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Spirituality at end of life: Practitioners remain hesitant

Spirituality

Physicians and nurses at Boston medical centers cited a lack of training as the main reason why they rarely provided spiritual care for their terminally ill cancer patients, even though most patients considered it important to their end of life care.

A new study published in the Journal of Clinical Oncology reports that out of the 204 physicians from four medical centers who participated in the three year study, just 24 percent reported providing spiritual care. Among the 118 nurses, only 31 percent reported providing care.

“I was quite surprised that it was really just lack of training that dominated the reasons why,” senior author Dr. Tracy Balboni, an oncologist at the Dana-Farber Cancer Institute in Boston and researcher of spirituality, told Reuters Health.

Spiritual care may range from prayer with a physician or nurse to recommendations for a hospital chaplain.

Spiritual care “is considered by patients to be an important aspect of end of life care and is also associated with key patient outcomes, including patient quality of life, satisfaction with hospital care, increased hospice use, decreased aggressive medical interventions, and medical costs,” Balboni said.

Even though current palliative care guidelines encourage medical practitioners to mind religious and spiritual needs that arise during a patient’s end of life care, most medical practitioners remain silent. Ninety-four percent of patients with advanced cancer had never received any form of spiritual care from physicians.

Stanford School of Medicine
Stanford School of Medicine

Spiritual care may become more common in the future, however. “There was a time when nurses and physicians may have said, ‘That’s not my job,’ but I think the tides are changing,” said palliative care researcher Betty Ferrell of City of Hope, a cancer research center in Duarte, California.

“I think we are realizing we can no longer ignore this aspect of care,” Ferrell told Reuters. She’s a professor of nursing who was not involved in the new study.

Study researchers suggest more spiritual care training for physicians and nurses. The study found only 13 percent of doctors and nurses reported having such training. However, those who received training were almost 11 times more likely to provide spiritual care to their patients than those who had not.

Learn more from the Life Matters Media Newswire:

Beyond “The Sessions”: Intimacy at end of life

Catholic hospitals: Doctrine trumping patients’ wishes

Is hospice care really best?

Occupational stress: Doctors may suffer when unable to save lives

Physicians who treat the terminally ill may suffer from emotional stress when unable to save patients’ lives. Burnout and compassion fatigue are two serious forms of occupational stress physicians may suffer, according to research by Michael Kearney, M.D.

Kearney, a palliative care physician at Santa Barbara Cottage Hospital in California, describes burnout as “the end stage of stresses between the individual and the work environment.” Compassion fatigue is “secondary post-traumatic stress disorder, or vicarious traumatization — trauma suffered when someone close to you is suffering.”

Health care journalist Jane Brody addresses the stress and anxiety oncologists struggle with in a new article for The New York Times. Brody writes, “A doctor with compassion fatigue may avoid thoughts and feelings associated with a patient’s misery, become irritable and easily angered, and face physical and emotional distress when reminded of work with the dying.” Compassion fatigue may lead to burnout.

Up to 60 percent of practicing physicians report symptoms of burnout.

According to Brody: “Patients and families may not realize it, but doctors who care for people with incurable illness, and especially the terminally ill, often suffer with their patients. Unable to cope with their own feelings of frustration, failure and helplessness, doctors may react with anger, abruptness and avoidance.”

Physician suicide linked to occupational stress

According to Crystal Phend, senior staff writer for MedPage Today, ”Suicide among physicians appears to follow a different profile than in the general population, with a greater role played by job stress and mental health problems.”

Phend cites a study by Katherine J. Gold, M.D., of the University of Michigan in Ann Arbor, who found that problems with work were three times more likely to have contributed to a physician’s suicide than a nonphysician’s. Mental illness was also 34 percent more common before a suicide among physicians.

Up to 60 percent of practicing physicians report symptoms of burnout

“The results of this study paint a picture of the typical physician suicide victim that is substantially different from that of the nonphysician suicide victim in several important ways,” Gold wrote for General Hospital Psychiatry. ”Inadequate treatment and increased problems related to job stress may be potentially modifiable risk factors to reduce suicidal death among physicians.”

Although physicians have more access to health care, they may be reluctant to seek help. ”I think stigma about mental health is a huge part of the story. There is a belief that physicians should be able to avoid depression or just ‘get over it’ by themselves,” Gold wrote.

More than 200 of the 31,636 suicide victims reported in the National Violent Death Reporting System from 2003 to 2008 were physicians.

Meditation may help physicians

A 2008 study published by the Journal of Palliative Medicine, in which researchers studied 18 oncologists, found that physicians who viewed their work with patients as both biomedical and psychosocial found end of life more satisfying than those with a more biomedical perspective.

“Physicians, who viewed their physician role as encompassing both biomedical and psychosocial aspects of care, reported a clear method of communication about end of life care, and an ability to positively influence patient and family coping with and acceptance of the dying process,” the researchers concluded.

“In contrast, participants who described primarily a biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease, and an absence of collegial support.”

Kearney recommends “mindfulness meditation,” a Buddhist-influenced practice for physicians suffering from stress. “The doctor is able to recognize he’s being stressed, and it prevents him from invoking the survival defense mechanisms of fight (‘Let’s do another course of chemotherapy’), flight (‘There’s nothing more I can do for you — I’ll go get the chaplain’) and freeze (the doctor goes blank and does nothing).” He claims that even 8-10 minutes a day of “mindfulness meditation” can help.

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“The Quality of Life”: The end of life played out on stage

The Den Theatre’s adaptation of Jane Anderson’s play “The Quality of Life” addresses many complex and often unspoken concerns baby boomers face as they begin to consider the end of life. The play focuses on Dinah and Bill (Jennifer Joan Taylor, Stephen Spencer), a devout, evangelical and conservative married couple from Ohio. They visit their freethinking agnostic cousins, Jeannette and Neil, (Liz Zweifler, Ron Wells) after a forest fire destroys their California home.

Dinah and Bill recently lost a young-adult daughter, their only child, to an unspeakable crime, and their own relationship has been strained since. Neil is facing late-stage prostate cancer, and Jeannette is unable to imagine living her life without him.

Neil uses marijuana to dull his cancer pain, a practice Bill judges harshly. When Bill and Dinah learn of Neil’s plans to end his own life in the coming weeks, the couple’s visit to California is complicated even more.

The couples’ ideologies clash as they attempt to work through their different beliefs about religion, medical marijuana, assisted death, morality and mortality- all within feet of the audience. Audiences become so invested in the characters that tears flow, an experience the actors call cathartic.

Wells, Spencer, Zweifler and Taylor

Life Matters Media spoke with the cast about their experiences with the play.

Why is discussing the end of life taboo in America?

Spencer: I think it’s such a cultural thing. I have friends who are more like Neil and Jeannette who’ve had a death in their family. They read through the Tibetan Book of the Dead and chanted and their whole family was around. They made a beauty of death because they saw it as a passing. In America, death is taboo. A play like this opens up the discussion.

Wells: I think it has a lot to do with our Puritanical history, our religion. It seems to me that people elsewhere in the world, particularly in Europe, have a healthier view of life and death. A lot of it gets tied up in our beliefs and everyone wants to live. I think this play, at the heart of it all, is about “how do you say goodbye?”

Taylor: Because it hurts. We don’t like to talk about things that hurt us. I love being in a play that provokes. It’s been a dream come true to be part of a story that’s so important. I’ve met people who’ve lost their children and came to this play. But they left feeling relief, in a cathartic way.

Zweifler: I’ve been nervous about people coming to see it for that reason. But they seem to really like it.

How do you feel about laws such as Question 2, which was just voted down in Massachusetts? It would have allowed physicians to prescribe life-ending drugs to some willing terminally ill patients.

Zweifler: I’m open to it, but when someone gets to decide one’s fate, that’s worrisome. But I like the idea of when it’s your time, you get to decide. But the balancing act is when do you let people go? There are new medical technologies that can keep people alive.

Wells: I have no problems with the issue at all. But I understand how people could fear these types of laws.

Taylor: I was raised Catholic and was raised to believe that suicide is a sin, and that you go to hell if you do it. Some of that is stuck in me. I don’t like the idea of someone being able to end one’s life. I like the idea of comfort at the end of life. I would probably not vote for it, but you shouldn’t have to die in pain. Not when there are good drugs around.

Do you identify with your characters?

Taylor: I’m more like Dinah than I would have ever thought. I think of myself as this liberal person, but I have this little conservative side to myself. I never really thought of it until I played Dinah. I would say things that Dinah would say. I thought I was Jeannette.

Wells: Neil is the most personal role I’ve ever played. Neil is the man I want to be. I see a lot of myself in him.

Zweifler: I definitely have Jeannette characteristics but I’m not as hard on people as Jeannette is.

The Chicago Tribune’s Chris Jones recommends this adaption. “In a second-floor walk-up, you’ll find honest Chicago acting, deep thoughts, honest writing about societal change and compassion for the messiness of all our value systems, let alone the way we want to face our end,” he wrote in his three-star review.

The Chicago Theatre Review’s Rachel Parent has called the play ”a strong note in a beautiful place.”

Tickets are available here.

Learn more from the Life Matters Media Newswire:

Childless baby boomers plan for end of life care

Beyond “The Sessions”: Intimacy at end of life

Childless baby boomers plan for end of life care

Couple by George Hodan

As the nation’s large baby boomer population continues to age, some childless seniors are wondering who will take care of them at the end of life. The Sacramento Bee’s Anita Creamer highlights such individuals in a new feature focusing on the struggles childless seniors face in planning for their future.

Creamer spoke with Karen Spencer, 60, who didn’t marry until she was in her late forties. Like more than 20 percent of her generation’s women, she’s one of the 15 million boomers who never had children.

“I have nieces and nephews who would show up, but I don’t want them to feel like it’s necessary to take care of me,” said Spencer who lives in Granite Bay, California with her 68 year-old husband Mike Twigg. “Either I go into assisted living, or I stay in my home with somebody taking care of me. That would be my intention with the long-term care insurance.”

Although she has some savings and a long-term care insurance policy, she worries about the non-monetary situations that could arise, such as the need for home repairs, hospital advocacy and family visits.

“These are issues that we’ll have to grapple with as a country,” said Lynn Feinberg, an AARP policy expert on caregiving. “When somebody needs long-term care, they typically turn to their children.”

There is an increasing reliance on fewer family members to take care of older relatives. ”The expectation on a nephew to care for his elderly aunt as well as his own parents and children presents a real challenge,” said Feinberg.

In 2000, there were more than 35 million Americans 65 and older. By 2030, there will be 72 million.

Creamer describes this issue as a women’s issue, because two-thirds of the 11 million boomers who’ve already lost their spouses are female. Experts aren’t quite sure what will happen to frail seniors without children on whom to rely.

“Even so, both baby boomers and their elders indulge in a rather startling lack of planning for their care needs in old age,” Creamer writes. A recent Centers for Disease Control study shows that only 37 percent of older adults who aren’t in nursing homes or hospice care – and only 15 percent of all adults – have completed legal proxies to specify who can make decisions on their behalf.

Dr. Larry Weiss, founder of Reno’s Center for Healthy Aging, and Feinberg suggest a “Golden Girls” scenario becoming increasingly popular. Small group of seniors are starting to live together, sharing expenses and caring for one another.

Last year, The New York Times’ Paula Span wrote about childless seniors and their quality of life. She interviewed Dr. Merril Silverstein, a gerontologist at the University of Southern California, who found that people at least 75 years old with trouble walking across a room  weren’t receiving less care than those who were parents. They also didn’t score lower on measures of psychological well-being.

“The popular idea was that without children, you’d be in a whole heap of trouble,” Dr. Silverstein said. “But there’s not a whole lot of empirical evidence showing that.”

Seniors can stay in their homes

Henry Cisneros and Jane Hickie, of the Stanford Center on Longevity, offer some advice on how seniors could stay in their homes if necessary changes happen within them.

American housing design standards have undergone few changes since 1964, Hickie said last month at the Northwestern University Buehler Center on Aging. Home construction then was based on measurements of able-bodied men who were in military service during World War II. “The problem is that these design standards don’t fit a population that is shorter, less flexible, fatter, has less muscle mass and is just not as strong as younger people who were the basis for those standards.”

Contrasting colored lining on steps and furniture, better lighting and guide lights can help seniors continue to live in their own homes.

Spencer likes the idea of staying in her home and being surrounded by friends. Spencer and a life-long friend talk about staying in the same neighborhood and eventually traveling together.

Learn more from the Life Matters Media Newswire:

Beyond “The Sessions”: Intimacy at end of life

End of life care varies across top hospitals

Intimacy and end of life: “The Sessions”

Here’s the plot line: a man with an iron lung hires a sex surrogate to achieve a long-held goal before his death.

“The Sessions,” Ben Lewin’s new film, takes on the taboos surrounding sex and the end of life, and artfully portrays the positives that can spring from when the two converge. The 95-minute movie is based on the true story of Mark O’Brien (John Hawkes), a devout Catholic and California poet whose childhood polio has left him paralyzed from the neck down. Determined to lose his virginity before death, he hires sex surrogate Cheryl Cohen-Greene, (Helen Hunt) who ends up having a profound impact on his last days.

Life Matters Media interviewed Dr. Richard Wagner, a Seattle based clinical sexologist and friend and colleague of Dr. Cheryl Cohen-Greene. Here are his thoughts on the critically acclaimed film and the end of life.

Let’s talk about Dr. Cheryl Cohen-Greene.

She’s one of my dear friends. She’s a sex therapist, as I am, and also a surrogate partner specialist. She helped me write the chapter on sex and intimacy concerns in my book, “The Amateurs Guide to Death and Dying.” She was delighted and pleased with the film. Who wouldn’t want Helen Hunt to play them on screen?

Why do you think the film has been so well received?

Because it’s beginning to stimulate questions about sick, elder, dying and disabled people. How they’re all in need of sex and intimacy in their life. I’m really quite surprised it was made. To have a mainstream movie with big Hollywood stars bringing this therapeutic outreach is absolutely brilliant. The acting is superb. You could easily have had a movie about this subject that was poorly done.

Explain the convergence with sex and end of life.

It’s the big elephant in the room. Just because someone is dying doesn’t mean that they have stopped being human. One thing that humans need and prosper with is intimacy, and sometimes that intimacy involves sexuality. But it’s never talked about, even in disease-based discussions. If you listen to sick, elder and dying people they will tell you what they need. So many people don’t know how to touch somebody who is sick or they touch in a clinical way. Imagine that.

Why is discussing death taboo?

Look at the vocabulary that we use when we talk about end of life. ‘Somebody lost his or her battle against cancer.’ It’s losing. We make the end of life, which is this absolute universal for the human experience, into a win or lose state. Nobody likes to be a loser. It’s not our fault that we’re mortal. If we could talk about it in a less panicky way earlier we could be more successful at the end of life.

Why is death viewed so negatively?

A lot of the emotional pain and psychological pain is associated with second-class citizenship that sick and dying people inherit at the end of their life. That’s where our culture relegates them. It’s totally different when you look at how the beginning of life is celebrated. The end of life is not a celebration, but it could be. Why not?

“The Sessions” is in limited release nationwide. Click here for tickets.

Learn more from the Life Matters Media Newswire.

End of life care varies across top hospitals

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Rethinking health care with patient advocacy

New strategies to facilitate patient care and communication with doctors can allow for better treatment options and cut wasteful spending. The Commonwealth Club of California convened a panel of health care experts to share their knowledge and ideas for advancing patient-oriented care and advocacy.

Among those on the panel was Jennifer Brokaw, M.D., the founder of patient advocacy organization Good Medicine. Brokaw serves her clients by being bedside as an “outsider” in hospitals. Advocates, Brokaw says, try to shepherd clients from the hospital to home while evaluating care from an unbiased perspective.

According to Good Medicine, “[Brokaw] advises clients about medical decision making, coordinates care with both primary doctors and specialists and provides support and advisement to families of patients in the hospital.”

Good Medicine, which is based in San Francisco, has already had much success. According to The New York Times, “Dr. Brokaw and her colleagues have thus far helped about two dozen people explain their goals and preferences, at a cost of $1,500 for each person.”

Patients pay out of pocket for services such as hers, but Brokaw finds such a charge actually benefits consumers. “We don’t answer to anyone other than the person that’s paying us,” says Brokaw. This relationship helps patients trust advocates more than doctors and insurance companies.

“Hospitals for example, are not interested at all in making sure patients don’t come back to the hospital, because they get paid every time they come back in.”

The panel also addressed the need for advance care planning. Brokaw says she would like all Americans to ask, “What is the minimum quality of life you would accept for yourself?” A death in the hospital instead of one in the comfort of home may stem from a lack of planning. Many of the calls Brokaw fields are from children of seniors who want to ensure their parents are making the right decisions.

Wayne Pan, M.D., of Health Access Solutions says he believes hospitals actually encourage repeat visits and treatments without much consideration to patients’ wishes. His firm helps coordinate and streamline care. Pan says, “Hospitals for example, are not interested at all in making sure patients don’t come back to the hospital, because they get paid every time they come back in.”

Talk of misinformation and misunderstanding about the costs of care threaded throughout the panel discussion. These costs are a problem both doctors and patients face. According to Brokaw, “It’s really incredible how little we understand about our health care.” She continues, “Even worse, doctors have no idea how much they spend of our total health care dollars when they order tests.”

Brokaw says that record keeping, made easier with technology, can help remedy this problem. Building flags into the health care system will eventually help control spending through the use of electronic health records, says Brokaw. Doctors will be advised to order less expensive medicines when possible and be more timely with tests, similar to the managed care of the 1980s.

Jay Tenenbaum is the founder of Cancer Commons, a scientific non-profit dedicated to continually refining information about cancer subtypes and treatments. Tenenbaum explained how patients can benefit from the undiscovered research of oncologists. “What Cancer Commons is trying to do is build the knowledge base that everyone needs. To be able to take the 100 thousand papers that are published every year in cancer and the results of the 10 thousand clinical trials and reduce that through web-based collective intelligence.” Cancer Commons aims for every patient’s treatment to be recorded and archived for future patients with similar diagnoses.

The panel remained optimistic. Brokaw believes that in 20 years, the system will be much easier for patients to navigate.

Audio of the event is available at the Commonwealth Club of California.

Learn more about patient advocacy at Good Medicine.

Learn more about planning at The New York Times.

Read also:

How to plan for end-of-life

UW professor on getting right care

Estimating end-of-life care

An articulate discussion about dying

A recent “Sunday Dialogue” in The New York Times centered on the issue of discussing death and dying with parents or loved ones. “The proposal for Medicare to cover end-of-life planning discussions between doctor and patient was eliminated from the Affordable Care Act, but the need for such talks remains compelling,” a letter by Janis Abrahms Spring, a psychologist.

Her succinct letter than goes on to the “sticky” talk many Americans try to avoid. “There are plenty of reasons not to enter such sensitive discussions with elderly patients or parents. We don’t want to upset them. We assume that they would ask for details, if they wanted them. We think they know and understand their options, so we respectfully step back from painful conversations,” wrote Abrahms.

One response came from Martha White of California. “I suspect that a lot of our reluctance to talk about end-of-life planning has more to do with our fear of losing our parents than with their fear of death. Most elderly people have lost loved ones and are quite aware that death is the ultimate reality.”