Amos Bailey

Amos Bailey M.D. took the lead in founding “Balm of Gilead,” the only hospice or comfort care organization in the state of Alabama. Along with Edwina Taylor, a nurse, and other associates, Dr. Bailey primarily serves the working poor of Birmingham and the underinsured. This health care team tries to help terminally ill people to die peacefully, with opportunities to attend to personal and spiritual issues.

These compassionate and creative medical professionals appear in the fourth section of Bill Moyers’ new series “On Our Own Terms.” The first program will be shown starting this month on public television stations across the country. Convinced of the series’ importance, the stations have mounted a major publicity drive and have organized community groups to discuss vital questions raised by the programs.

Dr. Bailey wants to change the culture of dying. His effort is to control the pain of his patients so that they can make good end-of-life choices and also attend to important personal issues. He aims at stabilizing the condition of patients so that, if at all possible, they can go home to die.

As Bill Moyers explains, that’s where most Americans wish to spend their last days. Statistics show, however, that four out or five of us die in hospitals or nursing homes. To change this reality requires reformers to go against many different obstacles, as Dr. Bailey has discovered.

At Balm of Gilead, top priority goes to relief of suffering. That includes four different kinds of suffering: physical, emotional, spiritual, and social. If physical suffering is not controlled, Dr. Bailey emphasizes, then it is impossible for patients to concentrate on anything else. But then, the other kinds of suffering pose challenges, too. As Bill Moyers says, “There are no charts for soul pain.”

Dr. Bailey and his associates like to consider control of pain as a person’s fifth vital sign, the others being blood pressure, body temperature, pulse, and respiration.

The team also is committed to avoiding invasive medical treatment such as oxygen masks that cover the face. And, for these patients, they do not recommend surgery or other drastic means for prolonging life.

These health care providers, instead, spend much of their time talking and listening. As Edwina Taylor says of her patients, “It’s such a powerful thing for them to know that they have someone standing with them, that it’s okay to talk about dying.”

John Reagan, age 85, one of Dr. Bailey’s patients, could not stay at home because he could not handle his own medications. This resulted in his being sent to a nursing home where regulations at first did not allow Dr. Bailey to continue to take care of Mr. Reagan.

Another of his patients, Mrs. James, will have to leave his care if she takes too long to die because Medicare covers only six months. Still another, Portia Boyd, needs to employ a woman to prepare meals but Medicare will not pay for this vital chore. Dr. Joanne Lynn, another pioneer in end-of –life care, is heard to complain, “I can get any patient into the ICU (intensive care unit), but I can’t get a meal delivered on the weekend.”

Another chief obstacle to a shift in priorities does not directly concern insurance coverage. Rather, it is the lack of training of most doctors in pain control and end-of-life issues. Too many of them give their main attention to the illness instead of the person. As Edwina Taylor, a nurse with 29 years’ experience says, “A lot of doctors cannot admit that a patient will die.”

Things are changing, however. One half of Americans who die of cancer now do so with the assistance of a hospice program. This fact suggests that more and more people recognize, among other things, the importance of spiritual issues as one prepares for death.

The Massachusetts Compassionate Care Coalition, a group of 140 people from forty different organizations, aims to improve care of the dying. Founded two years ago, this coalition tries to help people become aware of good end-of-life care and of the decisions that need to be made then.

Carol Wogrin, MCCC’s spokeswoman, says of those involved in this end-of-life care, “People don’t work with the dying just because they need a job; for whatever reason, they feel compelled.”

To judge from the television series, these words aptly describe Dr. Bailey, Ms. Taylor and the other team members at Balm of Gilead in Birmingham.

Richard Griffin

On Our Own Terms

Bill Bartholome, is a pediatrician who has become terminally ill with cancer. Of his discovery that he is going to die, he says, “I experienced a kind of grief that I had never known.” Television cameras follow closely the saga of his decline and approaching death as Bill chooses to forgo curative treatment in favor of relief of pain.

Bill Bartholome is only one among dozens of people the viewer meets in Bill Moyers’ new public television series “A Death of One’s Own.” This four-part series is ready to air on Boston’s Channel 2, starting on Sunday evening, September 10 and running the next three nights from 9:30 to 10:30. (The programs will be repeated in early morning hours on Channel 44.)

With Bill Bartholome and offering him loving support during his ordeal is Pam, his fiancée. At this time, she follows through and marries Bill, much to his amazement. “I could not believe that she would do it,” he exclaims.

Living day by day with the knowledge that his death is approaching, transforms life for Bill. Agonizing as this realization certainly is, it makes him appreciate living as never before. Though he says “I am in contact with the skeleton that I am becoming,” he also witnesses to  the arrival of another springtime as “an incredible miracle.”

It’s not how long you live that makes life valuable, Bill comes to see.  When his death comes, some months after we first meet him, he has arrived at a certain level of peace. “Thanks for letting me care for you,” Pam told him then, knowing that he would no longer be able to argue against this sentiment of hers. At that point she was grieving for him, experiencing what writer and professional undertaker Thomas Lynch says by way of commentary, “Grieving is the tax on loving people – the intimate contract.”

These programs are not always easy to watch. As Moyers himself admits, “It’s not pretty, looking at a dying person.” My own emotions, as I went through preview tapes, ran the gamut from pity for others to fear for myself, with many stops between. Often my eyes watered as I saw what happens to many dying people, especially those who suffer added burdens of poverty and isolation.

It is hard to know whom to admire most. The patients who struggle to preserve dignity amid end-of-life crises certainly stir respect, among many other responses. But so do members of the health care staffs – physicians, nurses, aides, hospice workers, and others – who struggle to relieve pain and help patients die with some degree of peace.

Dying this way is denied to altogether too many Americans. Surveys show that most of us want to die at home. However, the stark reality is that four out of five of us actually die in hospitals or nursing homes. And, even worse, many of us die in pain that could and should be controlled and relieved. One of Bill Moyers’ prime reasons for creating this series is to change the American way of death.

Some of the doctors one meets in this series are trying to do this, while struggling against the force of the medical establishment and national priorities. The pioneering physicians shown here, along with their nurse collaborators and other professionals, display both deep sympathy with patients and their families, and, at the same time, passionate disapproval of the system under which they have to work.

A wonderfully compassionate nurse named Edwina Taylor says of her dying patients, “That’s the greatest gift you can give to a person, is to really listen.” Diane Meier, a physician who started the palliative care unit at Mount Sinai Medical Center in New York City, says of her nine years of medical training, “ I did not have a single lecture in pain management.”

Greg Gramelspacher, a doctor who works with poor people in Indianapolis, says, “I’ve seen too many people die in our intensive care unit in ways that you or I would never want to die.”

And Amos Baily, a youthful-looking, marvelously sympathetic doctor in Birmingham, Alabama, is trying to introduce palliative or comfort care, into the mainstream of medical practice there. “I saw bad things happening,” he comments, and I wanted to fix it.”

The first patient mentioned here, Bill Bartholome, said of one group of his care providers, “Dying without hospice is like having surgery without anesthesia.” As if in commentary, the founder of the Zen Hospice Center in San Francisco, Frank Ostaseski, says of hospice work, “We’ve been doing this with each other for hundreds of years – we’ve just forgotten.”

Bill Moyers thinks the time is ripe for radical change. If we are to improve the chances for a good death, citizens must act now. Moyers hopes that discussion groups all around the country will form to talk about the issues and to plan agendas for change.

This column can provide little more than an introduction a series rich in detail.  More information is available at 800 962-2973. Related material can be found on the web at http://www.pbs.org/wnet/onourownterms/community/index.html.

Richard Griffin 

Moyers Series

“I experienced a kind of grief that I had never known.” This was how Bill Bartholome of Kansas City spoke about discovering that he was going to die from cancer of the esophagus. “The pain was not in the same league as the suffering,” he went on to explain, “but, you move down the road, and it becomes okay.”

This statement comes from the first segment of Bill Moyers’ four-part, six-hour blockbuster television series called “On Our Own Terms.” This series, which carries the subtitle “Moyers on Dying,” will be shown this month on many public television stations across the country.

Boston’s Channel 2 will broadcast it, September 10 through 13, at 9:30 in the evening.  New Hampshire’s Channel 11 will show the first two parts at 9:00 PM on September 16 and the last two on September 23. Both stations have scheduled repeat showings at other times, with Boston’s airing on Channel 44.

For people concerned about end-of-life spiritual issues, as well as the whole range of medical and other subjects connected with death and dying, this series deserves careful watching. Previewing the tapes as I have done enables me to recommend it enthusiastically as a uniquely valuable and moving experience.

It is by no means always easy to watch. Viewers are shown real-life scenes of human suffering and the devastation wrought by disease. At the same time, one also comes close to the beauty of the human spirit, – the courage and devotion of people who undergo the experience of dying and of those who serve them. There were times in the series when I felt tears come to my eyes and when I felt stirred to admiration of my fellow humans.

Bill Bartholme, himself a physician, is among the first persons whose dying is traced in this fine documentary. Though he was himself a full professor in his medical school and attached to its hospital, “his experience as a patient was devastating.” No one among the medical personnel took his pain seriously and, at  a time when he needed attention, he was left to fend for himself on a cot in a hospital corridor.

Vital to his functioning in his last few months of life was the decision of his fiancée, Pam, to marry him. “I could not believe that she would do it,” said Bill. But for Pam it was an expression of a love that could not be damaged by the prospect of Bill’s death but only strengthened.

They decide that, for Bill, treatments aimed at a cure do not make sense. Instead, they instruct their medical team to focus on the relief of pain and on other measures to help him prepare for a good death.

In the meantime, Bill finds that the knowledge of death’s nearness enhances his experience of living. “If you don’t expect to see spring when fall comes and then you are around and get to see spring,” he says, “you don’t experience it as spring. You experience it as a miracle.”

Throughout the running time of six hours, one meets other people who are facing death in the near future. And one gets to know physicians, nurses, and other medical professionals who are trying to change the way in which hospitals and individual caregivers provide services to the dying.

Some of these professionals belong to so-called palliative care teams that make it their business to deal with the pain and discomfort of patients for whom a cure is no longer realistic. I found it inspiring to see such professionals going against the system to defend the rights of their patients to die without undergoing further treatments that cannot help them and may possibly increase their suffering.

Bill Moyers and his collaborators have announced ambitious goals for this series. They want to begin a national conversation about improving the way  Americans die. They hope to spark discussion all across the country about the issues that surround death and dying.

The crucial issues that the series takes on include the following: fear of dying in pain; concern about being a burden on family and loved ones; acute financial stress; fear of dying alone; loss of control and dignity.

A free information packet is available. To get it after the broadcast, you can call 800 962-2973. You can also find material on the web at http://www.pbs.org/wnet/onourownterms/community/index.html

Richard Griffin

Jin Shin Jyutsu

Most therapeutic techniques that are employed to promote relaxation hold little attraction for me. For years, I have failed to profit from controlled breathing, for example, a practice that works for many other people. Even meditation, which I have long practiced within the classic tradition of western spirituality, does little to relieve my anxiety or to soothe bodily stress.

For this reason, I felt somewhat wary in accepting a longstanding invitation from one of my readers, Phyllis Reichart of Watertown, to experience Jin Shin Jyutsu, the therapeutic technique that she practices. This 42-year-old single mother is a certified practitioner of what her brochure describes as an “ancient energy-harmonizing art that can help reduce stress and promote health and well-being.”

Jin Shin Jyutsu traces its origins to ancient times in Japan. However, it fell into obscurity for centuries until rediscovered in the early 1900s by a Japanese master who devoted his life to its development. In the 1950s, it was introduced to the United States by a woman named Mary Burmeister who took the lead in spreading it around this county.

Phyllis Reichart became involved in this therapeutic practice five years ago after having pursued a career as an educator. Her motivation has been to help people to find more peace of soul and body. Older people like me, she believes, can profit from this discipline, especially if they are experiencing symptoms of tension or illness for the first time.

Given my misgivings about such practices, I agreed to take part in this exercise somewhat warily but in the spirit of adventure. Though Jin Shin Jyutsu was entirely new and unknown to me, I trusted that it would do me no harm, and might possibly deliver on some of its promises. It helped greatly that Phyllis Reichart was so patient in answering the questions of this first-time wayfarer.

It is gratifying to report here that the one-hour session introducing me to this Japanese art proved both enjoyable and, as I hoped, relaxing. To my surprise, it also turned out to be subtly and agreeably energizing as well. For the next couple of days I felt my spirits notably higher than usual.

These positive results emerged even though I remain, if not dubious, at least agnostic about the rationale behind the art. This explanation attributes undesirable physical and mental symptoms of stress to “blocked energy flows.” It believes that these blockages can by opened by making contact with certain  pressure points on the surface of the body.

Practitioners begin this exercise by feeling your pulse to determine your current flow of energy and state of well-being. Then, by gently placing their hands on “Safety Energy Locks” located at various bodily sites, therapists can begin to clear out energy blocks and you can start to experience “renewed vitality and harmony.”

As already noted, personal lack of faith in this explanation of bodily dynamics did not prevent me from enjoying the whole experience. From the beginning, when I lay down on the table, after removing only my shoes and wristwatch, I felt the practitioner’s touch as soothing and the procedure agreeable.

The therapist does not do any massage nor manipulation of muscles. Instead she proceeds by merely placing either her fingertips or her whole hand on each the body’s 52 primary locations (26 on each side.)

Phyllis Reichart showed herself gentle and sympathetic throughout as I submitted to this unfamiliar process. At several points, she explained what she was doing in order to allay whatever anxiety I might have felt as a beginner. Restful music played nearby. From an adjoining room I could hear Phyllis’ four-year-old daughter happily playing under the supervision of a caretaker.

Before moving her hand to each new site, Phyllis would try to sense when the vital energy had been successfully harmonized with the previously opened locations. These points on the body, by the way, correspond almost identically to the sites used in acupuncture and other such disciplines.

At the session’s end, Phyllis gave me materials designed to help me carry on the therapy on my own. One is entitled “Harmonizing of Attitudes through Fingers” and indicates “how to get rid of worry fast.” Though I welcome anything that can relieve anxiety quickly, long experience makes me doubt that such a thing is possible.

Later years, I believe, are favorable times for “experimenting with truth.” This phrase of Gandhi first gave me inspiration long ago and continues to do so now.

This Gandhian framework I use in evaluating my brief experience with Jin Shin Jyutsu. It introduced me to a new and different worldview. It opened up a new approach for coping with stress, adding to already familiar methods. It revealed more of the mysterious connections between the spiritual and the physical sides of human existence. And it showed me once again the beauty and power in human touch.

Anyone wishing for more information about this therapy can tap into its web site at www.jinshinjyutsu.com. [link no longer active]

Richard Griffin

Death Wished For

A 92-year-old woman told me last week that she wants to die. This she said in a group of fellow elders to whom I have been speak from time to time about spirituality.

Anna (to call her by a name different from her own) made this announcement with clear conviction. She stated her wish in a firm voice that made us all believe that she meant it. Most of the other group members present nodded sympathetic assent and one or two indicated that they also would welcome death.

At first, I felt taken aback and not quite sure how to respond. Such an announcement carries so much emotional power that it can be disconcerting. So, at first, all I did was listen carefully and make some sympathetic noises. Anna is a person easy to love, such is her quiet sincerity and openness to the experience of other people.

When I did form a response, I told her that I understood how she could feel like that. In telling of her desire for death, she indicated that she had been through enough. Without specifying what troubles she had known, she had hinted at a variety of recent health crises. It is obvious that her hearing has become diminished, and she walks with some difficulty.

I responded further by saying that, even though she would welcome death, it would be difficult for me and for others to suffer her loss. We so value her, I said, that her leaving would be a heavy burden for us to bear. To judge by their body language, others in the group identified with this sentiment.

Anna’s death wish reminded me of the prophet Elijah in the Hebrew Bible. The first book of Kings tells how this prophet, threatened by the evil queen Jezebel, felt that he could go on no further. His travails in carrying out the word spoken to him by the Lord had piled up so much that he could no longer take it.

So he went out into the wilderness, and after a day’s journey sat down under a broom tree. There he asked that he might die: “It is enough; now, O Lord, take away my life, for I am no better than my ancestors.”

The two situations are obviously different – Elijah and my friend Anna  find themselves at diverse stages of life and have different challenges to contend with. It could also be that Elijah has been overcome by depression, a malady that can afflict all of us and one that needs healing.

But both Elijah and Anna feel worn down by the pressures of the world and feel the need for ultimate relief.

“Ich habe genug” (I have had enough) is the way Johann Sebastian Bach puts it at the beginning of a famous cantata known by that title. And it’s a sentiment that almost everyone can feel at times of severe stress. There are moments when it all seems too much.

For old people like Anna, the burden can feel even heavier. And when you add, as she did, the assurance that her life’s work is basically completed, then the desire for death seems even more reasonable. You have to feel deep sympathy for a person who can look back upon ninety years of carrying out life’s tasks and who now experiences more pain than satisfaction.

And yet, for me and many other people, yielding to these feelings must be seen as a temptation rather than an appropriate reason for putting an end to one’s life. We take inspiration from the Elijah story: it does not end with the prophet’s death. Instead, the Lord appeared to him, gave him food and drink, and “he went in the strength of that food forty days and forty nights to Horeb the mount of God.”

One can never predict exactly when the most meaningful moments of one’s life will come. As Kathleen Fischer writes: “We do not know what is our ‘hour,’ the time when events of most significance may occur in our lives. It may in fact be the final years, months, or moments of that life.”

If this approach be trusted and taken, one must consider at least possible that spiritual experiences defining for our lives can take place in extreme old age. Perhaps this confidence is worth hoping and praying for.

Richard Griffin

Pain

All during the week when I prepared to write this column, I was in pain. This pain had no clear reason for visiting me – I was not sick – but it made for a difficult few days. The experience does, however, enable me to speak with more authority about pain than I would like to have.

A Gallup poll taken last summer discovered that nine out of every ten Americans experience pain at least once a month. Fifteen percent of them report the pain to be severe.

The same poll found that more than half of Americans over 65 experience pain daily. And a staggering 88 percent attribute their pain to growing older.

As a result of this assumption, many people do not talk with their doctors about pain. Of those who do, less than half think their doctors fully understand how it makes them feel.

Only a little more than one-third of older people, the survey also found, will even talk with family members and friends about their pain. And two-thirds of Americans in all age groups will see a doctor only when they cannot stand the pain any longer.

These findings apply especially to chronic pain, the kind of pain that continues for a long time. Since more than one-half of people over 65 suffer from some kind of arthritis, this disease is frequently seen as the cause of pain.

Several national organizations, including the American Society on Aging and the Arthritis Foundation, have begun a campaign to help people control their pain better and improve their communication with health care professionals about it. In that effort, these agencies have published a brochure called “Speaking of Pain” that offers “tips to help you talk with your doctor about pain.” (To get this brochure, call 800 283-7800.)

The authors of the brochure advise preparing for visits to your doctor by giving thought to questions about where you feel pain, how often, how strongly, and what makes your pain feel better or worse. These are commonsense issues but many people go to their health clinics without thinking them through.

When actually with your doctor, you are advised to ask questions such as the following: What do you think about the options for relief such as exercise, meditation, and so-called alternative therapies? What side effects should I expect with certain treatments? How can various forms of exercise help me?.

Throughout, you might benefit by taking notes to help you remember the doctor’s advice. I would also suggest bringing along a friend or family member with whom you can listen to the doctor’s advice and then discuss it.

The brochure writers end with what they call “the last word on pain.” To quote their conclusion: “You don’t have to live with pain. Follow the suggestions in this booklet and work with your health care professional to relieve your pain.”

The medical director of the Arthritis Foundation, Jack Klippel, reinforces this point of view for elders: “Pain is not a natural part of growing older,” he says, “and is not simply a fact of life.”

To assess just how realistic this outlook is, I contacted one professional health care provider and two retired women who have experienced serious pain.

Robert Furman, as a staff physician at the New England Rehabilitation Hospital, deals with many people in pain. He too does not believe that pain should be considered a natural part of aging. For him, the important issue is “to determine if it represents a disease process that can be remediated or not.”

Dr. Furman feels grateful that so many resources are now available to help people control pain. At the same time, he says “We live in an overly medicated society and I want to avoid simply adding one more item to their medicine cabinet.”

He also makes a distinction between pain and suffering. Part of his job as a physician is to talk with patients and help them sort out the differences. Even with pain, many people manage to keep their sense of themselves intact and carry on their lives rather well.

Asked how she has coped with pain, Joan Keenan gives a lot of credit to her physician, Peter Gross, at Massachusetts General Hospital. “He is very sympathetic and interested in what I have to say,” she reports. “He gives me his complete attention.”

Joan has found that pain “can take over your life” so “you can’t give in to it and have to keep going.”

This comes close to the attitude of Kathryn McCarthy who thinks “the question is what direction you go in seeking help. You can never stop looking for a solution.”

She notes that more and more hospitals nowadays have established pain units, important resources for patients. For her part, she feels fortunate to have a skilled and sympathetic personal physician who has helped her find remedies for her pain and its attendant problems.

Physicians like those mentioned here, and patients such as the two women interviewed, point the way toward doctor/patient collaboration as a creative response to pain.

Richard Griffin

Lieberman and the Sabbath

Joseph Lieberman, the Democratic Party’s candidate for Vice-President, has announced that he will not campaign on Saturdays. As an Orthodox Jew, he holds the Sabbath to be an altogether special day on which work is not an option.

“My religion is very important to me,” says Senator Lieberman, a sentiment that no one doubts is sincere. Of course, religion has importance for the other major candidates as well and they presumably make Sunday, the Christian Sabbath, a time for worship and some other activities different from the rest of the week.

For Orthodox Jews, many laws and regulations govern the observance of the Sabbath (Shabbat, as most of them refer to it). These rules are intended to safeguard the meaning of that day and to ensure that the tradition behind it not be lost. Keeping to these prescriptions enhances the value of that special time between sundown on Friday till Saturday evening each week.

The celebrated Jewish leader and scholar, Rabbi Abraham Joseph Heschel who taught at the Jewish Theological Seminary in New York, a few decades ago published a beautiful book called The Sabbath: Its Meaning for Modern Man. First appearing in 1951, this work later went through several editions and has since become a classic.

In this short but profound volume, Rabbi Heschel offers insight into the meaning of the Sabbath that brings out its many-sided significance. To read it is to develop a new appreciation of what the day may mean for Senator Lieberman and the millions of other men and women who share his faith. Words from this book quoted here make eloquent material for meditation.

Rabbi Heschel insists that Judaism is a religion oriented largely to time rather than to space. The Sabbath consecrates time and overturns people’s ordinary values. “There is a realm of time,” he writes, “where the goal is not to have but to be, not to own but to give, not to control but to share, not to subdue but to be in accord.”

And again: “Six days a week we wrestle with the world, wringing profit from the earth; on the Sabbath we especially care for the seed of eternity planted in the soul. The world has our hands, but our soul belongs to Someone Else. Six days a week we seek to dominate the world, on the seventh day we try to dominate the self.”

Many people would argue that the value of the Sabbath lies in its giving us a break so that we can return to the week’s work with renewed energy. But Rabbi Heschel rejects this approach. Standing this argument on its head, he insists “The Sabbath is not for the sake of the weekdays; the weekdays are for the sake of the Sabbath.”

Ultimately, the rabbi finds the worth of this special day, not in anything merely human, but rather in what it tells us about God. “The likeness of God can be found in time, which is eternity in disguise,” says this deep thinker. By focusing attention on time rather than space, the Sabbath reminds believers that God is not a thing. Because it is spiritual, this special time suggests that no definition can grasp God, that the divine eludes human grasp.

So a theology lies behind the Sabbath, a doctrine that begins with the Bible’s story of the creation of the world. After having made the world and all that is in it during the first six days, God put the finishing touches on the final day by taking three actions: God rested, he blessed, and he hallowed, says Rabbi Heschel. That means that the Sabbath is a time for abstaining from work, it is a day that has received the divine blessing, and it is a day filled with holiness.

I asked one of my readers, Phyllis Reichart, a 42-year-old single mother, what Shabbat means to her. Her answer seems in beautiful harmony with Rabbi Heschel’s views and, for all we know, with Joseph Lieberman’s as well.

“I think that we need to have time to stop and listen inside,” she answers. “I hear my connection with God, I get a sense of direction in my life’s task, and clarity in my relationships with myself, with my loved ones, and in my work. I remember (a lot of it’s about remembering) to feel from the deepest part of myself.”

Richard Griffin