By filling out Arthur’s document, a client can clearly state how they’d like their social media to be handled in the event of their death and whether they’d prefer to be embalmed, buried in a bio-urn (a seed pod for ashes that nourishes the earth and grows into a plant), or anything in between. She’s helped prepare for end of life with healthy millennials, large family groups, and even her own father.
Of course, when it comes to her own funeral, Arthur, who thinks about death “all day, every day” knows exactly what she wants. If possible, she’d prefer to die outside, at sunset. And she wants to be buried in a pink or orange raw silk shroud. Her funeral will be a party filled with music (Michael Jackson is a must on the playlist). She’d like her jewelry — an extensive collection of bangles and big earrings — hung on trees and for attendees to take the pieces they like. This tendency toward bright colors, generosity and liveliness mirrors Arthur’s sensibility in life. Her smile is contagious. Arthur’s yellow and magenta and green African-print frocks are a far cry from the drab, stereotypical wares one might associate with the death industry. In fact, there’s nothing grim about her or the work she does.
Yes, Arthur’s death consultations can be heartfelt and tearful to be sure, but, as she puts it, “death can definitely be funny.” And so, she approaches each conversation with a seemingly effortless but effective sense of levity. Arthur is part of a new trend in the death industry that favors pre-planning, personalization, and, ultimately, the normalization of death as a topic of conversation. In Arthur’s vision of the world, everyone over the age of 18 has an end of life plan and is willing to talk openly about death, she says.
“I think people don’t talk about death, because we’re not really comfortable with it,” she says. “Yet, whenever I talk about my work, people always talk to me about death… I think my work gives people permission to talk about this thing that we all want to talk about anyway, yet we’re just not doing.”
So, while many of us may not all be ready to recite the nine contemplations just yet, we can take comfort in the words Arthur uses to signs off on all of her Advanced Care Directives: “Yes, one day you and I will die, but before that day, let us live.” When she says those words out loud, she can’t help but smile.
Care at the end of life should address all of the important elements that play a critical role in ensuring a positive end-of-life experience for patients and families. Therefore, quality end-of-life care extends beyond managing physical pain to include psychosocial and spiritual needs.
Not all long-term care professionals carry the same understanding of the issues.
Frequently, nurses serve as advocates to support patients and families in making care decisions based upon their goals and values. Ideally, physicians, nurses and other team members work together to create an atmosphere of care and compassion in accordance with patient and family wishes.
Although hospice and palliative care both aim to deliver quality holistic care, there are key differences.
The dimensions of hospice care
Hospice is the model for quality compassionate care for people facing a life-limiting illness. Hospice clinicians focus on pain and symptoms, and attend to the patient and family’s emotional and spiritual needs. Hospice is offered at a patient’s residence, such as their home or nursing home, or, if needed, in a hospice facility.
Hospice programs utilize an interdisciplinary team (IDT) approach to plan the care needed by patients and their families during the final weeks and months of life. The IDT is comprised of nurses, chaplains, social workers, physicians and medical directors, hospice aides, volunteers, bereavement specialists and other clinicians who develop and implement a plan of care that is formulated to relieve anxiety and suffering during the final months and weeks of a patient’s life. This approach allows the team to address physical, emotional, spiritual and social concerns that arise with advanced illness.
Hospice is available to people with all types of conditions and diseases, and focuses on comfort — not cure. Hospice provides care for the “whole person,” including physical care, counseling, spiritual needs, drugs, equipment and supplies related to the conditions that comprise the terminal prognosis. It also supports family caregivers, including bereavement support for up to a year after the patient’s death.
Hospice care is reserved for people at the end of life who meet Centers for Medicare & Medicaid Services eligibility requirements and elect a comfort approach to care. The Medicare Hospice Benefit (MHB) requires that two physicians certify that a patient has less than six months to live if the disease follows its usual course. However, if a patient is still alive after six months, he or she can continue to receive hospice services if he or she meets eligibility requirements and demonstrates signs of progressive decline.
When a patient elects hospice, they sign off their Medicare Part A (hospital insurance) and enroll in hospice under the MHB. From that point on, hospice covers all services and care related to the terminal diagnosis and related conditions through Medicare, Medicaid and most commercial insurance.
The hospice IDT, together with the patient’s attending physician, is responsible for determining the plan of care. Under terms of the Medicare Hospice Benefit, the hospice agency is responsible for the plan of care and may not bill the patient for services. All costs related to conditions that affect the terminal prognosis are paid from a per diem rate that the hospice agency receives from Medicare. This per diem rate includes all drugs and equipment, nursing, social service, chaplain visits and other services deemed appropriate by the hospice agency. Care and medications not related to the terminal illness or related conditions continue to be paid for through original Medicare.
Distinctions of palliative care
The biggest differences between hospice and palliative care revolve around where the patient is in their illness related to prognosis, their goals/wishes regarding curative treatment, and how palliative care is financed.
Palliative care focuses on relief from physical suffering and caregiver burdens for individuals who are living with a chronic disease that may or may not be terminal, addressing their physical, mental, social and spiritual well-being. Atul Gawande recently defined palliative care “as the field devoted to providing people with serious life-limiting illness with expert care that serves their goals for quality of life, not just quantity of life.”
Similar to hospice, palliative care utilizes an interdisciplinary approach with highly trained professionals, including physicians, nurse practitioners, nurses, social workers, chaplains, and other disciplines.
Palliative care can be offered to people of any age, without restriction as to disease or prognosis. It may be appropriate for anyone with a serious, advanced illness, whether he or she is expected to recover fully, live with chronic illness for an extended time, or experience disease progression. Unlike hospice, patients receiving palliative care may continue to receive aggressive treatments, including life-prolonging therapies.
Conditions appropriate for palliative care include cancer, congestive heart failure, end stage renal or liver disease, chronic obstructive pulmonary disease, and dementia, among others. While palliative care is often appropriate earlier in the disease trajectory, referrals to palliative care clinicians are often not made until late in the disease process.
Palliative care focuses on relieving symptoms, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and depression. Palliative care providers also support patients in carrying on with daily life so that they can tolerate medical treatments. In addition, patients receive support that empowers them to have more control over their care by improving communication so that they can better understand their choices for treatment. Helping patients and their caregivers coordinate care across care settings is a hallmark of palliative care.
Financing palliative care
Unfortunately, palliative care programs struggle financially because there is no reimbursement code specifically for palliative services and Medicare does not reimburse for interdisciplinary care management. Hospital-based palliative care is paid by the health system with some fee-for-service (FFS) billing for physician services. Medicare Part B covers physician and nurse practitioner (NP) fees for outpatient care delivered in the community or in clinics. Therefore, most community-based palliative care programs utilize NPs and physicians for home visits.
Other disciplines, such as nurses and social workers cannot bill Medicare for palliative home visits. Palliative care is also paid for through flexible bundled payments under Medicare Advantage, Managed Medicaid, ACOs and other commercial payers.
While Medicare doesn’t have a palliative care benefit, CMS has authorized demonstration projects that are testing different ways of meeting the needs of seriously ill patients. The Medicare Care Choices Model allows patients to receive hospice-like support services while concurrently being treated for their illness.
Costs for palliative care teams and programs are offset by fewer trips to emergency departments and lower hospitalization and rehospitalization rates. In addition, patients and families rate the value of palliative care services highly. This explains why 80% of hospitals with 50 beds or more have established palliative care teams and some are starting to consider outpatient palliative care programs. In addition, health plans and payers, including Accountable Care Organizations (ACOs), Integrated Delivery networks (IDNs) and other types of provider-driven managed care organizations, are beginning to offer community-based palliative care programs to their patients/members to extend the benefits of palliative care into the home.
Palliative care programs and advance care planning that include earlier conversations about patient and family goals of care are consistently demonstrating their value in helping patients live their final days in accordance with their wishes. Data shows that in communities that provide greater access to palliative care programs, patients are less likely to die in the hospital.
Furthermore, findings show that patients experience fewer admissions to the intensive care unit in the last six months of life and are less likely to die in an ICU
Today, palliative care is becoming recognized as option at any stage of advanced illness, not simply reserved for care at the end-stage of life. Its use should be driven by patient need, not disease prognosis. Hospice care remains the gold standard for end-of-life care. Together, hospice and palliative care offer compassionate care when it is needed most.
That sounds judgmental, but it’s more akin to wishful thinking.
While death is a certainty, it’s rarely a goal, so we tend to resist, to worry, to grasp at new treatments or old beliefs.
But the emerging death doula movement offers another option: We can’t change the destination, but we can improve the journey.
The term doula is more linked to childbirth, describing someone present during labor to help a mother feel safe and comfortable. There’s no medical role; doulas are companions and listeners. They attend.
End-of-life doulas, also called death doulas or death midwives, similarly are attuned to a dying person’s emotional needs.
“It’s about filling a gap that the system doesn’t acknowledge,” said Christy Marek, an end-of-life doula from Lakeville. “The system is designed to tend the body. But when you get into the lonely feelings, the mess of real life, the expectations and beliefs around dying — those things don’t fit into the existing system.”
In some ways, death doulas signal a return to earlier times, when ailing parents lived with children, when life-extending options were fewer.
“Death was more of a ritual, really laboring with someone as they were dying,” said Jeri Glatter, vice president of the International End of Life Doula Association (INELDA) in New Jersey.
Family and friends “felt a sense of acceptance and completion and a knowledge that they had fully honored someone,” she said. “It’s the most loving act that they could do.”
Over time, though, “we became a very medicated society — and thank God for that. I don’t want to diminish that,” Glatter said. But medical options can create a sense of disconnect with our inevitable mortality. When those options are exhausted, “we say we’ll house them, make sure they have medication and have a bed that goes up and down.
“But people are saying, ‘I don’t feel OK about this.’ ”
Marek is the first end-of-life doula in Minnesota certified by INELDA, credited with creating the first death doula program for hospitals and hospices in 2003. It offered its first public training in 2015; last year, 700 people attended 18 sessions. Several other groups in Minnesota and elsewhere offer training and doula directories.
Glatter said the trend has roots with those who used birth doulas in the 1980s.
“These people now are burying their parents. Just as with birth, as we labor into the world fully engaged in that process, they’re saying, ‘I want to be fully engaged in this process.’ Doulas are the bookends of life.”
How can we do this together?
What does it mean to be fully engaged? Whatever the dying person wants it to mean.
“Is the person having their own experience, instead of trying to meet the expectations of the family?” Marek asked. “I’m there to create a space for the person who is dying to ask, ‘How can we do this together?’ ”
One woman, for example, asked Marek to tell everyone that she wanted acknowledgment — a greeting — each time someone entered her room, “even though it may look like she’s sleeping.”
Marek added, “I have no agenda other than reflecting to that person what they are saying, what they are feeling. I can give directions to family and friends, which is a comfort to the dying person because then people around them know what to do — and they feel listened to.”
As part of a new field, doulas occupy a niche among doctors, family, hospice and other factors. Sometimes, doulas fill practical needs, gathering paperwork or helping with funeral plans, particularly if relatives are distant, either geographically or emotionally.
More often, though, their roles are more personal: creating a vigil environment, writing letters to loved ones, helping family members recognize the signs of dying such as a change in breath and, finally, helping survivors deal with their loss.
Glatter said that doctors or hospital personnel sometimes worry that a doula will infringe upon medical decisions. But doulas have no medical role, and may even be able to provide information that doesn’t come up in medical conversations, “such as, ‘Do you know there’s a son with a restraining order?’ ”
Doulas’ lack of medical standing also enables consistency. Doctors may change. Hospice care may be suspended. “But a doula provides a continuity of care no matter what treatments are being done or not,” Marek said.
Dying as a creative process
Marek, 47, appears to wear not a speck of makeup. The physical transparency mirrors her comfort with the emotions that dying can expose. But it took her years to reach this point.
With a degree in child psychology, she intended to work with youngsters. Then she met a child life specialist, a field of which she’d never heard, describing someone who works with children with acute, often fatal, illnesses.
“It was like a lightning bolt went through me,” she said. “I knew that someday I would work with people who are dying. And it scared the pants off me!”
She went on to do other work, in the course of which she explored yoga, shamanism, writing, painting and more. She studied to become an anam cara, from pre-Christian Celtic spirituality that translates as “soul friend.”
Every few years, the idea of working with dying people surfaced, but never took hold. Then, five years ago, she learned about applying doula principles to the dying process. This time, the idea came cast as “the creative process at the end of your life,” and her path was clear.
“I feel like this has been following me my whole life,” Marek said. She took the training through INELDA, which includes vigil planning, working with the survivors, and self-care for doulas themselves. She founded a business, Tending Life at the Threshold.
“As doulas, we’re trying to normalize the experience of death,” Marek said.
She recalled one woman who said that her mother would love it if Marek would read the book of Psalms or a Hail Mary. “And I told her, ‘I can certainly do that. But it would be more meaningful if you did.’ ”
Once family members and friends learn that it’s OK to “lean into the pain,” she said, they may find a sense of comfort and ease with dying that, in turn, proves a gift to their loved one.
Another support system
Karen Axeen had been sick for what seemed like forever, after years of breast cancer and ovarian cancer and other chronic illnesses.
After spending almost all of 2016 in the hospital, she decided to enter hospice care. She also decided that she wanted a doula at her side.
“She kind of fell into the idea, talking with the hospital social workers,” said her daughter, Laura Fennell, who lives in Marshall, Minn. “I don’t live close by, so I think it was really helpful for her.”
Working with Marek, Axeen developed what’s often called a legacy project. In this case, she wrote several letters to each of her six grandchildren, to be read as they grow older.
“She wrote letters to be read on their 16th and 18th birthdays, on their wedding days, on the first day they have kids of their own,” Fennell said.
“I think I probably would have been lost after my mom had passed away, but Christy had everything organized,” she added. “It’s definitely a great service for those who don’t have family in the area.”
End-of-life doulas “are another support system,” Fennell said. “It was important for Mom to be able to get to know someone closely and have them walk her through the final process of life.”
Axeen died on Sept. 23, 2017, at age 57.
‘We know how to die’
Some death doulas volunteer with hospices or churches. Others work in hospitals, while others set up private practices.
Glatter mentioned a California prison where inmates with life sentences became end-of-life doulas “because they wanted to be able to care for their own,” she said. “They’re really an extraordinary group of men who wanted to pay their debt to society by helping other inmates as they die.”
An article in Money magazine included death doulas among “seven new jobs that reflect what’s important in 2017.” Also listed, compost collectors and vegan butchers.
The death doula trend reflects gradually more open attitudes toward death. Surveys show that 80 percent of Americans would prefer to die at home if possible, but few are able to. Yet the landscape slowly is changing. Hospital deaths slowly declined from 2000 to 2010. In that time, deaths in the home grew from 23 percent to 27 percent. Deaths in nursing homes held steady at about 20 percent.
The Centers for Disease Control suggested that the shifts reflect more use of hospice care. As the dying process becomes, for some, more grounded in the home, end-of-life doulas may become more familiar and, in Marek’s vision, help make death a natural part of life.
She reached that vision, in part, during an outdoor meditation project she began in 2014. For 1,000 days, she meditated for 20 minutes outdoors, no matter the weather. (It’s on Instagram as wonderofallthings.)
“Sometimes I’d be thinking, ‘This is awful. But that’s OK,’ ” she said. “It helped me develop a tolerance for whatever is happening, and to stay close to the fact that none of us is immune to the cycles of nature, including death.
“If you can sit when it’s uncomfortable — to be able to sit in the unknown — that’s huge.”
While family members may not be at peace with someone’s death, she added, they can be at ease with it as a natural outcome of life.
“One thing I believe firmly is that we know how to do this,” she said. “We know how to die, like every creature of nature does. We just need to get out of our own way.”
Many writers have tried to encourage conversations about dying, often with the aim of helping us achieve a ‘good death’.
By Jane Mccredie
At dusk some years ago, I walked past an open doorway in the southern Italian village of Paestum. Just inside, a body lay on a table, candles surrounding it, as locals filed in and out, paying their respects.
It struck me at the time how different this was from the general Australian experience, where the end of life is sanitised, hidden and often medicalised to the point of cruelty.
For centuries, our ancestors would have tended their dying relatives, washed their bodies, stood vigil over them in the homes where they lived and died. Many people around the world still do this, of course, but we in the West are more likely to end our days in aged care or, worse, a hospital intensive care unit. We may be subjected to futile, traumatic interventions right up to the moment we take our last breath.
In recent years a number of writers have sought to encourage franker conversations about dying, often with the stated aim of helping us to achieve a “good death”. Notable local books have come from intensive care physician Ken Hillman, general practitioner Leah Kaminsky and science writer Bianca Nogrady. But the reluctance to talk about death remains.
“It has become taboo to mention dying,” writes British palliative care physician Kathryn Mannix in With the End in Mind:
This has been a gradual transition, and since we have lost familiarity with the process, we are now also losing the vocabulary that describes it. Euphemisms like “passed” or “lost’’ have replaced “died” and “dead”. Illness has become a “battle”, and sick people, treatments and outcomes are described in metaphors of warfare. No matter that a life was well-lived, that an individual was contented with their achievements and satisfied by their lifetime’s tally of rich experiences: at the end of their life they will be described as having “lost their battle”, rather than simply having died.
We must reclaim the language of dying, Mannix argues. Clear, unambiguous conversations about what is ahead offer support to the dying person as well as those who will mourn their death. “Pretence and well-intentioned lies” separate the dying from those they love, wasting the limited time they have left. Mannix first discovered the power of straightforward language as a junior doctor when a superior offered to describe to an anxious patient “what dying will be like”. “If he describes what? I heard myself shriek in my head.”
The senior doctor went on to describe in detail the pattern of dying he had observed over years of practice: increasing tiredness, more time spent sleeping, a gradual drift into unconsciousness, followed by changed respiratory rhythms until the breath finally stopped. “No sudden rush of pain at the end. No feeling of fading away. No panic. Just very peaceful … ” he told the patient.
Back in the tearoom, he told the young Dr Mannix this was probably the most helpful gift they could give their patients. “Few have seen a death,” he explained. “Most imagine dying to be agonised and undignified. We can help them to know that we do not see that, and that they need not fear that their families will see something terrible.” Mannix was left amazed that it was possible to be this honest with patients, revising her “ill-conceived beliefs about what people can bear”, beliefs that could have prevented her from having the courage to tell the truth.
Over the decades since that paradigm-shifting experience, she helped countless people of all ages and backgrounds through the final stages of their lives. Their stories are threaded through this moving and informative book. “The process of dying is recognisable,” Mannix writes:
There are clear stages, a predictable sequence of events. In the generations of humanity before dying was hijacked into hospitals, the process was common knowledge and had been seen many times by anyone who lived into their thirties or forties. Most communities relied on local wise women to support patient and family during and after a death, much as they did (and still do) during and after a birth. The art of dying has become a forgotten wisdom, but every deathbed is an opportunity to restore that wisdom to those who will live, to benefit from it as they face other deaths in the future, including their own.
In Letting Go: How to Plan for a Good Death, Australian intensive care specialist Charlie Corke offers practical tools to help people make and communicate decisions about how they would want to be treated at the end of life.
Corke’s professional experience leads him to paint a very different picture of dying from that offered by Mannix. The specialties of intensive and palliative care are in some ways polar opposites: intensive care does everything possible to ward off the inevitable, while palliative care accepts death, seeking to ease the patient’s approach to it.
Corke admires the triumphs of modern medicine and the many achievements of his specialty, but he has also seen how easy it is for medical treatment to go too far. Most of us will die in old age, after a long period of declining health, he writes. One crisis or another will lead to us being taken to hospital by ambulance where, in the absence of clear instructions from us, medical intervention will escalate:
We will spend our last days connected to machines, cared for by strangers, and separated from our family. We will experience significant suffering, discomfort and indignity, receiving increasingly intense treatment that has a diminishing chance of success. Medical technology will dominate our last days and weeks. Our family will be excluded from the bedside, huddled in the waiting room, while “important” things are done to us. Time for connection and comforting, for any sort of intimacy or the opportunity to say goodbyes, will be missed …
The purpose of this book is to help people avoid that outcome. Corke offers clear advice on questions to ask doctors, on writing and sharing a plan, and on appointing a substitute decision-maker to step in if we are unable to express our own views.
Above all, he stresses the importance of clear, unambiguous communication about what we want to happen at the end of life. If there is any doubt about our wishes, maximum intervention will be the result:
Wishes matter, but it can be difficult to get them heard. Wanting to be saved is easy. “To do whatever is required to save” is what everyone wants to do for you, needs to do, and is expected to do. It’s what our medical system is designed to do. It’s the default; it’s what you get. When we want to set limits, it’s more difficult …
All in all, this is a useful how-to manual for everybody who will at some point face death (which is of course all of us).
In Every Note Played, Lisa Genova chooses a different form to explore the end of life.
Over the decade since publication of her first novel, Still Alice, which was filmed with Julianne Moore in the lead role, Genova has mined her background as a neuroscientist for fictional material, producing novels about dementia, autism, traumatic brain injury and Huntington’s disease. In her fifth novel, she turns her attention to amyotrophic lateral sclerosis, telling the story of Richard, an acclaimed concert pianist diagnosed with the disease at the height of his career.
ALS is the central, and strongest, character in this book, dwarfing the somewhat one-dimensional human actors and the overneat redemptions they achieve. The merciless progression of the neurodegenerative condition is described with elegant, sometimes gruesome, precision as Richard loses the ability to control first his arms, then legs and, ultimately, everything but his eyes
As in the real-life case studies presented by Corke and Mannix, the approach of death presents Richard and those close to him with appalling dilemmas: How much can we ask of others? How far should we go to preserve life? What does quality of life mean?
Richard’s state of mind as his disease progresses is not helped by the hearty refusal of his brothers to accept the inevitability of his fate. “What are you doing to fight it?” one asks when he sees Richard in a wheelchair. “You gotta stay positive. You should go to the gym, lift some weights and strengthen your leg muscles. If this disease starts stealing your muscle mass, you get ahead of it and build more. You beat it.”
Richard manages a slurred response — “Goo-i-de-a” — while privately wondering at his footballer brother’s incomprehension of his condition:
Is living at any cost winning? ALS isn’t a game of football. This disease doesn’t wear a numbered jersey, lose a star player to injury, or suffer a bad season. It is a faceless enemy, an opponent with no Achilles’ heel and an undefeated record … High tide is coming. The height and grandeur of the sand castle doesn’t matter. The sea is eventually going to rush in, sweeping every single grain of sand away.
Richard’s brothers, like all of us, might have benefited from a share in what Mannix refers to as her “peculiar familiarity with death”:
Strangely, this is not a burden or a sadness, but a lightning of perspective and a joyful spark of hope, a consciousness that everything passes, whether good or bad, and the only time we can really experience is this present, evanescent moment.
Local medical schools are in the process of a curricula revamp that will train students to focus more on end-of-life care, making Massachusetts the first in the nation to reach a statewide commitment to quality of life.
“Massachusetts is really leading the way on this. It led the way on universal health care, on gay marriage, and it’s leading the way on this, too,” said Dr. Atul Gawande, a surgeon at Brigham and Women’s Hospital and author of the book “Being Mortal.” “I’ve learned the question is not do you fight or do you give up. The question really is, what are we fighting for? What’s the quality of life we can fight for?”
The Massachusetts Coalition for Serious Illness Care has orchestrated the effort among four local institutions: Harvard Medical School, Boston University School of Medicine, Tufts University School of Medicine and University of Massachusetts Medical School.
Gawande, co-founder of the coalition, said Massachusetts has the opportunity to create a national model for medical schools across the country.
It’s an important shift, he said, from the fix-it mentality that many doctors are taught to possess. He said the extent of his end-of-life training amounted to an hour of discussion in the first two years of medical school.
“You go in focusing on wanting to be a hero and fix things,” Gawande said. “Teaching people in med school what it means to be an effective clinician for giving people cutting-edge care for quality of life — as opposed to quantity of life — is a neglected skill.”
The medical schools are taking inventory of what skills they’re already teaching and will add various training methods including role play patient actors. UMass Medical School’s simulation lab is already starting to be used for skills that extend beyond sewing and suturing, said Dr. Jennifer Reidy, the school’s chief of palliative care.
Medical students will be required to have conversations with people about breaking difficult news, prognosis and end-of-life planning.
“We’re using it to teach complex communication procedures,” Reidy said. “We want to ensure our newest clinicians are well-situated to practice these skills.”
The changes will be implemented in full by the beginning of next academic year, Reidy said.
Tiffany Chen, a third-year medical student at UMass, said the topic of death is still taboo even in the medical field.
“It’s really hard to talk about death, and it’s hard to conceptualize,” Chen said. “But death is not a failure and there’s always something you can do for a patient. If we can infiltrate the medical field with that mindset, we could do a lot of good.”
The final months of a person’s life are a confusing time for both the person and his or her family. Not only do final preparations have to be made, but the emotional stress of impending loss leaves many overwhelmed as grief makes tough decisions increasingly onerous.
Often, families seek professional help in the form of assisted living centers to alleviate the burden as their loved ones age. But once a patient receives a diagnosis that he most likely has less than six months to live, a new option becomes available: Hospice care.
Lee Read, a case manager with Hospice of the Piedmont, manages more than two dozen hospice patients at the Greenbrier and Hollymead locations of RoseWood Village Assisted Living centers, most of whom have dementia. Her organization, a community-based non-profit headquartered next to Sentara Martha Jefferson Hospital, focuses on end-of-life care for patients living all across Central Virginia. Read’s ultimate responsibility, and the company’s vision statement, is to make sure “nobody dies alone or in pain.”
In doing that, she manages the medications, equipment orders, triage care, dietary requirements and everything else her patients need to remain comfortable. She also serves as a liaison for the insurance companies, doctors and family members involved with her ever-changing caseload. While most healthcare professionals develop relationships with their clientele, hospice workers watch almost all of their patients die, making the emotional impact an additional challenge.
“I think over time you develop a thick skin,” Read said. “Otherwise, you could take on so much [emotion] that you become almost debilitated or think that you really can solve all those [health] problems, and [you] can’t.”
Read has a minimum number of required visits for each patient that is based on Medicare requirements, usually ranging from two to four times a week, during which she tracks each patient’s condition and determines what he or she needs. After six months, a patient can recertify if her condition is still declining and their diagnosis is the same, or she can “graduate” if her condition improves. She also works with a team that includes a social worker, a chaplain, certified nursing assistants and supervisors who specialize in different parts of the care process.Once a week, the team meets at the company headquarters to discuss the status of each patient and figure out what needs to be accomplished in the week ahead. Each meeting also includes a moment of silence, after which a ceremonial marble is dropped in a vase for each patient who has died since the last meeting. While it is marbles this time, each year a new symbolic object is chosen.
For Read, hospice was not her first career path. After graduating from William and Mary with a pre-med degree, she pursued a master’s in divinity from Columbia Theological Seminary in Georgia. She then went on to become a chaplain at the University of Virginia and Westminster-Canterbury of the Blue Ridge retirement home in Charlottesville.
But two events changed her perspective and led her back to health care. Her father received hospice care at the end of his life, and her 4-year-old son was diagnosed with cancer within a short span of time. Her son survived the disease, but the experience inspired her to go to nursing school. She also completed the majority of the requirements for a degree in social work, giving her formal education in nearly every function her team at Hospice of the Piedmont performs.
Her interest in helping people resulted in a career defined by “moving to different spots around the bed” of her patients, training her to fulfill both their spiritual and healthcare needs.
For Jeannie Holden, whose mother, Dora, is one of Read’s patients, hospice care came in a time of need.
“I can look back at the emotional part of that [decision] and how difficult it was. My mother was in the hospital, and she had sepsis, and we really didn’t think she was going to pull through,” Holden said. “Up until that point, I didn’t know that I really had any options.”
But after discovering Hospice of the Piedmont, that process became much easier.
“From the get-go, the care, the resources, the on call, the always being there from the social worker to their chaplain, [they] let me know they were there for me as well as my mother,” Holden said. “I always think that there’s more that I can do and I always have to be available, and they’ve helped me to realize that I am doing enough.”
For those who might be in a similar position, Holden said, it’s important to know the reality of hospice.
“It’s not synonymous with death being imminent, [but] that it is certainly an end-of-life process,” Holden said. “Hospice can help you maneuver through and help you on the path to accepting that a loved one is at their end of life, [and] they help to make that quality of end of life good, to the best that they can.”
Even after dealing with death personally, professionally, theologically and medically, though, Read is still puzzled by life’s biggest questions.
“I certainly don’t have all the answers, and I’m not even that comfortable when I’m around people that have all the answers, whether it’s a religion or even a company. I like the questions and I like looking for the answers together,” she said. “It’s not my death; it’s not my journey. I am privileged to walk on the ground of the sacred journey of whoever is dying, but it’s their death.”
The families she works with often ask many of those same questions, to which she usually says, “I don’t know, but we’ll be here.”
Despite confusion over what exactly constitutes “comfort care,” former first lady Barbara Bush’s decision to opt for it is opening doors onto some very important conversations, according to local end-of-life care experts.
Before she died Tuesday, the 92-year-old Bush had been struggling with congestive heart failure and chronic obstructive pulmonary disease, reports said.
When news broke last Sunday that she was opting for “comfort care” during her final hours, a flurry of questions followed.
Is comfort care not medical care? Is it a form of hospice? A form of palliative care?
Janet Burda, advanced practice nurse with Palos Community Hospital’s Home Health program in Palos Heights, said comfort care is a general term for keeping a patient comfortable at the end of life.
“Doing that means providing medical care to help with symptom management,” said Burda, who works with both hospice and palliative care.
Relieving anxiety, pain and shortness of breath are examples of comfort care, she said.
The other part of comfort care, she said, “is helping relieve anxiety for the caregiver.”
Often caregivers don’t know what to expect at the end of a loved one’s life, Burda said, and they often don’t know how to recognize symptoms of discomfort in a patient who is not able to talk or otherwise communicate. “We can help them with that.”
Palliative or hospice?
Palliative and hospice care both address the physical, emotional, medical, spiritual and psychosocial needs at a vulnerable time in a patient’s life, she said. They differ, Burda said, in terms of when and where they are applied.
Palliative care can begin at diagnosis, while hospice care is relegated to the last six months of life, Burda said.
Rachael Telleen, director of community outreach programs for JourneyCare, a hospice and palliative care organization that hosts presentations across the region including the south suburbs, said, “Palliative and hospice are both considered comfort care.”
Comfort care, she said, “is a term people are using now because it’s easier for doctors to initiate it.”
The word hospice can really scare people, she said. “So, instead, if we can approach the situation using the word ‘comfort,’ people are more accepting and more open to it.”
Telleen said while both palliative and hospice aim to manage pain and symptoms, palliative care is a support that may be provided while a person is still receiving aggressive treatments.
Hospice, on the other hand, is for patients who are no longer receiving aggressive treatments, she said.
“A patient in hospice receives a lot more services,” Telleen said.
Burda said palliative care allows the patient the option of going back and forth to the hospital. It consists of a team in the inpatient world and a team in the community setting, she said. They work alongside an attending physician.
“A person who has cancer and is receiving chemo or radiation can be under palliative care for symptoms such as pain, anxiety, shortness of breath, nausea, vomiting or diarrhea,” she said.
“A palliative care team can help manage those symptoms but the patient wouldn’t qualify for hospice because they are not necessarily terminal,” she said. “We’re kind of that stepping stone before hospice.”
While palliative care can go on for an extended period of time, hospice is for patients who are expected to live six months or less, Burda said.
To qualify for hospice, a patient must have a qualifying terminal illness and meet certain criteria, Burda said.
“Old age is not a qualification necessarily,” she said.
All of these options are typically covered by insurance and Medicare, Burda said. Hospice is a Medicare benefit and the components — medications, equipment, physician fees — are typically lumped together.
To some people, Burda said, palliative care sounds better, even if it would be more beneficial for them to be in hospice because of its around-the-clock access to a nurse and symptom care.
“But sometimes that scares people. They don’t want to lose that option to go back to the hospital,” she said. “They are not ready to accept that it is the end.”
Sometimes, she said, she walks people through different scenarios to help them picture what the journey will look like.
“At the beginning the patient could be doing fine. That’s the best time to get hospice involved because they get to know the patient and the caregiver and help them on this journey,” she said.
All end-of-life care should begin with conversation, Burda said.
People should take steps to educate themselves and family members about preferences and options, she said. More information on the Palos program can be found here.
“Talk to your family. Have that critical conversation about what you want the end of your life to look like. That affords you the control,” she said.
“There are people who say they don’t know and don’t care. That’s fine too but then designate someone to make those decisions for you when the time comes that choices need to be made,” she said.
Telleen said Bush’s death came on the heels of National Healthcare Decisions Day, which was April 16.
She said the former First Lady’s passing has sparked conversation about end-of-life planning.
“We want people to know what they want before they’re in a crisis,” she said. “Making decisions in a crisis is the most challenging time for people to think clearly.”
Telleen said she encourages everyone older than age 18 to think about advanced care planning and to develop an advanced directive.
“That is being prepared in case something happens and you can’t speak for yourself. And that can happen when you’re 20 or 30. It doesn’t just happen to people who have an illness that is progressing. It could happen because of a car accident. It could happen at any point in an unexpected manner,” she said.
“Ask yourself, ‘If I couldn’t speak for myself who do I identify to speak on my behalf and does that person understand what your wishes would be?’” Telleen said.
Telleen said JourneyCare (https://journeycare.org/) provides a free document called Five Wishes available to residents in 10 counties in northeast Illinois to help them make advanced care decisions. For more information, go to journeycare.org/advance-care-planning.