Conscious, holistic approaches to end of life Volume 2 ...Conscious, holistic approaches to end of...

| NATURAL TRANSITIONS MAGAZINE | 1

Conscious, holistic approaches to end of lifeVolume 2, Issue 1

Swaddled in Silk

Death That's Uzima [Wholeness]

Prescriptive Palliative Music

Love in the 11th Hour

Hospice: Easing the Way

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Humanizing DeathBy Karen van Vuuren

EdITORIAL

We knew my nine-year-old brother Dirk was dying, but nobody spoke of it. He languished alone in an intensive care unit for months, hooked up to machinery that tethered him to life. These were the days when ICUs were off-limits to children, so I was “spared” the sight of his fading away. My father visited my brother as often as he could, whereas my mother couldn’t bring herself to witness such suffering.

Modern technology has created a gray area between life and death, and my brother—in 1973, in London—hovered between worlds, not because the doctors hoped for his recovery, but because sustaining him in this limbo was the medical imperative of the day. (Dirk had a severely compromised liver and other serious physical and mental debilities, so no one had expected him to live very long.) Sadly, although Dirk had benefited from the community of family for most of his life, at its end, he journeyed into death alone. A phone call from “someone at the hospital” informed us that he had “passed.” Hospice hadn’t entered the picture.

It’s ironic to me that my brother should have died in an “intensive care” unit, because “care”—physical, emotional, spiritual—as provided by any good hospice, is what was most lacking during his dying phase. More than forty years after his death, my brother’s legacy is to have made me a champion of hospice. I want others to know about it, so they can have what we didn’t. I say that even though I realize that hospitals are now more sensitive to the needs of families, and things are changing. Yet clearly, those who work daily with the dying and their families have the most experience and expertise to positively affect their lives.

“It’s about how you live” is a popular hospice slogan, and hospice can make a huge difference in the life of a family with a terminally ill patient. If only Dirk had received palliative treatment for the agonizing pain that kept him up at night; if only my parents had received support and counseling to prepare them for the loss of their son… there are many “if only”s. But having seen the opposite of a “good death” has infused me with an evangelical passion for hospice. We here at Natural Transitions believe that hospice workers help humanize the experience of death. The role of our non-profit organization is to complement their necessary and important work for society. This issue is a tribute to the humanity of those who serve the dying and their families.

4 | SPRING 2012 |

OUR vISION• Acceptance of death, loss and grief as a natural part of life

OUR MISSION• To share holistic approaches to end of life • To provide a forum for end-of-life caregivers and educators

ExEcUTIvE EdITORKaren van Vuuren

cOPy EdITORS / PROOfREAdERS Ann Erwin & Margaret Pevec

dESIGNSean Doyle www.doylegraphics.com

ILLUSTRATORChristina Lewis

AdvERTISING dIREcTOR Marcie [email protected]

Published quarterly by Natural Transitions a 501(c)3 non-profit organization

3980 North Broadway Suite #103–171 Boulder, CO 80304 [303] 443-3418 [email protected] http://www.naturaltransitions.org©2011 Natural Transitions Magazine Opinions expressed in Natural Transitions Magazine are not necessarily those of Natural Transitions or its Board members.

Cover photo: Selian Hospice patient in Tanzania;Above: HIV positive family in Tanzania. Courtesy of The Denver Hospice

Corrections for previous issues:V1#4 Advanced Directives, “Lessons Learned” photo by Jennifer Downs. V1#3 Living with Grieving, cover photo by Patrick George Photography, www.patrickgeorgephoto.com


features

8 Hope for Hospice

10 Being Pissed Off… At the End of Life

15 Minding the Bedside: A Reminder from a Hospice Nurse

18 Dancing with the Dying: Life as a Nurses' Aide

20 Prescriptive Palliative Music

24 Questions for a Hospice Counselor

29 Love in the 11th Hour

30 To Cure Sometimes, Relieve Often, Comfort Always: Reflections on Palliative Care

INSIdE THIS ISSUE

Natural Transitions Magazine | Volume 2, Issue 1

departments

editorial

3 Humanizing Death

media

28 The Best Care Possible: A Physician’s Quest to Transform Care through the End of Life by Ira Byock, MD

a time to die

6 Swaddled in Silk

cultural connections

12 Death That's Uzima (Wholeness)

last words

35 Waiting for Grace

6 | SPRING 2012 |

Joseph died at 3:05pm on January 19, 2011. He lay cradled in my arms; my 20-year-old daughter, Grace, was sitting close by, gently holding his legs. During the hours of his dying, there was a radiant full moon and a serious, sparkling snowstorm; the lights on the Christmas tree outside his window shone through the accumulating snow on its branches. Debbie, the hospice nurse, came and went silently, delivering soothing morphine to Joseph’s lips to ease his pain. I remember one last glance exchanged between our eyes—a nod of her head as she let me know it would be soon.

My face was next to his. I remember the sweetness of his breath on my cheek and my surprise at how wrong my imagining was of how a 66-year-old dying man’s breath would smell. It was sweetness, so precious—and then it was gone. His lips literally kissed his last breath goodbye as his face eased into the gentlest expression, graced with a small suggestive smile. He was exquisite in death. I know this is not always the case, as I’ve held death closely before, but it was sheer beauty for Joseph.

After a few moments, I stood up, addressing the space just above my head, “Joseph, you did it, you’re free!” Maybe a little too loudly, a little too forced, but I couldn’t really tell where he was now, and I wanted to be certain he heard me. Somehow, I know he did. I could almost hear Joseph’s familiar chuckle and his “high five.” He was always striving for levity and love in each moment; this would not have been an exception.

Grace and I sat in the room with Joseph’s body lying before us so incredibly still. In the midst of those indefinable moments, we kept finding ourselves carefully touching his face, his arms, his hands as the warmth lingered, but faded quickly. It was as if we had to keep checking to see that this had happened, that this was real. It was an honoring of where he was no longer residing.

A TIME TO dIESwaddled in SilkBy Merrin Stein

A year before, the transition guides had helped me to realize that Joseph could be at home to die, in peace and quiet. He could lay in vigil undisturbed, and I did not need to release him into the hands of “professionals,” who would steal him away into the night and out of my sight before my heart could adapt. I was able to comply with the legalities and was led through the appropriate procedures, but I didn’t need an official funeral parlor or a stranger’s permission for anything I did in honor of this sacred transition.

When we were ready, these women transition guides gently and respectfully began clearing and making sacred the space. The medications and trays were taken away, and in their place soft silks covered the tables and candles illuminated the room. They brought in bowls of warm, fragrant water, and I was guided to bathe Joseph’s body. This cleansing was sweetness and felt entirely natural, laced with no fear or awkwardness.

I had purchased several yards of white silk, and we had practiced the swaddling, wrapping the silk around a friend as he

lay still and we rocked him back and forth. Because of this trial run, now I moved comfortably into wrapping Joseph in his final garment. He looked regal, like a knight, so satisfied after fighting the greatest battle and winning. There was such a profound presence in the room, the feeling was pristine, and peace defined each moment as it sighed into the next.

Friends came that night to sit quietly with us, and in the morning, Joseph’s body was lovingly carried down the stairs to the cherry casket that Keith, my partner,

with his woodworking expertise, had crafted for the sole purpose of transporting Joseph. Sitting with Joseph one evening, I had described to him all the details that would unfold after his departure: the vigil at the house, the vigil at the Star House, the program, and the outdoor cremation in Crestone. “Joseph, Keith has built a beautiful wooden cof-, cof-…,” and as I stumbled on the word, Joseph lightly and generously offered, “Merrin, he has made me a wooden canoe?” “Yes, Joseph, a canoe.”

The Star House, a community spiritual center nestled in the nearby foothills, had generously allowed us the use of their sacred space for the continuation of our vigil. In a light-filled circular room, three concentric circles of chairs surrounded a table draped in refulgent golden silk, and we laid Joseph, swaddled in white, gently upon it. Only his

face and forehead were exposed. He looked like a saint, a king, or simply our beloved Joseph lying in state before us.

The afternoon service was sweetness, song and sharing, and as the evening grew darker, and the natural light that had filled the room gently faded, the only light was from the candles in the windows, from the candelabras surrounding Joseph, from the fireplace, and that reflecting in our eyes and from our hearts. It was pure beauty, infused by the energy of a strong and inexplicable angelic presence. Truly, how could they resist so much love?


Six of us kept Joseph company throughout the night. Now and then a friend would come sit and be in the presence of this great man’s body, perhaps to keep his soul company as it was observing us all in wonder. This is the tradition of a vigil, that after death, the soul of a being is still near, perhaps getting used to being without form…and we are near as well, those who loved him in this life, to offer our awe-laced respect and intentions of support… or just to stay close to our friend in acknowledgement of what must be an incredible adjustment.

After the vigil, we transported Joseph in his canoe down the many highway rivers to a sacred space in the wild land outside of Crestone, Colorado. There, experienced guides, with their strong and certain vision of what is possible, supported us through an outdoor cremation ceremony. Joseph was—one more time—the centerpiece of light in a circle of loving friends. On a freezing morning, I lit his funeral pyre and we were warmed by Joseph yet again, as we stood witnessing even his body vanishing into the winds and wonders of the next.

Merrin Stein is a writer and high school administrator at Shining Mountain Waldorf School in Boulder, Colorado. The home she now shares with her partner, Keith, has been a setting for marriage, birth, divorce, illness, and, more recently, death.

8 | SPRING 2012 |

“I don’t think I’m ready for hospice.” These words can come from patients in the midst of crisis. They may still be pinning their hopes on that next round of chemotherapy, despite the slim prospect of reversing an inexorable decline in their health. Even patients who have ditched ineffective medical treatment for greater quality of life may mistakenly believe that hospice is appropriate only for those last weeks, days, and hours.

Many people hold hospice services in the highest regard, especially when they have experienced the gifts that these services make possible. It’s the uninitiated who often don’t realize that early access to hospice care can improve lives—and frequently extend life—through the provision of physical, spiritual, and emotional support. Lamentably, the length of stay for hospice patients is declining. Doctors are referring patients and hospices are admitting them when they are actively dying rather than earlier in their disease process when they would benefit from care over a longer time frame. Currently, hospices face changes in Medicare reimbursement that raise uncertainties about their future financial health and their ability to deliver desirable quality of care. What lies in store for a philosophy of care that is compassionate, patient-led, and holistic?

In the late 1970s, modern hospice care crossed the Atlantic from the UK. The US hospice movement was spearheaded by volunteer believers with day jobs in the caring professions who offered their expertise gratis to their communities when they could. Marcia Lattanzi-Licht was a nurse who volunteered with Boulder County Hospice of Colorado (now HospiceCare of Boulder and Broomfield Counties), one of the country’s first hospices. Lattanzi-Licht’s hospice was one of several Medicare

demonstration project hospices. These early hospices paved the way for the Medicare Hospice Benefit that was permanently established by Congress in 1986. (The first US-based hospice began serving patients in Connecticut in 1974. The Hospice of Marin in California and the Royal Victoria Hospital in Montreal, Canada, followed shortly thereafter.) The biggest challenge in the early years was to “gain credibility from the medical profession at large and nursing communities, so that hospice services were seen as legitimate,” says Lattanzi-Licht. In her view, Americans have made great headway in accepting hospice as a valuable, life-enhancing service. Physicians understand more about the role and value of hospice, not least because hospices now employ physicians who are certified in hospice and palliative care. These hospice doctors are ambassadors for the hospice movement, building bridges by communicating with their peers in the broader medical community, says Lattanzi-Licht.

Yet, in a culture where mortality means defeat, there are widely held expectations that physicians will fend off death at all costs. Ira Byock, author, palliative care physician and outspoken champion of hospice and palliative care, has made it his life’s work to point out roadblocks to hospice and palliative care within our medical system. For one, he sees a need to revise how we train our physicians. “It’s harder to change curriculum in medical schools than it is to get peace in the Middle East,” he told a rapt Denver audience during a tour for his new book, The Best Care Possible (see review on page 22). Byock stated that trainee doctors are required to work 200 hours in obstetrics and gynecology, although “only 50 percent of Americans are at risk for an obstetrical experience, yet 100 percent of us will die; so why not give 100

H pe for HospiceBy Karen van Vuuren


of the program. Others believe that bringing in experts in pain and symptom management—those who understand the nature of effective end-of-life care—may lead patients who opt for continued curative treatment to make different “informed” choices about care (choosing quality of life over uncertain and debilitating treatments).

How to maintain the currently established high standards of care is one of the biggest challenges facing hospice administrators, according to Lattanzi-Licht. The National Hospice and Palliative Care Organization has developed these standards, and Lattanzi-Licht says hospice providers, particularly rural hospices, must work to maintain them in the face of the increasing economic limitations on healthcare. Byock has called for a “high common ground agenda” driven by the same consumer-based movement that installed modern hospice in the United States. Byock and others who sing his tune contend that the fight is not just to preserve hospice for future generations; it’s also about migrating the hospice concept of gentle, compassionate care into other areas of our healthcare system.

The pioneers of hospice in the US differentiated themselves from their British forebears by setting up a model of hospice in community. While the English model delivered care to patients in facilities, the goal here was to serve patients in their own homes. Statistics show that most of us would prefer to die in our own beds, surrounded by people

we love. Hospice is now serving more people who die in institutions, says Lattanzi-Licht. “Hospice works when there is a family member or loved-one providing care. If you have an elderly couple and the spouse can no longer provide care, then that’s when care might go to an inpatient setting. There’s a whole group of people cared for in long-term care facilities by hospice.” Most US hospices do not have their own in-patient care units, which are hard to sustain financially. Many hospices have contracts with hospitals and other providers who offer beds for hospice patients.

Hospice occupies a cherished place in the hearts of many families whose pain has been eased and whose grief has transformed because of a hospice worker’s tender loving care. But does hospice need to rebrand itself? Byock believes hospice should promote itself as “pro-life”—a term he has reclaimed—to mean providing care that is gentle and honoring of life, to promote quality of life until it is no longer. Can hospice shed its image of “last port of call” and stand out as an effective means to gentler life transitions? Do Medicare regulations need reform to allow for concurrent treatment for terminal

illness alongside the ministry of the hospice interdisciplinary team? With supporters on both sides of the political fence and a Boomer generation demanding choice, hospice will endure. But can we extend its reach? Can the philosophy of patient-

centered, humane care penetrate the rest of our modern, high-tech medical world? That’s the big hope for hospice in the United States.

Karen van Vuuren is executive editor of Natural Transitions Magazine, and a documentary filmmaker who focuses on end-of-life issues.

hours to end-of-life teaching, including hospice and palliative care rotations?” He also demanded that pain management should be part of physician licensure, adding that New York and Vermont are beginning to legislate medical school curriculum and making improvements in training for end-of-life care.

Both Lattanzi-Licht and Byock are encouraged by consistent bipartisan support for hospice and palliative care among lawmakers. For many years, legislators have been receiving feedback from their constituents about the benefits of hospice, says Lattanzi-Licht, adding that this was also how the Medicare benefit came into being during the fiscal conservativism of the Reagan era. Hospice saves healthcare dollars, and it’s the “best care possible” at end of life.

In his Denver talk, Byock acknowledged the limitations of the Medicare benefit. Currently, Medicare patients who choose hospice services are required to discontinue curative treatment for terminal illnesses. Byock believes this requirement deters patients from accessing hospice until they are at the very end of their lives (if they do so at all). Byock believes patients should be able to continue with treatment and still access hospice and palliative care services. Making it an “either/or choice” taints hospice, says Byock. It becomes a last resort, the death knell that bodes the end, obscuring the notion that hospice improves life rather than simply easing death.

Not everyone in the hospice-palliative care world agrees with the idea of concurrent hospice and curative treatments. Some leaders in the field feel that continuing curative programs may negate the cost-saving aspects

It's harder to change curriculum in medical schools than it is to get peace in the Middle East.

10 | SPRING 2012 |

I am witness to many friends who are struggling with illness, so I carry around a lot of stories. “Jane” became critically ill, only to be told that she was no longer covered by insurance; during her struggle to find coverage, she died. Doctors reassured “Chuck” that a simple procedure would help him; something went awry and he died on the table. “Vicky” stopped taking her medication, and she died.

What do these stories have in common? They incite a normal human reaction: anger. What can we do with raw anger when illness is present, especially near the end of life? This article will explore anger and ways to deal with it in dying patients and those who are grieving.

As a person who has lived with life-limiting illness for years, I will be the first to admit that I carry a lot of anger inside of me. The cumulative effect of an unpredictable body, multiple losses of peers to my illness, and the general unfairness of it all picks at me, little by little. Some of my anger is directed to health care providers, who ask stupid questions or violate my space, despite good intentions. Some of my anger is directed at the “system”—anything from health insurance and hospital policies that squelch patient autonomy to how large, “corporatized” disease charities treat their patients. On a positive note, sometimes my anger can come out as a feistiness, which might actually play a role in keeping me going.

Being Pissed Off...At the End of LifeBy Isabel Yuriko Stenzel Byrnes

Anger is the first A in Elizabeth Kubler-Ross’ DABDA, the acronym for the stages of grief (denial, anger, bargaining, depression, acceptance). Anger is a normal response to processing what’s going on for those who are dying and for the bereaved. Anger may be directed at God, fate, the “system,” or to those closest caregivers. When my sister was terminally ill, and the doctors told her there was nothing else they could do for her, she got angry, stating, “They are giving up on me!” It is so easy for the dying patient to project her own frustrations onto others. Underneath the bitter and ornery anger might be more vulnerable emotions. Isn’t anger just fear, frustration or despair, externalized?

Carrying around unresolved anger is a burden. The energy it takes to be angry, including the stress hormones involved, can be physically exhausting. Anger changes relationships, and impairs the remaining quality of life in terminal patients.

What can health care providers offer angry patients? The answers to this question could fill a book. Each caregiver will find his or her own way to deal with anger, but here are some basic suggestions. Caregivers can give permission to the patient to be angry (while providing some boundaries for how that anger is directed). Caregivers

can explore what’s under the anger. Is it fear? of what? Resentment? of whom? Frustration? at what? Can there be more choice and control for the patient? Helplessness is frequently behind anger, and sometimes just acknowledging what can be controlled can be helpful.

While the process of dying—with its uncontrollability, pain, and loss of function—invites a host of emotions, I imagine that patients who choose to die at home under hospice care might experience less anger than hospitalized patients. Hospice patients might be more accepting of their circumstances, have more control over their situation, and be surrounded by familiar support.

The beauty of the hospice movement is to offer choices to families to minimize stress, and to offer support to families to manage difficult emotions, like anger, when dealing with

a loved one’s dying and death.

After a loved one’s death, anger is a natural grief response. Life can turn upside down in a loved one’s absence—and the rest of the world just goes on. Trying to cope with loss while everyone else maintains normalcy would piss me off. What can health care providers offer angry survivors? The response is similar to what one offers patients: giving permission to family members to be angry—even if the anger is directed at the deceased. For example, my best friend, who lived in another state and was struggling with advanced cystic fibrosis, planned a trip with me, but died a few

Isn’t anger just fear, frustration or despair, externalized?


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weeks beforehand. She had never revealed how sick she actually was, and I was angry at her for hiding the truth from me.

The other week I was visiting a family who had lost their adult daughter. The husband shared his frustration towards the hospital for their perceived incompetent care. This response is common: for survivors to have regrets and suspicion that the medical community did something (or didn’t do what they should have) to “cause” the death. Whether he heals from this anger depends on several things—his temperament and support system, how he expresses himself, and, most importantly, time.

The father of this woman said, “What’s the point of being angry? What’s done is done. Anger won’t bring my daughter back.” He was trying to use logic to suppress anger. That’s hard to do! Each family member grieves differently. Anger is personal.

The expression of anger can also be culturally specific. I am American, so I expect to have control, to have things organized so they run efficiently. If that doesn’t happen—especially at the end of life and in loss—I get angry. In my mother’s Japanese culture, though anger exists, it is more common for people to show stoicism and be resigned to that which angers them, by expressing shikata ga nai, “It can’t be helped.” Not battling against the source of anger, but acceding to it, is a form of surrender. Surrendering to anger is one way to make peace, to find acceptance. But surrender isn’t easy.

Guilt is a common reaction to loss, and I see guilt as anger at oneself. Reliving the “should have”s and the “if only”s is part of the normal process of grieving, but too much rumination can lead to stagnation and depression. One helpful activity for families is a postmortem care-conference, where family members meet with medical providers to revisit the medical aspects of what led to the death and what medical decisions were made before the death. Listening to the family, helping them to understand what happened, paying attention to their emotional experience, and trying to ease any sense of uncertainty can be helpful in reducing blame or distrust.

Anger needs to be let out or one risks lugging around bitterness for years. Holding onto anger risks getting “stuck” and hindering emotional maturity. Like a geyser increasing in heat and energy, it can be incredibly therapeutic to “explode” and experience a massive emotional catharsis. This can be done by crying, yelling, hitting a pillow, sprinting or testing oneself physically, creating a violent work of art, writing a letter, or resorting to public displays of anger such as picketing and protesting. Also, when I get sick or lose a friend, the inner “sailor” in me comes out. Profanity, for me, has been a harmless way to express my anger. Ironically, sometimes at my angriest moments, I will find myself laughing

aloud, ridiculing myself and the source of my anger. Laughter is probably just a defense mechanism protecting me from the pain and intensity of my emotions. But it sure feels better than fuming.

By mobilizing a response, anger can be adaptive. Remember MADD? What an appropriate acronym, for “mothers” who organized out of despair and anger “against drunk drivers”! Anger can be a great motivation to do something or create something in memory of a loved one. The energy of anger, if redirected in positive ways, can become compassion. Starting an organization for a cause that spares others from suffering can

be incredibly therapeutic.

It would be unusual not to experience anger with illness, the end of life and in grief. I’ve never believed anger surrounding loss was a “stage” or a specific period. Anger

boils up at unpredictable times, on and off, sometimes for years. A trained grief counselor can help survivors explore this complex emotion and see that anger is neither bad nor good, but just part of being human. It’s one way we adapt to loss and try to make sense of it. But it sure feels good to let it out. In the best scenarios, anger can be steered to mobilize us to change—for the better.

Isabel Yuriko Stenzel Byrnes is a patient advocate, social worker, and author. She lives in Redwood City, California, with her husband, Andrew.

Surrendering to anger is one way to make peace.

12 | SPRING 2012 |

I’ve been a hospice chaplain at The Denver Hospice for nearly 20 years—and a world traveler for longer than that. I’ve visited hospice programs in India, Australia, and Tanzania. While hospice / palliative care is now available in most parts of the United States and in many other developed countries, until 1999 on the African continent, only South Africa had hospice. Now there are hospice programs in at least 16 African countries, although it is still very new. In many African countries, morphine is illegal or so strictly controlled that it is not available to those who are suffering physical pain at the end of life. Not having morphine available (the drug of choice for pain and symptom relief in hospice) is a major impediment to the spread of hospice in Africa.

The Foundation for Hospices in Sub Saharan Africa, a program of the National Hospice and Palliative Care Organization, has helped connect and support 93 US–African hospice partnerships to spread hospice care in Africa. Partnering with an African hospice is a two-way exchange of ideas, staff, and approaches to hospice, as well as a commitment by the US hospice to give moral, educational, and financial support. Since 2001, The Denver Hospice has had a partnership with Selian Lutheran Hospice in Arusha, Tanzania.

Dying as a natural part of lifeSelian Hospice currently serves over 3,300 patients with only 10 paid staff and around 300 volunteers. Seventy to ninety percent of Selian patients are HIV positive, and many of those also have tuberculosis. Selian provides medications, basic food supplies, and social and spiritual support. Staff also provides support to over 1,000 orphans and vulnerable children.

cULTURAL cONNEcTIONSDeath That’s Uzima [Wholeness]Hospice in TanzaniaBy Lisa Motz-Storey

In 1999, Dr. Kristopher Hartwig, a palliative care physician in the United States, approached his friend, Dr. Mark Jacobson, then director of Selian Hospital, with the idea of starting a hospice program. Mark was hesitant at first. The Maasai (and other tribes in the area) had a rich and ancient heritage, which included taking care of one another through the dying process. Death was seen as a natural part of life, a part of wholeness or uzima. Their discussion continued and there was agreement that the old traditions were not keeping up with demands for the care of the sick and orphans. The AIDS pandemic, like an unending tsunami, has wiped out the people’s ability to care for one another in the traditional ways. Over 6,000 Africans are still dying of AIDS every day. Read that last sentence again!

As if the sheer numbers affected were not enough, the stigma surrounding AIDS was such that, just when patients needed more care and support, many were shunned by their families and communities. The health-care system in Tanzania (and in much of Africa) was severely underfunded, which meant that, in 1999, medications to alleviate symptoms—including pain from terminal illness—were nearly non-existent. Hospice care was desperately needed.

Sometimes singing hymns was the only medicine.Using the traditional network of church and community leaders and community health workers, a small team of volunteers from Selian Hospital began to visit the sick in their homes. They offered spiritual and social support, as well as education on how to prevent the

spread of infection. Medications were not widely available; sometimes singing hymns together was the only “medicine” people had to relieve pain and anxiety. Over the years, a patchwork of funding from churches, non-governmental organizations, aid organizations, and The Denver Hospice allowed medications and food aid to reach patients.

African hospices, including Selian Hospice, are strikingly culturally appropriate. Hospice workers are usually local and members of the same tribes as their hospice patients. The staff understands the customs and practices around death and dying because they share the same tribal culture.

When people—even The Denver Hospice employees who are planning to

visit Selian—hear about the partnership, they often assume it’s a one-way relationship—we raise money and share our vast experience and wisdom with them. They quickly learn that

the staff at Selian has a lot of wisdom and experience to share with us as well, for example, their effective use of the 300 volunteers who help their small staff work with over 3,300 patients. Volunteers are the backbone of their program.

AIDS survivors become hospice volunteers.The volunteers at Selian receive an initial three-week training course, with frequent in-service training and monthly meetings during which volunteers report on their patients. Most volunteers are subsistence farmers with no paid job and only enough land to grow food for their families. Even though it’s a big time commitment, volunteers feel pride in being recognized as leaders and helpers in their communities. Each volunteer visits at least 10 patients in his/her village or neighborhood twice a week

Seventy to ninety percent of Selian patients are HIV positive.


or so, usually on foot. The volunteer brings medications and supplies, checks symptoms, and talks with the patient and family. When antiretroviral drugs became available in 2005, many patients became stable, and some of them went through volunteer training so they could visit and support others who were sick. Since 1999, Selian has never had a volunteer quit, though several have died.

In the current environment of cuts in reimbursement, US hospice administrators have been trying to find ways to reduce costs without compromising the quality of care. Increased use of volunteers (reminiscent of the early, grassroots hospice movement in the US) may be part of the answer. Selian volunteers are organized into local and regional groups with “captains” who have more training and who help to triage and report the needs of patients to the professional staff. The Denver Hospice has been studying this model and is considering implementing a similar program of regional captains who might be able to match patients with volunteers more efficiently.

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The Selian day care modelOne of the most innovative aspects of many African hospice programs is the day care model. Day care clinics are held once or twice a week at churches and community centers around the Selian service region. The sites rotate to serve a broader area. Thirty to fifty patients are invited to attend each day care clinic. Volunteers encourage their patients to visit the clinics, and Selian vehicles pick up those who can’t get there on foot. Local churches and community leaders are enlisted to provide hospitality and a simple meal to patients. Staff brings medicines, food staples, clothing, and other donated items to the site. Patients spend the day singing hymns, eating together, receiving medications, and visiting each member of the care team—nurse, chaplain, and social worker. Orphans and pediatric patients are welcome, and they take part in activities provided by the orphan and vulnerable children program.

In this way, the small staff can see a large number of patients. The day care clinics provide respite to family members, as well

as a support group to the patients. Care programs administrators in the United States are also considering this model for their ambulatory hospice patients.

We continue to learn from our Tanzanian partner as our relationship and Selian’s program mature. One of the most important things we have learned is that the spiritual, emotional, and physical aspects of hospice care are inseparable. Paulina Natema (one of the founders and long-time director of Selian Hospice) told us that in the early days, caring words, a gentle touch, a bed bath, prayer, and singing were sometimes the only tools they had for addressing people’s suffering. Paulina prayed for more medicine to alleviate the pain of the sick, and she is quick to point out that the best way to provide hospice care is to have enough pain medication. And yet, even when there was no medication, patients and families were grateful for care and reported improvement in their symptoms.

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Lora’s StoryEach one of the 3,300 patients served by Selian Hospice has a story. I’d like to share just one, so you can have some idea of how Selian impacts the lives of those who are dying in northern Tanzania.

When we met her in 2006, Lora was eight years old, an orphan who lived with her aunt in a hut with dirt floors. She wore a torn blouse with a colorful cloth wrapped around her and no shoes. She had tuberculosis and HIV and was on antibiotics. The TB antibiotics were very strong, so Lora was not able to start antiretroviral therapy for AIDS until after her TB was resolved. Shy but curious, Lora warmed up to our group when we started handing out stickers and snack bags of trail mix to the children. She was particularly drawn to Maggie, one of our chaplains, and sat on her lap as Maggie gently caressed her head. She enjoyed posing for our digital cameras and then turning them around to see how the photos looked.

After our visit, we checked in with Paulina about Lora’s prognosis. While

Paulina was always hopeful, she said that Lora’s health was precarious and that she might not survive long enough to start the antiretroviral treatment for her HIV. When another Denver Hospice group visited Tanzania in 2008, we learned that Lora had not survived.

While Lora was alive, the Selian team and her volunteer visited and provided her family with food staples, emotional and spiritual support, and medications. The nurses checked her vital signs and reminded her aunt when Lora was due for blood work. As she declined, the team went more often, making sure she was well cared for and comfortable. Without this support, Lora might have died much sooner, and she most certainly would have died with uncontrolled symptoms and in pain.

The Selian model of hospice care is spreading throughout Tanzania and elsewhere in Africa. The Namibian government has shown interest, and Zimbabwe is currently ramping up home hospice care services using the Selian approach. A grant from the

United States Agency for International Development has helped start 16 new hospice programs in the past five years. Selian Hospice serves as the clinical training center for these new programs.

Resources and Links:For more information on The Foundation for Hospices in Sub Saharan Africa, visit: www.fhssa.org.

For more information on Selian Hospice, visit: http://selianlh.habari.co.tz.

Lisa Motz-Storey is a chaplain and African hospice liaison at The Denver Hospice. She leads the partnership with Selian Hospice and serves on the Board of the Foundation for Hospices in Sub Saharan Africa.

Lora with Amy Rutledge-Nevills of The Denver Hospice


I was on call, doing hospice work in rural Maine. It was late in the day, and I’d just finished admitting a patient with whom I was not supposed to discuss dying, even though he was in a semi-comatose state and was, in fact, dying. Despite that, it had been a good visit; the patient was staying at a friend’s home, where he would be allowed to die in a nurturing setting. Getting there had been a problem for me. I was frustrated because I hadn’t caught an error in directions and overshot the correct exit by 20 miles. I was so frustrated that—at one point on the highway—I’d contemplated turning around and just leaving the patient, friends, and family, canceling the evaluation, admitting my deficiency of mind, and going home to suffer this momentary lapse in reason…and probably getting fired!

Fortunately, I was aware enough to notice that I’d lost my mind(fulness). I had the presence in the moment to complete the evaluation and admission in perfect form, glad for the opportunity to be of service and get someone who truly needed it into hospice care. I’d become aware of my frustration in time to bring my awareness to the moment, rest my mind in what I was doing, and give my momentary distraction enough space in which to dissipate.

The “problem” that night was that the burden of my mind and its frustrations were distracting me from the important nature of what I was doing and from a genuinely compassionate intention to help others at the end of their lives. The distractions were being on call, having another visit to make, feeling tired, and wishing to be in the coziness of home, not driving through rural Maine. I had become too focused on the missed exit and the factors I couldn’t control and had forgotten about the one thing I had some control over: my mind!

I left my first appointment and begrudgingly set off to a visit that I believed should have been done earlier by the primary nurse. On the way to the call, I was confronted with more challenges: fatigue, lack of street signs and streetlights, stormy weather, and darkness. All the external things I could ever hope to blame were in the picture.

I finally arrived at my destination, a wicked wind blowing outside, and entered the home apologetically. The patient was an elderly man who was supposed to begin on an intravenous morphine pump. Friends and relatives were gathered in the home—good people, guardians of the dying, the most essential blessings that anyone can

have. Standing at the bedside was the dying man’s wife. Her husband lay there, relatively unresponsive, eyes glazed, breathing rapidly. Looking at him, I suddenly remembered why I was there…it wasn’t about the pump! I began an assessment, and it was clear to me that he was not in need of morphine; he was in need of a guide, a midwife into death.

I sat next to him and began talking quietly, reassuring him that he was safe and in the good hands of those he loved and who loved him. Within three minutes his breathing slowed and his pulse thinned and began to disappear. I asked his wife to take my seat…quickly. At that very moment, two daughters arrived from out of town. The wife cried out, “Girls, quick, come here!” And as they came through the door and to the bed, their father—“my patient”—peacefully died, with his family at the bedside. He was free of pain and had not needed an unnecessary intervention.

This story is about the transformation of the mind—my mind. The night had been difficult, my mind out of sorts, distracted, off-kilter. It was only through mindfully returning to the present, becoming aware of my fundamental distractedness, returning to the needs of the present—the immediacy of the

By Jerome Stone, RN, MA

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moment—that I’d recognized the patient’s need to be shepherded into death. The dying man had needed my presence, not my assessment or my pump, or anything other than a graceful and compassionate attention to who he was and where he was going. Had I not summoned a state of compassionate presence in that moment, based on comprehending what he really needed, I would have failed to attend to his death and started the pump, “relieving his pain.” Instead, it was a moment of magic, one that I shared with the family.

Our ability to change the quality of our lives and the lives of others depends to a great extent on our ability to be present with the world, with others, and with the circumstances—all of them—that life presents to us. Our ability to be present with our patients depends on our ability to be here now, to be present—now, while reading this line—without distractions, without following any other thoughts.

Jerome Stone is an author and speaker on the topics of meditation, mindfulness, and compassion and can be reached at www.mindingthebedside.com.

This article is an edited excerpt from Minding the Bedside: Nursing from the Heart of the Awakened Mind. 2011.


of each breath, not thinking about breathing, without the need to comment. Simply watching your breathing.

Allow the breath to naturally breathe itself, not needing to change it in any way, giving full attention to each breath. Observe the full cycle of each breath, locating the very beginning of the breath as it enters the nose or mouth and following it as it fills the lungs and expands the chest and the abdomen, then comes to the gap where there is neither in-breath nor out-breath, before it turns around and makes its journey out of the body. Simply remain present for the cycle of each breath, being there, letting your attention gently float on the awareness of your breath.

After a short time, you may notice that the mind wanders off to thoughts of the past, fantasies, memories, or regrets. Or it may move to anticipation of the future, planning, wishing, and judging. You may find yourself thinking about what you’ll do after this exercise, what you have to do at work, things that you have to do. As soon as you become aware that the attention has moved off the breath, guide it back to the next breath with a gentle and firm awareness.

There’s no need to give yourself a hard time, saying, “How did I become so distracted?” Simply come back to this

breath, watching the breath and the arising thoughts without judgment, simply observing. Once again, bringing the attention to this breath, in this moment. Breathing in with the in-breath, breathing out with the out-breath. Feeling the movement in your body, the breath anchoring the attention in this moment.

When the mind wanders, bring your attention back to the breath, knowing that you can always use the awareness of your breath to refocus your attention, to return to the present. Whenever you notice that you have drifted from the present—when you become distracted, preoccupied, or restless—the attention on the breath can be a powerful anchor to this moment and to this state of awake stillness.

And now, for the time remaining, let go of all particular objects of attention, allowing yourself to simply be here, simply present. Breath moving, sensations in the body, sounds, thoughts, all of it coming and going…allowing all of it…and dropping into being, into stillness, present with it all, as it unfolds, complete, as you are, whole.

And...relax.

For helpful information and free resources on meditation, visit Jerome Stone’s site www.whatmeditationreallyis.com.

Sitting on a straight-backed chair, couch or cushion on the floor, allow your body to become still. Your back should be straight without being stiff, your posture relaxed, awake, and dignified. The hands can rest gently on the knees or in the lap. The eyes are open, simply resting the gaze on whatever is in front of you, without thinking too much about what you’re viewing. Settling into this moment, begin watching the breath.

Become aware of the fact that you’re breathing. Become aware of the movement of the breath as it flows into and out of the body. Feel the breath as it comes into the body and as it leaves the body. Simply remain aware of the breath flowing in and flowing out, not manipulating the breathing in any way, simply being aware of it and noticing how it feels.

When your mind becomes distracted, simply return to the breath. No commentary. No judgment.

Allow yourself to be with this flow of breath, coming in and going out. Notice the feeling of the breath as the lungs fill with air on the in-breath and deflate as you breathe out, the chest expanding and collapsing, perhaps feeling the breath in the abdomen, rising as you breathe in and flattening and sinking as you breathe out. Allow your attention to gently ride on the sensation

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Certified Nursing Assistants (CNAs) or Nurses’ Aides are the front line of hospice care. They often develop an intimacy with hospice patients because the care they provide is so personal. Of all the members of the hospice interdisciplinary team (IDT), CNAs probably see hospice clients the most. (Hospices have a team approach to care, and the IDT is typically composed of a physician, nurse, social worker, chaplain or spiritual counselor, and CNA.) Tim Ashnoda has worked for six years as a CNA for Family Hospice, a small, Boulder-based hospice. He shares some of the challenges and rewards of his work.

My typical workday involves traveling from place to place to bathe and groom people. I dress people, help them transfer from bed to wheelchair and back again, brush teeth, shampoo, wash and comb hair, shave men, clean and file fingernails. Talking with patients and their families, listening and educating about the dying process, and updating nurses about the patient’s current status are other daily tasks. We keep people clean and keep them company. I typically see three to five patients a day for about an hour and a half each.

It’s profound, working closely with dying people when they are so vulnerable. I can significantly affect people’s quality of life through small acts of kindness, just because they are in such an intense phase of life. It’s also rewarding to be part of a team that is dedicated to making what I consider to be a meaningful and positive difference in the world.

The biggest challenge I face in my job is a toss-up between the relatively low financial compensation—which requires

me to work more hours than I would, ideally, to support my family—and the intensely social nature of the work, which reduces my desire to connect with friends in my free time. I find that spending time alone and in nature is a necessary part of my personal self-care. What also keeps me going is the support I receive from my hospice co-workers, from other caregivers involved with patients, and from my family and friends. I draw strength from the earth itself and from my own faith, which I would describe as holistic, eclectic, and mystical. I see death as less of an ending and more of a portal. Life and death are parts of the same dance. I believe there is something beyond this realm, but, if there isn’t, perhaps eternity lies in the moment? If that’s the case, then helping my patients have good moments has existential or inherent value.

The stressful parts of the work for me are the time and travel involved, the somewhat hectic aspect of going from one social context to another many times a day, and dealing with the institutional and overly profit-oriented aspects of certain nursing homes. I do know that it’s far easier for me to enjoy this work if I stay compassionate, gentle, and patient.

To some degree, what drew me into hospice was an interest in the spiritual side of the work, the questions about the meaning of life and is there life after death? I haven’t found any answers, but it’s all been affirming of the sanctity of life and of death. In some spiritual traditions,

the moment of death is considered the most important one in a lifetime. Death is a great reliever of suffering, and it’s comforting to know that whatever level of pain exists, when there is no other way out, death rescues us from suffering.

I don't really get overwhelmed by the “death aspect” or the intense emotionality of my hospice work. That’s partly due to the constant exposure, but my own proclivities are probably more of a factor. When I first started in hospice, I heard about a CNA who quit after her first patient died. I thought: How did that person ever pick this job?

I came to this work in my early forties as a second career. I’d been a teacher, and I think my life experience was helpful. If I’d been just out of high school, I don’t know if I would have

had the same capacity to stay grounded and overcome my own fears. People who become hospice caregivers tend to be very supportive people, generous of spirit, and compassionate.

Occasionally there are individuals who are not a good match. Nursing home workers tend to be overburdened, and some facilities aren’t properly staffed because of the profit motivation. This means that caregivers can’t provide the quality of care they would like and become callous because of the stress.

I have a hard time with illness—not so much with the concept that the body ceases. It’s the suffering that can take place beforehand as people lose capacities and are grieving. It can be hard to be around intense suffering, but on a day-to-day basis, I experience this difficulty only occasionally.

I don’t really get overwhelmed by the ‘death aspect’.

By Tim Ashnoda

Life as a Nurses' Aide


Paradoxically, the universality of death brings out the uniqueness of each person, and this really delights me. Of course, some patients have found their way deeply into my heart. I’m 48 now, and I’ve been particularly moved by working with people who are close to my age. I’ve worked with three patients who, in middle age, died of Lou Gehrig’s Disease (ALS), a degenerative, neuromuscular illness. This condition involves a particular intensity of psychological challenge as one gradually loses control of every physical aspect of body and strength while the mind remains clear and intact. Denise, Norm, and Mark inspired me greatly in the way they lived as they died. There were times when all three, when quite debilitated, could laugh, smile, and enjoy themselves.

Mark was a year younger than I. As well as having ALS, he was HIV positive, but he hadn’t developed AIDS. He’d been really into dancing and his body. Certainly he had moments of intense suffering—grief, depression, and immense frustration. Many times after helping him shower, I would move his limbs in range-of-motion exercises to keep him limber. He really enjoyed that. He’d put on music and it was almost like we were dancing. He’d bop his head back and forth; he still had control over his neck but was losing the muscle control of his lips and tongue. Still we’d have complicated conversations about spirituality and society. It’s very difficult to let someone else take care of your body, especially if you’re younger. Self-consciousness does erode, although perhaps not for everybody. It was hard for Mark to surrender and let someone else wash his body—because

of his former physical prowess. To me, it seemed more of a sacrifice for him as opposed to someone who watches their physicality dwindle, decade after decade.

I would say that I established a friendship with Mark, and this gets into the realm of boundaries. I’m not really “friends” with my patients. We have a professional relationship. Probably one of the most challenging situations I’ve faced was with a son who was looking after his father in his own home. This man was in the process of early retirement and so was frequently home during the two years I took care of his father. He was a very interesting and intelligent man, and we had a lot in common, but he talked so much, it was distracting and hard for me to work. When his father died, he really wanted to continue our relationship and be my friend, but I didn’t want that, and it was very difficult for me to tell him. It pulls at my heart that I have to let go of the living; most family members are quite gracious and understand professional relationships, but this man was particularly challenging. I still feel guilty that I couldn’t be his friend.

Sometimes it’s the spiritual suffering of the dying person that’s the hardest to bear. One patient I took care of, maybe just a couple of times, had MRSA (a serious staph infection). I had to “gown and glove” and wear a mask when I was there. The patient couldn’t really speak, and he didn’t have any family members.

I gathered that he was alienated from his family; I don’t know if it was due to alcoholism or domestic abuse, but there was nobody there for him. He was friendless and dying alone. I felt a great sense of compassion, but because of the mask and the surgical gown, I felt this thick boundary—that was also maybe my own judgment or discomfort. This patient seemed unreachable and, at some level, really damaged. Though it’s sad to say, I was relieved that he died fairly soon after, so I wouldn’t have to go into his room again.

As a CNA I’ve learned that dying people are mostly living. They’re dying, but they’re doing a lot more living than they are dying. It’s affirming how much quality of life is possible, especially at the end. The whole purpose of hospice is to increase that quality of life, and that, for me, is what makes this work so fulfilling.

[I]t was almost like we were dancing.

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Harpist, singer, composer, clinician, and educator, Therese Schroeder-Sheker founded the palliative medical field of music-thanatology and the Chalice of Repose Project (www.chaliceofrepose.org). She serves as the academic dean at the School of Music-Thanatology of the Chalice of Repose Project and chairs programs in Contemplative Musicianship and Music-Thanatology at St. Catherine University in St. Paul, Minnesota. Readers are invited to contact her at [email protected].

NTM: Where did the name and concept of “music-thanatology” originate?

Therese: I am the originator of the term music-thanatology, but it would be good to nuance that. The word Thanatos is Greek and refers to the Greek god. The two Greek archetypes, Sleep (Hypnos) and Death (Thanatos) were brothers. Thanatology is practiced in many different kinds of disciplines: medicine, psychology, theology, grief counseling. The use of music in the care of the dying and my coining the term music-thanatology occurred in the ’80s, though I didn’t begin our work with that term. In the beginning, I tended to use very feminine terms. I discovered that when I was speaking with chaplains and people involved in end-of-life pastoral care programs, they intuitively understood the linguistic impulse I had in evoking the language of midwifery. I was so spiritually struck by the relationship between birthing and dying and wanted to bring them together. To chaplains in the ’80s, I referred to our work as spiritual, sacramental midwifery. But when I spoke to clinical groups, doctors, and nurses, I very quickly discerned the need to use a different kind of language. So music-thanatology became the principal term used.

NTM: When did the practice of music-thanatology mainstream medicine?

Therese: 20 years ago, in 1992! I worked for 19 consecutive years in Denver, during the course of which I researched and did empirical trial-and-error work with thousands of people who were dying. I was invited to speak to medical groups and deliver medical grand rounds at several medical centers nationwide. I published intensely. I worked in teams of doctors and nurses. In early 1992, I received word that a hospital system had voted to welcome music-thanatology as a palliative medical modality. This meant that they would receive us and our work and offer it to patients as a standard component of supportive end-of-life care. Because our work was accepted as a medical modality, we’ve never used the language of complementary medicine or alternative therapy when referring to our efforts.

NTM: Can you give an example of how this type of palliative, prescriptive music works?

Therese: Music-thanatology is an evidence-based praxis and so the documentation of deliveries and outcomes is crucial for us, as it is in any nursing intervention or medical modality. Each human being is different. People don’t all hear and receive music or sound—or words—in the same way, with the same intensity or timing. The musician-clinician documents outcomes by noting both quantifiable and qualitative, measurable essentials before, during, and after a session: heartbeat, pulse, respiratory patterns, temperature, skin, and so forth. We begin a session in silence, focus on the

breath of the patient, and play music that synchronizes with their heartbeat, pulse, and respiratory patterns.

The efficacy of the prescriptive delivery is not dependent upon the patient’s ability to hear, for the entire surface of the skin functions as a membrane, particularly so, as he or she becomes more vulnerable. The musician-clinician is the external auditory stimulus, stronger and steadier than the vulnerable patient, who is often in physiological pain or experiencing interior suffering.

With the work of a great musician-clinician, in the space of 18 to 20 minutes, the patient’s breathing patterns can change in quality and timing, the pulse usually decreases significantly, the anxiety can be lessened, the projectile vomiting can stop, the agitation and tossing in the bed can be lessened, relaxation can be achieved, shown in the

face, hands, and body muscles, a contractive state can open, a deep restorative sleep is usually entered, and so on. Many patients require less opiate medication following a vigil, and this amazes physicians.

The timing and intensity of all the variables differ from person to person.

Sometimes, as a clinician, we see a person only once, sometimes several times. The dying are living intensely and perform their dying at their own speed, not at anyone else’s speed. This explanation is probably far too brief, but I hope it helps a bit.

NTM: How does music-thanatology deliver relief for spiritual suffering?

Therese: Oh! Now I have to be graphic. If you have projectile vomiting and haven’t slept more than 15 minutes at a time in three days because you are in so much physiological pain, then you

Prescriptive Palliative MusicHow Musician-Clinicians Serve the Needs of the DyingNTM’s Marcie Cole spoke with Therese Schroeder-Sheker of the Chalice of Repose Project.

We begin a session in silence, focus on the breath of the patient…


don’t usually have any reserve of energy remaining. Energy is needed to work psychologically, emotionally, or spiritually with your own thoughts and feelings or interiority about your own impending mortality and the meaning of your life. Dying is an accelerated, intensified living, even while we are walking the final mile of our journey, so, in helping people deal with very explicit physiological symptoms

(often called symptom management), you can go beyond, you can open the door to facilitate the interior work.

It’s very hard to make meaning of the mysteries of my life when I am stuck inside projectile vomiting. I can hope to find meaning in those biographical mysteries and perplexities when I am quieter, when I can breathe, have space,

and enter the depths. For example, a young woman who is going to be dying soon is very aware that she is leaving a spouse and two or three little ones at home. She knows her children will not have their mother. She will have “inner work” to do to process her upcoming death. She can’t do that when her physical symptoms are so difficult and extreme.

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Therese Schroeder-Sheker, founder of music-thanatology

Many patients require less opiate medication following a vigil.

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In our experience, we note that with each successive visit, the music-thanatologist can often see that the way, the manner, the intensity of the efficacy of the prescriptive music changes dramatically and increases over the course of the second or third visit. Like tilling a field or garden. The patient may begin receiving the beneficial aspects of the music, at first physiologically, but then, over time, the music can facilitate depth; it can help address the interior dimension. I see the music moving at all three levels: body – soul – spirit or, if you prefer, thinking – feeling – willing. People use different terms to describe their wholeness, but it is the whole person who begins to be affected and aided by the delivery of prescriptive music, not an isolated part.

NTM: Can you explain in greater detail the healing transformation that can occur within dying?

Therese: The enormity and layering of what goes on when we are living with our dying is impressive. It may look to some as if our worlds are becoming smaller as we die, but they are often also becoming more permeable, and in many cases, they are expanding at another level. I am unable to understand death as a single physiological event that happens at the end of a biography—boom—and you’re gone. I think that during the normal course of life, growth, and maturation, we are invited to die to old ways of being and former identities many times over, like pruning a tree. The experience of a truly broken heart speaks to this—a person is not the same after that threshold. A new person emerges.

There is significant medical literature about living with terminal illnesses, and the transformative news is that many people live much more in the last six months of their lives than they did in the ten years before. So I would say that we cannot and do not attempt to compensate for anything in a human biography, but the delivery of prescriptive music facilitates depth. Inside that context, the patient accesses his or her own depth and this includes personal spaciousness. Sometimes one can recover a fundamental unity—reunite with those parts of Self that have become lost, abandoned, or forgotten during the journey of life.

NTM: Has anyone tried to take music-thanatology into the direction of healing terminal diseases?

Therese: There are countless books that put the words healing and music together in the same sentence, but we approach that terrain with great care and a different orientation. The commitment my colleagues and I share is to the care of the dying. Every single one of our referrals has a DNR [do not resuscitate order] or some similar admit status. My life’s work has been to serve the needs of the dying, their loved ones, and their families. I don’t ever use the language of “healing music” and not a single one of my colleagues or our faculty members refer to themselves as healers. We do

however place the locus of healing inside the personhood of the one who is making their transformation, their transition. We frequently speak about deathbed-healing and are careful to differentiate that interior healing from curing. Healing and curing are worlds apart. We have attended thousands of patients and can say that it is possible to die whole, so that healing happens at an interior level, and this is different from curing.

NTM: Can you go into more depth about how music-thanatology works with the physiological systems?

Therese: I use this language with extraordinary focus. The principles

of prescriptive music cannot be well served in brevity, but I can offer some indications that might help. There is a relationship between the melodic content of any delivery of prescriptive music and thinking and the nervous system. There is a relationship between the harmonic content of any delivery of prescriptive music and the circulatory and respiratory systems. There is an interpenetrating dimension in which the circulatory and respiratory systems coalesce with and are affected by metabolism. By extension, all uses of rhythm or metered music or unmetered music can help stimulate or suppress specific physiological conditions. We speak about binding and loosening processes, excesses, and deficiencies. These are fundamental indications, not

rigid formulae, but can take any sensitive musician-clinician far.

NTM: Regardless of having good intentions, I understand that the delivery of prescriptive music cannot be done by someone without an education or formation. What are the necessary steps to becoming a certified music-thanatologist?

Therese: Great point! I can go to the bookstore associated with the medical school and purchase surgical tools, but that does not mean that I am a surgeon or that I have learned how to perform surgical procedures. To learn how to practice music-thanatology, you need a formal, vigorous, disciplined education and formation. I’m an advocate of formal mentors, substantive internships, residencies, and very intensely committed feedback systems.

The music-thanatology curriculum is broken down into two programs. We are able to serve more people who are interested in learning the basics through our first stage, which we call the Contemplative Musicianship Program. That is a one-year program and is the prerequisite to the school of Music-Thanatology, which is a two-year program. Both are very rigorous but exciting programs and both are interdisciplinary and cross-disciplinary. In music-thanatology, we focus on five different kinds of educational tracks: academic, musical, medical, clinical, and spiritual formations. These draw upon seventeen different academic disciplines.

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NTM: Is this the equivalent of a master’s degree?

Therese: No, my academic colleagues have told me in no uncertain terms that it’s the equivalent of a three-year doctoral degree. I am in the early stages of developing a doctoral program in music-thanatology at a university now. We look forward to that in the future; that kind of institutional piece takes time and entails the teamwork of many people and several governance systems.

NTM: Do you have to be a fairly accomplished musician in order to go through your program?

Therese: Ah! How one enters our program and how one leaves! Very different stories! Actually, our student profile reflects surprising diversity: the mature adult—the lawyer, musician, social worker, engineer, or parent, nurse, businessman and woman, psychologist, pastor—who has always loved music but who typically does not have an undergraduate degree in music. Some do have degrees in music, but have lost their deeper relationship to it during the vicissitudes of life. Most have either had an experience of the death of a loved-one that went really well or really poorly. They all arrive with love, intelligence, maturity, experience, successes, and

failures, garnered from all the things they’ve done in their lives, formal and informal. Without exception, they tell us that they feel deeply called to do this work. By the time they complete our requirements and leave to work in the world, they have grown enormously in musical artistry and clinical acuity.

NTM: The harp seems to be preferable for this work; could you explain why?

Therese: Did you know that our senior faculty members did not start their musical educations as harpists? Most started out as pianists. In order to deliver prescriptive music, one needs a polyphonic instrument—many notes can be played simultaneously—and an instrument that is portable. You need an instrument from which you can draw low, resonant, warm, and melting sounds. And you need an instrument by which the tonal substance that is created will not be bodily or emotionally invasive to the space around and within the very vulnerable patient. If we could illustrate: If you have cancer and your cancer has metastasized to eight or sixteen additional sites, and you’re dealing with the pain of tumors pressing against your nerve endings, and you are in a small intensive care unit—that is a specific and challenging terrain that is worlds different from the concert stage. There

is very little physical space in the ICU, further complicated by monitors, pumps, and life-support systems to which the dying are often connected. Certain kinds and qualities and intensities of sound are going to be contraindicated because they would be stimulating rather than anxiolytic [calming].

NTM: Is there a short story that you can share for us that would exemplify the work of a music-thanatologist?

Therese: There are so many beautiful people … and souls. I’m seeing their faces go by—it is very hard to choose. There is the one who was in a deep coma for a week, who regained consciousness and spoke in great detail about the harp music we played at her bedside. I remember a patient who had been completely paralyzed and contracted with advanced multiple sclerosis; she received the music so deeply that she entered a profound state—we’ll call it lucid sleep or conscious dreaming—and later dictated a letter to the nurse. She said that she had been freed, made whole, had been walking in the clouds. There is another whose metastasized cancer had taken so many parts of her life, but her hearing had expanded far beyond the norm. She could hear conversations whispered in rooms several hundred feet away. She turned to me and said: “Oh, Therese, if they only knew how powerful the music really is, they would never have the courage to play.”

NTM: Therese, the work you are doing with music-thanatology is so needed and important. Is there an upcoming event or breakthrough that we should know about?

Therese: Well, we have three upcoming thresholds that we can mention today. I am thrilled to say that we are launching two new collaborative educational programs. They will both be at St. Catherine University in Minneapolis/ St. Paul. We are also publishing a series of 10 to 14 texts that will amount to something like an encyclopedia of contemplative musicianship and music-thanatology. And, last but not least, we committed to a third outreach collaborative work that will help large numbers of people by saying yes to the making of a wonderful television program that will be broadcast on PBS nationwide. Maybe you will keep us in your thoughts and prayers, and we can let Natural Transitions Magazine know more in little updates in the future!


The Chalice of Repose Project is the first music-thanatology organization in the world, and has a three-fold mission: palliative medical end-of-life music-thanatology clinical care services, educational programs, and publishing.

• Lovingly care for the physical and spiritual needs of the dying with prescriptive music;

• Make patient-care services available to individuals and loved ones during the weeks, days and hours leading up to and including the moments of transitus;

• Educate clinicians, caregivers, administrators, institutions, and the general public about contemplative musicianship, music-thanatology, monastic medicine, and the possibilities of a blessed, peaceful or conscious death;

• Model and integrate these contemplative values into daily life, work environments, patient care programs, educational curricula, and all work-related initiatives.

The Mission of The Chalice of Repose Project is to:

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What is a good way to start the conversation with a family that has been avoiding the topic of death?As a hospice counselor, I am often asked to be the bridge person between the family and the challenging topic of death. Even when a member of the family comes onto hospice, many families have avoided talking about what is really going on—that a family member is coming close to the end of their life. Facilitating a discussion about death is a primary role of any spiritual counselor. Using creative questions can open the door to a topic that’s being avoided.

Here are some examples I have used successfully:

•Have you ever wondered about where we go after life here on earth ends? (If they believe in heaven: What do you think it might be like there?)

•Do you ever wonder what it might be like to see your uncle Joe/ your sister/your beloved one again?

•Have you ever had a near-death experience? (or a really powerful, vivid dream?) Have you ever had a mystical experience that left you pondering the Great Mystery? Have you witnessed something that you could not explain?

•Have you ever wondered how the dream world connects to the afterlife?

•Are you able to recall your dreams? If so, have you ever received guidance or a prophetic (intuitive) sense about something going on in your life?

•What was your experience like when _____ (a loved one) died?

•What brings you meaning in life? Is there something special (a gift) that your illness/disease is bringing you at this time in your life? or has brought you recently?

•What do you still wish to accomplish while you are alive? Are you writing these things down? Can you visualize them happening? Who could you ask for help, if necessary, to accomplish them?

•Whom do you still need to speak with or thank, forgive, say goodbye to before you die?

Don’t you find your work depressing? How do you keep going, day after day?Actually, hospice work for me has been some of the most life-giving, meaningful work that I’ve ever done. My guess is that the reason for this is at least twofold. For one, whenever I have a conversation with someone on hospice (or their family member), we don’t waste much time. We usually go into a deep and profound place very quickly. We may chitchat for a while, but I’m usually the one who has the permission to probe deeper if I need to, and people are usually receptive to that because they realize they don’t have lots of time to waste. I very much enjoy having those meaningful, heartfelt conversations with people.

Another reason I have found hospice work meaningful rather than depressing is the diversity I encounter. There is never

a dull moment with hospice: I am always meeting new and unique individuals and families, and I’m constantly learning from them. This has led to greater flexibility and an ability to roll with the punches.

As I look back over the years I have worked for hospice, it has been rather like having a gradual near-death experience. All that I learn and hear about death and grief has expanded my theology and view of life. Speaking with people who are so close to the experience of death and grief and hearing some very mystical stories and experiences—not to mention experiencing some of my own—have given me a sense of what it will be like to face death myself, and my life has been forever enriched and transformed because of it.

For anyone interested in learning more about oneself and deepening one’s understanding of the universe and the mystery of life and death, I highly recommend becoming a volunteer with your local hospice. This is a wonderful way to contribute to your community and to give yourself a huge gift in return!

How do you comfort someone in deep grief? Are there any good words to say to them?Simply being with a person in deep grief can be very helpful. Be attentive and listen deeply to them with an open heart. Reach out to them with love, as their tendency will be to hide in their own cave.

How do you talk with people who don’t believe in God—or in an afterlife?I remain open and allow them to have

Questions for a Hospice Counselor

By Rev. Maria Dancing-Heart Hoaglund


their point of view. As the opportunity arises, I do suggest that they remain open to the possibility that there may be more than meets the eye in this world.

How can I best approach a person who’s angry at God because of their circumstances?At first I listen to them and hear them out. Usually a person who’s angry at God is feeling victimized on some deep level, and they probably have good reason to feel this way. As I listen to them, fully and attentively, their anger at God tends to soften. In this way, we can often get to a deeper place emotionally and begin to unravel what’s really going on in their spiritual life and relationship with God.

What is the best way to talk with children about death?Do it naturally and in a positive way; use any opportunity that comes along that you intuitively know is the right time and place to share. Children are so open spiritually that sometimes they can and will be our teachers in this area. Be open to whatever they might say in response to what you say; and be open to be taught by them. They are much closer to Spirit than we adults are, so you may be surprised that they’ll be able to see things that you cannot. One example is the story of a 17-month-old who waived bye-bye to Grandpa—who had just died—that I mentioned in my first book, The Last Adventure of Life.

As a hospice worker, how do you take care of yourself when you are grieving?First, this is not always easy. I find that I can cry much more easily if I

am grieving about something myself. Usually, I allow the tears to flow, as this can give permission to those I’m with for their tears to flow, too. But when I am in deep grief, I must make sure that I’m taking care of myself properly by taking a “mental health day” away from work, or performing or attending some kind of ritual to help me cope with my grief. Taking more time than usual for my own spiritual work and well-being can help, too.

What enlivens you the most about your work? What is most challenging? What enlivens me: The depth of sharing in conversation that I engage people in, the variety of people I am honored to meet and talk with, and the fact that I get to plant seeds and new ideas in people’s minds. What is most challenging: Sometimes, working within a rigid system that has its own agenda, and dealing with people and families who take a victimized role.

How do you talk with a person or family who has a very different belief system or outlook on life than you?Mostly, I wait for them to lead the way. I listen to what they share while withholding judgment. Chances are I have something to learn in these situations.

What is the difference between a bereavement counselor and a spiritual counselor?Often these two dovetail, as there is a piece of grief to be dealt with in most counseling. So one way to think about it might be that bereavement comes under

the umbrella of spiritual counseling, which is much broader and, in the context of hospice, has more to do with helping people find what brings meaning to their lives when unexpected change occurs.

What is the most important thing to keep in mind when caring for a person close to death?To honor them, who they are, their desires and needs. Let them be in control as much as possible. Listen attentively to them; they are likely to give you helpful cues.

How can I be with someone who is getting ready to die? Will they even be able to hear me? Probably the most important thing you can do for someone who is getting ready to die is to simply be with them, in a gentle, caring, quiet way. Watch for the subtle cues that they will give you; they will probably let you know in their own way what they would like.

Usually a person close to death has one foot in this world and the other foot in the next world. So they will not be very focused or grounded in their being here on earth. You will need to honor their privacy and the fact that they are not “all here.” It is best to let them guide the way. Even if they cannot speak with you, they may wish to hold your hand or have you close by. They may be able to squeeze your hand to give you a “yes” or some kind of sign that they agree with you, and so forth.

And, yes, they will most definitely be able to hear you. If you doubt this, you might ask them to squeeze your hand if they

26 | SPRING 2012 |

can hear you. In the Tibetan Buddhist view, the soul can continue to hear for 49 days after the death has occurred. In that tradition a priest or someone from the temple comes to read to the soul of the dead person for at least seven weeks after the death has taken place.

I sometimes have the opportunity to share with people who have recently lost their loved ones. Some have told me that they wished they had not had their loved one’s body whisked away after their death. Please keep in mind that you can take plenty of time with your loved one after they die. It is typical for the staff from the funeral home to come soon after the death to pick up the body, but you can ask them to come some hours (or even a day or two) later. Please ask for what you and your family need at this time.

I have also heard of people who regret not being there when their loved one passes. This is understandable, but the dying one has his or her needs, too. Sometimes it’s easier for them to leave when their loved ones are not right there with them in the room. Other times, when it’s time to go, they have to go—there’s no turning back or waiting. So, please, honor the process. Whatever happens, it is usually in some kind of divine order, and it’s best if we can accept it the way it is, even though it may not have happened in the way we hoped it would.

A couple of books (besides mine, The Last Adventure of Life, Bridge to Dreams Publishing, 2005) I recommend are Final Gifts by Maggie Callanan and

Patricia Kelley (Poseidon Press, 1992) and Embraced by the Light by Bettie Eadie (Gold Leaf Press, 1992). These are both exquisite books that share courage and hope for families faced with a loved one who is getting ready to die.

Are you often with a person who’s dying? What is it like?Interestingly enough, I find that I am rarely with a person when they die. Usually, by the time the death occurs on hospice, the family is comfortable enough with the process that they do not expect or require a spiritual counselor, chaplain, or even a hospice nurse to be with them. Sometimes the family requests a nurse to come out and verify that the death has occurred.

When I am at the bedside when a death is happening, it is usually a very sacred experience, not unlike a birthing experience. There’s a sense in which being present takes your breath away. Sometimes you can almost feel another presence in the room.

Something to keep in mind is that no one can predict exactly when and how someone will die. Typically it is a very gradual, gentle process. The person’s breathing slows way down and eventually just stops. I think of the quote: “And dying, you will leave your body as effortlessly as a sigh.” (Psalm 121:8, Stephen Mitchell’s translation) Another favorite quote along these lines is: “Death is absolutely safe! Like taking off a tight shoe. …” (Emmanuel)

A profound death I was blessed to be a part of is described on pp. 178–180 in the second edition of my book, The Last Adventure of Life. It describes how beautiful death can be, even when there’s been some degree of suffering (and stress) prior to it. The true key to the dying process, as with all change, is to relax. If you can relax, you can get through anything, even the biggest change we go through in life, the final transition.

What’s the most important thing you have learned from doing hospice work?I have learned and been gifted with so much! First of all, my theology has expanded so—like having had a near-death experience myself. Secondly, my intuition, my ability to be more flexible in life, and my awareness of the interconnectedness of all have all developed in a strong way since doing hospice work. If you haven’t already, you’ll find these pieces and much more shared throughout my reflections on this work.

Have you encountered mystical experiences on hospice? If so, how have they affected you?Yes, by all means. I have had my own mystical experiences. I have also heard from many people about their mystical experiences. These have helped me see that there is so much more than meets the eye.


What is the most profound experience you’ve had doing hospice work?Witnessing a very swift death of a man who was struggling with his breathing was probably the most profound experience I’ve had. I anointed this man with essential oils, as he had requested. Within minutes his breathing slowed way down. At one point he opened his eyes to gaze above him. Then, a few minutes later, he took his last breath. (The entire story is shared in Chapter 7 of my book, pp. 39–40.)

What, in your opinion, would help Americans better understand death?I believe that Americans would be better off if they were more open and available to work with the inner life. Things like prayer, meditation, yoga, Qigong, and paying attention to one’s dream world could make a big difference in people’s lives—and their becoming more comfortable with death and the dying process.

Rev. Maria Dancing-Heart Hoaglund worked as a hospice chaplain in the great Northwest for many years. She is an author, energy healer, and spiritual counselor who also focuses on the broader area of transitions and holistic care. She now lives in Sedona, Arizona. For more information visit www.changewithcourage.com.

This article is an edited excerpt from The Most Important Day of Your Life: Are You Ready? By Rev. Maria Dancing-Heart Hoaglund, (Bridge to Dreams, 2010)

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MEdIA

With the publication of The Best Care Possible, Ira Byock has made an important contribution to the national conversation about the goals of medicine, the provider-patient relationship, systems and policies, and the quality of care for the seriously ill and their families. In his lucid style, Dr. Byock uses compelling stories of real patients and colleagues to unpack the central issues of that conversation: life and death decision making; the distinctions between treatment and care, cure and healing; the true role of doctors; the true nature and scope of palliative care; and how we can and must transform systems and, indeed, society to fulfill the human imperative to care for one another.

The stories serve to wrap—literally—flesh and blood around the stark demographic, systemic, and societal challenges we face as the baby boom generation enters old age and we continue to reap both the benefits and the burdens of advancing medical technology and interventions. Infused with the authority of more than three decades of clinical practice and advocacy, Byock’s writing has all the drama of a novel, the energy of a polemic, and—at times—the tenderness of a love letter to his patients and his profession.

For Byock, palliative care is “the best care possible” because it not only expertly treats pain and symptoms of disease and side effects of aggressive curative treatment, but it attends to the well-being of patients and their families, paying close attention to individual goals, matching treatments to those goals and preferences, and providing support all along the way.

For readers not familiar with the field of palliative care, The Best Care Possible is the best introduction to the panoply of issues involved in the care of the seriously ill, aging, and dying. For those of us already immersed in the field, this is familiar ground.

But there is a new urgency in this book. Its release this year is specifically intended to get the attention of candidates and pundits during the presidential election. Byock says, “How we die is a public health crisis, and care for people through the end of life is poised to become a generation-long social catastrophe.” Words like crisis, catastrophe, disaster, and disgrace punctuate the volume, ratcheting up the rhetorical tone from commentary to clarion call. Underpinning the moving stories is an insistent invitation to galvanize a movement to transform not only healthcare systems but societal attitudes and consumer expectations—to do for aging and dying what the “birthing movement” did for labor and delivery, and more.

The cattle prod of his language suggests that Byock is not just watching the tide recede before the “silver tsunami.” It feels more personal, that time is growing short not just for healthcare and the country, but for Byock himself as a person and professional; that his opportunity and ability to make a difference—while still in full force now—is not unlimited and perhaps he can see a distant horizon. It is a collective horizon. We should all stand up and give it a good look.

Jennifer Ballentine, MA, is executive director of Life Quality Institute (www.lifequalityinstitute.org) and principal of The Iris Project (www.irisproject.net).

Published by Avery Books Penguin Group, New York March 15, 2012 ISBN 978-583-33459-1 Hardcover, 336pp, 6x9

Book ReviewThe Best Care Possible: A Physician’s Quest to Transform Care through the End of Life by Ira Byock, MDBy Jennifer Ballentine, MA


As an 11th Hour volunteer, I was prepared. I had taken a long training course, asking questions and fretting about the details. I had read articles and books about what I am supposed to do when I sit with a person who is actively dying. In the end, I learned that it is simpler than that. It is really about love, for us humans, in this business of living and dying.

I could tell you so many details about Florence, Louise, or Jim—all people with whom I sat in their final hours of life. I could trouble you with the frightening sounds of labored breathing or winces of pain. I could describe the way in which their bodies looked—cold and stiff, with mouths hanging open, eyes glassy. But that is not what it is about. Love is what it is about. Love is the common thread in these stories.

Florence’s kids had been holding vigil by her bedside all day, and I was there that night just to give them a break to eat dinner. While I was with her, Florence had a last surge of energy and sat up, requesting chocolate ice cream. Licking the spoon, she looked deep into my eyes and asked me if I had children. I explained that, no, it was too late for me. She held my gaze and said, “It is never too late for kids. You can adopt. My kids have made me laugh and cry and are the most important thing in my life. Do not miss this opportunity!” She fell asleep moments later, the ice cream cup still in her hand.

Louise was unresponsive as I sat by her bedside and reassured her that everything would be okay, that she was not alone on this journey. Although her neck was in an uncomfortable- looking position—cocked to the left, her mouth hanging open, her few remaining teeth jutting out of her dry lips—I decided not to re-position her for fear of disturbing her peaceful state. She had been agitated and in pain earlier in the day, so this newfound peace was sacred. After my time with Louise was over, I gently thanked her for our time together and told her not to worry, the next volunteer was here and would keep her company. It was only then, when I stood up, that I realized why Louise’s neck was cranked in such an uncomfortable position. Off to the side was a picture of her late husband taped to the wall, just at her eye level. He was waiting for her and helping her to make this transition. My eyes welled with tears, humbled by the power of love. Even though he wasn’t in his body anymore, their bond was obviously so strong that just by seeing a picture of her husband’s face, Louise was encouraged to continue her journey out of her body, back to him.

I sat with Jim for three hours, and I think I might have said ten words to him in that time. Mostly I just held the space for his inner work, for tying up his loose ends, for shedding the vehicle that had carried his spirit for the past 58 years. For reasons unknown to me, no family was present. How perfectly odd, I thought,

that a complete stranger would enter his world at such a private time. Usually I attend to relieve the family for a few hours, but in this case I was the ‘family.’ I was all he had to support him as he transitioned out of his body. Mostly I just held his hand and witnessed his unique and beautiful process of the sacred act of letting go. He was unresponsive, so he was at the very end. Once or twice, when he grimaced or moaned in pain, I encouraged him and told him that it was all right, that he was doing very important work, and that he was doing so well. At one point, he threw his arm in the air and made a fist and yelped in pain. As he slowly lowered his arm, I told him that I was there and he could hold my hand if he wanted to. I slowly moved my hand close to his. He let his hand fall into mine and squeezed it very hard. He picked at his clothes with his other hand and was thrashing his feet. I held his one hand tightly, shut my eyes, and took long, deep inhales and exhales that were not even audible. His spirit caught my thread, and we were in synch. As his breath slowed down, his fingers slipped from mine, one by one, as he drifted back to a peaceful sleep. My role was to validate and witness his experience by being present for it. This time, an open heart and a slow, steady breath exuded the deepest power of love.

Jessica Richmond is an 11th Hour hospice volunteer from Boulder, Colorado.

Many hospices have 11th Hour volunteer programs, although the term they use for these may vary. 11th Hour volunteers typically sit with actively dying patients without available family or friends. Shifts are generally around three hours, and the intention is to provide a loving presence for the dying person. Volunteers sometimes just sit, but they may also play music, read a poem, stroke the patient’s forehead, or offer reassurance that everything will be all right.

Love in the 11th HourJessica Richmond, hospice volunteer, shares the power of a loving presence at death.

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Sharp, stabbing pain radiating from the base of my skull down to my left shoulder blade forced me to acknowledge that this was not just a little “crick-in-the-neck.” I needed a massage. The patient history form at the wellness center was even more detailed than the ones at University Hospital. As the therapist—a woman with big hands and just enough lines in her face to give me confidence—looked over the check marks on my patient history form, she said, “Well, you’re certainly healthy!”

“Yeah,” I responded, watching her eyes settle on the one “Yes” in my list of “No”s for things I had been diagnosed or treated for. “Except for that little ‘cancer’ thing.” She made sympathetic noises, asked me what kind, when it was, and how I was doing. There’s something about a cancer diagnosis that seems to give people liberty to be intrusive almost as much as a pregnant belly does. But there was a slightly different tenor to her questions—something that seemed to betray a greater understanding.

“Are you ever afraid?” Deirdre asked. This is a question that probably many people have, but in my experience, only those in the Cancer Club dare to ask it.

“Well, not so much lately,” I replied. “My cancer was caught very early, I had excellent treatment, and so far I’m NED.” I threw in the abbreviation of “no evidence of disease” to see if she would get it. She did. “But I do recall being pretty scared the first few weeks, before I knew my prognosis or the treatment plan.”

She nodded. “So—Life Quality Institute,” she asked, referring to my place of employment and returning to more pedestrian ground. “What is that?”

“It’s a nonprofit that provides education to professionals and the public on palliative care.” I took a breath, anticipating some version of the typical response. Instead, she burst into tears.

I was used to hearing “What’s that?” or “I’ve never heard of palliative care,” or even a moment’s pause and then a change of subject. This is understandable. A public opinion survey conducted in 2011 by the Center to Advance Palliative Care (CAPC) found that 70 percent of respondents were “not at all knowledgeable” about palliative care, only 5 percent were “very knowledgeable,” the rest were either fuzzy or didn’t even know how knowledgeable they were. However, when palliative care was described to the participants in the survey, 63 percent said they would be “very likely” and another 29 percent said they would be “somewhat likely” to consider using palliative care if they or a loved one had a serious illness.

These survey results speak to the great opportunity for palliative care education. There is a lot of work to do, but people will be receptive to the message! The disparity of definitions used for palliative care is one of the challenges. The CAPC survey tested a couple of definitions specifically designed for consumer audiences. The first was written in technical terms and included phrases like “medical specialty,” “pain and symptom management,” and “coordinated care,” all of which are recognizable key (you might even say code) words for professionals in any sector of health care. This definition won a lukewarm rating of 63 percent from the

survey respondents. Another definition, crafted on the basis of pre-survey focus groups, received a 74 percent rating:

Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to

improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness and can be provided together with curative treatment.

That’s a mouthful—hardly the nifty “elevator speech” needed to put across a vision and purpose in 10 seconds or less. The best quickie definition I’ve come up with so far is simply: Palliative care focuses on relief of suffering in serious illness, not only for the patient but also the family, and can be combined with treatments intended to cure the disease. Even that needs at least two floors, but it’s enough to get the basic point across and often stimulates questions if the person is really interested or if we’re riding to the top of the Sears Tower.

“I’m sorry,” said Deirdre, pulling herself together, “but my husband was diagnosed with lung cancer about a month ago. It’s already spread to his lymph nodes, liver, and brain. His doctors said its incurable, but they’re saying he should do chemotherapy and radiation. They also recommended palliative care. I’d never heard of it before. It sounded a lot like hospice, but Rick isn’t dying! What the heck is that all about?”

By Jennifer Ballentine, MA

To Cure Sometimes,

Reflections on Palliative CareRelieve Often,Comfort Always

The disparity of definitions used for palliative care is one of the challenges.


As my own work in hospice and palliative care has deepened, I still find myself occasionally asking: What the heck is this all about? I offer this reflection on the past, present, and future of palliative care, with no claim at comprehensive knowledge or special insight but with some hope at informing and stimulating the ongoing discussion. (Translation: I’m likely to make a few mistakes and might make somebody mad.)

PastThe first time I heard the phrase “palliative care” was in program 2 of Bill Moyers’ landmark PBS series, “On Our Own Terms,” which aired in the fall of 2000. Many of the topics explored in the program—hospice, caregiving, bereavement, the “dark side” of medical technology resulting in “hard” deaths, even physician-assisted suicide—were not unfamiliar to many of the series’ viewers. But “palliative care” was likely brand-new.

As articulated by their founders, palliative care and hospice both sprang from the recognition that modern medical advances often create as much suffering as they relieve; that when cure is not possible, relief must be attempted and care never abandoned; and that patients are people with rich contexts and complex concerns, not just a constellation of organs and pathologies. Both hospice and palliative care focus on the relief of suffering of all kinds, and treat the patient and the family with equal intensity.

Hospice, however, was from the outset very focused on care of persons with terminal illnesses likely within months of death. In the United States, the hospice movement was launched in the early 1970s as a consciously extra-institutional alternative to hospital-based approaches. The early hospices

were all-volunteer programs, and care for patients in their homes was and continues to be a hallmark. These early features of the hospice approach were formally enshrined in the Medicare Hospice Benefit in 1983. By providing a robust reimbursement source and federal imprimatur, the Medicare benefit significantly fueled and professionalized the hospice movement in the United States. In 2010 more than 5,000 hospice programs cared for 1.58 million patients.

Palliative care was in its infancy in the United States at the time of the PBS series. Pioneered in Canada (also in the 1970s), it was initiated by Dr. Balfour Mount, inspired by Elisabeth Kubler-Ross and Dame Cicely Saunders of St. Christopher’s Hospice in London. But Dr. Mount wanted to address the suffering of patients in the hospital who were not yet terminal, but were no less in need of relief and support. Early palliative care programs in the United States emerged in the late 1980s at the Cleveland Clinic and the Medical College of Wisconsin, expanding to other major hospital settings such as Mount Sinai Medical Center, Duke University, George Washington University, City of Hope Medical Center, and the University of Colorado, among others. By 2011, 63 percent of hospitals reported having a palliative care team or services, representing a 138 percent increase over 10 years.

PresentPalliative care is still predominantly a hospital-based approach, offering relief for patients and support for families alongside life-prolonging or disease-focused

therapies. As those involved in hospice deliberately stepped outside healthcare facilities and the medical model, palliative care was developed to operate within hospitals to expand medical interventions beyond the treatment of disease processes in an effort to care for the whole person.

Palliative care is most often introduced during a consultation by an interdisciplinary team (typically physician, nurse, social worker, and

sometimes others). Team members help patients identify their personal goals for care and match treatments to those goals, while working to minimize pain and distressing symptoms. Some hospitals have dedicated palliative care

beds or some form of outpatient follow-up. Some independent practitioners (MDs or nurse practitioners) offer services on an outpatient basis. A number of hospice programs have developed palliative care services to provide support to patients and families without requiring a terminal diagnosis or six-month prognosis. Some integrated health systems, such as Centura, have included palliative care along with their hospital, nursing facility, and hospice care offerings.

At this writing, there is not a Medicare palliative care benefit, and most private insurers do not specifically reimburse palliative care services. As a result, palliative care services are not sustainable from a financial point of view in any setting. That said, considerable recent research has demonstrated that palliative care services often result in lower costs and higher quality care. These lower cost/higher quality data are sufficiently compelling that several major insurers— notably Kaiser and Aetna—have established palliative care benefit programs.

But Rick isn’t dying! What the heck is that all about?

32 | SPRING 2012 |

It should be noted that there are very few standards and no regulations guiding palliative care. This is changing, but the extent and design of palliative care services are likely to be very different from setting to setting, or even from hospital to hospital.

There are times when palliative care and hospice care seem like a pair of rivalrous siblings—at turns affectionate and wary, supportive and contentious. Their parents are the dour downside of modern medical advances and the loving embrace of human caring. Hospice is a bit older, more mature and focused, self-supporting, and wise. However, hospice is also a bit of an aging hippie, constrained by its own counter-cultural definition and threatened by the very establishment structures it sought to revolutionize. Palliative care is a bit more of a geek, who grew up on campus rather than in a commune. Palliative care is the scholarship kid trying to prove its worth in the academy and institutions of care—waiting impatiently for the time when it will inevitably come into its own. Hospice is suspicious of palliative care’s apparent entrenchment in the medical model and facility settings, as well of the episodic nature of the typical palliative care consultation. Palliative care resists hospice’s end-of-life, last resort image, insisting instead that attention to pain and symptoms, psycho-social-spiritual suffering, and goals of care should and must be part of the approach to any serious illness.

Both are suffering from a bit of an identity crisis. Hospice is currently struggling to survive the ever-tightening constraints of the Medicare hospice benefit reimbursement schemes, as well as the entrenched idea that “hospice is where you go to die.” This notion is reinforced daily by late referrals, patient misconceptions, and a median length of stay of less than three weeks. This means that the majority of hospice patients are at the “brink of death,” requiring much more intense pain and symptom management and little time for holistic interventions with the patient or family. As a result, many hospices are branching out or expanding their

service lines to include upstream non-hospice palliative care, home health care, skilled nursing, and general caregiving services, diluting (some would say) their original mission and purpose, and forcing the field into competitive business models antithetical to its origins.

Palliative care’s identity crisis is equally philosophical but less driven by economic and business concerns. The rift in palliative care concerns whether the practice is a specialty, requiring specific intensive training, board certification, and fellowship preparation or a philosophical approach to care that can be infused into any discipline, setting, population, or pathology focus. The specialists won—to a certain extent—with the establishment in 2006 of palliative care as an official medical subspecialty. Physicians wishing to practice palliative care, per se, must be board certified and, starting in 2013, complete a fellowship. There are also special certifications for nurses, nurses’ aides, and social workers.

The specialists have long argued that this is necessary for legitimating the field in a society that values—even demands—focused expertise. The generalists counter that this is creating just another healthcare silo that will raise barriers for qualified practitioners coming into the system, restrict access to services, and risk tarring palliative care with the same “brink of death” brush as hospice. The generalists insist that the foundational principles and approaches of palliative care should be foundational principles and routine practices across the board, beginning in primary care, touching every acute care specialty and setting, and intensifying in long-term post-acute care.

These approaches are not necessarily either/or; in fact, if both are vigorously pursued, patient care has the best chance of improving overall. It’s an uphill battle involving education and training of upcoming and currently practicing healthcare professionals, overcoming resistance to any approach not focused

on cure, educating the public about the option so they know what to ask for, and constructing alternative approaches to the way medical care is both valued and paid for. Also, as Ira Byock has noted in his new book The Best Care Possible (see review on page 22), changes are needed

in the wider social and political environments surrounding healthcare. Visionaries such as Dr. Byock and Dr. Diane Meier, director of CAPC, have identified specific directions for palliative

care to achieve its potential in the future.

FutureAccording to Drs. Byock and Meier and others, palliative care is at a decisive moment. Healthcare delivery systems in the United States and their impact on our health as individuals and as a nation are also at a decisive moment. The evidence is mounting that palliative care may well be what saves healthcare in the United States. Research has consistently shown that palliative care not only improves the quality of care, but also reduces cost for facilities, payers, and patients. Furthermore, the old-formula tradeoff—that is, quality of life vs. quantity—has taken a hit from studies showing that for a number of end-stage diseases, palliative care actually extends life, in addition to making it so much better.

In a presentation at a recent conference of the American Academy of Hospice and Palliative Medicine, Dr. Meier set ambitious goals for 2020:

1.All patients and families will know to request palliative care in the setting of serious illness.

2.All healthcare professionals will have the knowledge and skills to provide palliative care.

3.All healthcare systems will be able to support and deliver high-quality palliative care.

To achieve these goals, Dr. Meier identified specific efforts that will be necessary, including:

•Undertaking widespread public awareness campaigns via media and social marketing.

Palliative care resists hospice’s end-of-life, last resort image.

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•Building influential partnerships to promote routine access to palliative care in the community, promote standards and regulations, and drive efforts to link payment to quality in healthcare.

•Promoting both specialty-trained practice, with certified doctors and nurses, as well as generalist- level infusion of palliative care principles into nonspecialty areas.

Dr. Byock’s vision is more comprehensive, calling for fundamental social change as well as healthcare practice change, with a view toward achieving a “care-full society.” His call to action includes:

•Emphasizing “secondary prevention” (prevention of complications and crises in people already ill) in primary care and specialty care.

•Shifting attitudes in healthcare from a focus on disease

intervention to promotion of well- being and a view of patients as whole persons living in a rich context.

•Supporting family caregivers through a variety of public programs, web-based communities, and entrepreneurial projects.

•Developing alternative community- based and supportive residential settings for older persons, such as Naturally Occurring Retirement Communities, co-housing, and long-term care alternatives.

•Diffusing political shredding of healthcare issues, particularly those affecting the end of life, by finding common ground and common language (e.g., palliative care practitioners are, Byock says, relentlessly pro-life).

Anyone who has been engaged in the provision of end-of-life care for any

length time will say, “Yeah, easier said than done.” True, but already there are unstoppable trends underway that will directly affect achievement of these goals. The population is aging; by 2030 one in five Americans will be over the age of 65, and many will suffer from chronic conditions over a number of years. Whatever the decision of the US Supreme Court on the 2009 Accountable Care Act, much of that train has already left the station, and reforms have already started to tie quality to payment, manage patient transitions between healthcare settings and back to home, increase the number of elderly and disabled persons being cared for in the community rather than care facilities, and create “medical homes” for better prevention, continuity of care, and disease management. Additionally, major insurers are beginning to recognize the effects of palliative care on systems and individuals as they increase support for “advanced illness services” and improve matching

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34 | SPRING 2012 |

Rev. Olivia Bareham310/968.2763

Los Angeles, CA

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treatments to patient needs. The Centers for Medicare and Medicaid Services are actively seeking and significantly funding innovative approaches, many of which will include a palliative care component.

I couldn’t (and mercifully didn’t) say any of this to Deirdre. What I did say was, “What it’s about is making sure your husband and you get the best possible care, which may include chemo and radiation, but also treatments to relieve pain and any uncomfortable side effects or symptoms, as well as provide emotional support for both of you.”

Three months later, my neck pain flared up again, and I needed a tune-up. Deirdre looked a little worn, but she was smiling. Rick was coming back that evening from a trip to Arizona to visit friends. As she kneaded my sore muscles, she told me about the past few months. Her husband had tolerated his treatments well, and it looked like a lot of his tumors had disappeared or shrunk considerably.

She told me about their wonderful nurse practitioner and social worker. “Gosh, before this I just thought social workers came to take your kids away!” They’d even had some visits with the hospital chaplain. She said, “We’re not religious, but I think it’s helped us wrap our minds around what’s happening. I think I know where we’re headed, and I wish with all my heart it wasn’t true. But even when you can’t cure a disease, you have to keep caring, you know?

I know. Deirdre had unconsciously echoed the credo of holistic healthcare and palliative care: To cure sometimes, to relieve often, to comfort always. I could wish that the 297,621,773 people in this country who’ve never heard of palliative care could know, too. Maybe by 2020, they will.

Web ResourcesCenter to Advance Palliative Care, www.capc.org,offers training to hospitals ramping

up palliative care services, resources and research for anyone interested in palliative care.

GetPalliativeCare.org,CAPC’s consumer-oriented website.

Hospice Analytics, www.hospiceanalytics.com,offers a searchable directory of all hospice programs in the United States, with options to refine searches based on a number of criteria.

Life Quality Institute, www.LifeQualityInstitute.org, offers education for professionals and community members on palliative care and related topics.

National Hospice and Palliative Care Organization, www.nhpco.org,offers education, information, and research on hospice and palliative care.


Waiting for GraceOne brief moment of breath then gone

Just enough for hearts to be entwined for eternity for lives to have sudden, deep meaning profound love then gone

Now his tiny feet lay colorless on the table his fresh, sweet body so bare

So much movement around him but he is still silent

Their cries fill the air stinging enveloping

Reminding us of the exquisite sorrow of impermanence we think we are immune

We wail together in deep primal noises in silence in prayer

There is no place to hide

The pieces of their lives lay at our feet nothing more can be done we wait for grace

Darci Meyers

Beyond the Broken HeartA Journey Through Griefby Julie YarbroughHow does the heart understand grief when it is broken by the death of a loved one? To survive and live forward, those who grieve must find answers. This 8-week support and ministry program is crafted for those who are grieving the loss of a loved one. Julie Yarbrough chronicles her ownexperience combined with a love of Scripture and years of leading grief support groups to create an authentic and deeply personal exploration of the grief journey.

CULTIVATE NEW LIFE FROM A SEASON OF GRIEFA Grief Support Program for Your Church

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Participant BookIncludes stories from the author’s own journey throughgrief, help for navigating grief, Scriptures, and questionsfor personal reflection with space for journaling.9781426744372.

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DVD8 video segments featuring the author and a licensedprofessional counselor. 9781426744396.

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Daily Devotional Book—Beyond the Broken Heart: Daily Devotions for Your Grief JourneyOne year of devotions with daily meditations that include a Scripture,a thought to consider, a prayer, and words of assurance. Includesspace for journaling. 9781426744389.

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“I highly recommend this remarkable grief ministry program to you.”—James W. Moore

Pastor in ResidenceHighland Park United Methodist ChurchDallas, Texas

Julie Yarbrough. Inspired by her personal experience after thedeath of her husband, Dr. Leighton Farrell, senior minister atHighland Park United Methodist Church for many years, Yarbroughestablished a support group for widows and widowers and beganwriting for persons who are grieving. She is president of YarbroughInvestments and lives in Dallas, Texas.

About the author:

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