Tagged: Palliative Care

Pain should not be a symptom of aging, says Rainbow Hospice Medical Director

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Pain in the absence of disease is not a normal symptom of aging, but is still a daily experience for many older adults, said Dr. Timothy McCurry, medical director of Rainbow Hospice and Palliative Care, at the 15th Annual Aging Well Conference in Evanston, IL.

“As we get older we get more diseases, so we have come to associate aging with pain,” McCurry told a room of seniors gathered at the Three Crowns Park retirement community. “Chronic pain is constant in a lot of people. The data shows 100 million people in the U.S. with such pain.” He suspects arthritis is the most common chronic disease.

Because chronic pain is episodic, clinicians should mind how patients’ pain changes throughout a week and over time. For example, patients suffering from arthritis can exercise to help reduce symptoms. McCurry recommends aerobic and strength regimens. “When you become weak, your muscles become vulnerable to injury- falling and breaking a hip.”

But exercise only does so much, as medication usually accompanies chronic pain. “Sometimes you have to make changes and take medications that are a little stronger, a little strange, but help you be able to do stuff,” said McCurry. He knows many choose not to take medications, and they subsequently become “used to pain.” These seniors have a higher risk of falling and a lesser quality of life.

Sometimes, those suffering from chronic pain hide their pain from clinicians, family and friends. Over time, these patients learn how to better mask their discomfort, unlike patients suffering from sudden and intense acute pain.

“We can help people in severe pain,” said McCurry, noting morphine and other opiodic drugs common throughout hospice. “No chronic patient should be in pain.” But some patients shy away from these treatments out of fear of addiction or social judgements. “Although these pain medications can help you function, these myths are very strong and very scary. But at the same time, the alternative is worse.”

Even though hospice care helps many manage pain, findings show most seniors utilize such care too late.

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Montana HB505: Outlawing assisted suicide

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Image: Flickr, Alex Proimos

Montana lawmakers are considering a controversial bill to outlaw physician-assisted suicide, a decision that opponents say would punish doctors for honoring their dying patients’ wishes. If the bill passes, physicians who provide life-ending drugs could face 10 years in prison and a $50,000 fine.

Introduced by Rep. Krayton Kerns, a Republican, HB505 seeks to clarify “the offense of assisting in suicide,” after a 2009 Montana Supreme Court decision left many confused about the issue.

Known as the Baxter Decision, the court ruled physicians that prescribe life-ending drugs are safe from prosecution, because “nothing in Montana Supreme Court precedent or Montana statutes [indicates] that physician aid in dying is against public policy.” However, the decision did not address whether assisted suicide is a right guaranteed under the state Constitution.

Kerns insists the ruling needs clarification. ”The Baxter Decision did not establish legal assisted suicide in Montana, and this has remained a gray area,” Kerns told the Great Falls Tribune. ”This bill would be a legislative declaration saying it is illegal based on constitution principles.”

According to the bill, “A person who purposely aids or solicits another person to commit suicide, including physician-assisted suicide, commits the offense of aiding or soliciting suicide.” Consent of the patient would not be a defense. However, withholding life-sustaining treatments from terminally ill patients would remain legal.

Critics argue the bill would curtail patients’ end of life choices. Opponent Bonnie Warne of Billings told the Billings Gazette that doctors who provide life-ending drugs to their patients would be unfairly attacked. “Death is inevitable and private. We do not need the state interfering with aid in dying,” she said.

Dan Lourie, from Bozeman, wrote a letter to the Montana Standard arguing that if the bill passes, he would be forced to forfeit his doctor-patient privacy. “My position is that my end-of life choices should be between me and my doctor, and the Montana Supreme Court agrees with me,” he wrote. “It should be my right, and certainly will be my desire, to discuss all of my choices with my doctor — treatment options, my choice to refuse treatment, pursuit of comfort care and assistance in dying.”

Compassion and Choices, a non-profit that serves to expand end of life options, maintains the bill would “roll-back” end of life legislation.

“HB505 goes beyond just prohibiting aid in dying by putting a physician at risk of prosecution for answering a patient’s questions about any of a variety of death hastening options, such as directing deactivation of a cardiac device, directing withdrawal of a ventilator or feeding tube, or provision of palliative sedation; and a spouse, child or friend could be prosecuted for driving the patient to the doctor’s office for the discussion,” a statement posted on their Web site read.

If the bill were to pass, palliative care would still be allowed for terminally ill patients, because palliative care serves to manage pain and ease suffering.

Hearings about the bill began this week.

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Dying at home may be more difficult than expected

Extensive planning is necessary for those determined to help their loved ones die peacefully at home, health care reporter Susan Seliger writes for The New York Times’ blog on aging. Most Americans say they want to die say “at home” when asked,  but both the patient and caregiver’s well being must be considered.

Investing in the right equipment and preparing documents may overwhelm some caregivers, and although professional help is available, each patient’s circumstances are different.  Seliger has prepared a list of 12 tips to help them fulfill their final wishes.

Perhaps the most important consideration is making room for the bed. “A lot of people put the patient in a family room where there is more space, or the dining room if it’s closer to a bathroom,” said Dr. Stacie K. Levine, a geriatrician and palliative care physician at the University of Chicago. She also recommends putting the bed on the first floor of the home to prevent strenuous movements.

The pros and cons of using a hospital bed, Seliger says, should be carefully considered due to the emotional impact that sleeping apart from a spouse can bring. She advises patients with dementia or  cancer who are not that mobile to choose a bed with an air compression mattress in order to to prevent bedsores.

Other suggestions are simple comfort adjustments, such as cushioning the patient’s favorite chair or buying earphones for the hearing impaired. Spring pressure adjustable curtains provide privacy.

Caregivers may also make use of hospice during the last stages of care. “A good hospice team not only helps the caregiver figure out a plan for care but arranges for Medicare approval and payment,” Seliger writes.

“The larger the hospice, usually the more services for the patient and caregiver,” said Dr. R. Sean Morrison, director of the National Palliative Care Research Center at the Mount Sinai School of Medicine. ”Ask for their daily patient census – several hundred patients per day is a good size.”

“What I see that prevents people from being able to stay at home [to die] is not their medical needs but the needs of their caregiver — can the caregiver really help, are there resources to help, or is that person going to be overwhelmed?” Morrison told Seliger.

“Respite care” for the caregiver may help with overwhelming stress. Respite care pays for up to five days of patient care in a nearby medical facility so the caregiver can take a break or even go on a vacation, said Lori Mulligan, senior director of development marketing and community services at Gilchrist Hospice.

Still, hospice care remains underutilized. As LMM previously reported, 36 percent of hospice patients die or are discharged within seven days of treatment.  Many others suffer more than they need to due to hospice enrollment policies. Hospice is most often used when curative treatment is no longer effective, and a terminal patient is expected to live about six months or less.

Despite the work, home deaths may be less traumatic than hospital deaths, according to a 2010 study published in the Journal of Clinical Oncology. Some 300 adults with terminal cancer and the same number of caregivers were studied. Among the caregivers, those whose loved ones did not die at home were about five times more likely to have post-traumatic stress disorder after six months than those whose loved ones died at home.

Learn more about dying at home from WebMD.

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Hospice enrollment policies contribute to underuse of care

Hospice enrollment policies contribute to the underuse of hospice care in the U.S., according to new findings published in the journal Health Affairs. Findings from the first national survey on hospice enrollment policies found 78 percent had at least one policy restricting care access for high-cost patients.

Although almost all Americans live within close proximity to a hospice, more than half of patients eligible for the care die without it. There are more than 3,500 hospice providers in the U.S.

Some 600 hospices were studied, and according to researchers, “patients with potentially high-cost medical care needs, such as chemotherapy or total parenteral nutrition,” had a greater likelihood of facing the restrictions. Limited enrollment policies were identified in both for-profit and nonprofit hospices. These restrictive policies include not receiving chemotherapy, total parenteral nutrition, blood transfusions, an intrathecal catheter, radiation therapy, tube feedings or requiring a primary caregiver at home.

“It represents a barrier to people who want hospice care but can’t receive it,” said lead author Melissa Aldridge Carlson, a palliative care researcher at the Mount Sinai School of Medicine.

The aim of hospice care is to manage the pain and symptoms of the terminally ill so that their last days are spent with dignity. The care is not intended to treat the disease.  Hospice is most often used when curative treatment is no longer effective, and a terminal patient is expected to live about six months or less. Medicare states that to elect the Medicare hospice benefit, an individual “waives the right to receive all other Medicare covered services for the terminal illness and related conditions.”

Hospices may restrict access because of current Medicare reimbursements, which account for more than 80 percent of hospice revenue. The reimbursements do not cover treatments related to a patient’s terminal illness, so a hospice must pay for it. As Carlson points out, the average per diem reimbursement is only $140 per day.

The researchers explain, “many patients with terminal illnesses can benefit from using oral chemotherapy for palliative rather than curative purposes; radiation; or blood transfusions for treatment- or disease-related low blood cell counts.” Any one of these treatments can cost more than $10,000 a month.

Open access policies allow enrollment of those who are not yet eligible for the Medicare hospice benefit, anticipating that they will remain with the hospice when they do become eligible. Patients receive the medical comfort and social support available through hospice while simultaneously retaining access to medical treatments for their disease.  Such patients may be covered by private insurance plans or pay for the care out of pocket.  However, initial reports indicate that the cost of caring for patients enrolled through open access policies is generally absorbed by the hospice provider.

The authors conclude that increasing the hospice per diem rate for patients who require complex palliative treatments and removing the Medicare hospice benefit limitation on concurrent care may enable more hospices to expand their enrollment to patients who need and want it.  Providing hospice services in a cost effective manner for those whose treatment plans include concurrent life-extending and palliative care is the subject of the a pilot project funded by section 3131 of the Affordable Care Act, although results for this pilot project are years from completion.

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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.

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Obesity and end of life: Weight affects care

As the U.S. continues to campaign against what some call “the obesity epidemic,” research shows that weight may affect the quality and costs of end of life care. By 2030, at least 60 percent of Americans in 13 states will be obese, according to the Centers for Disease Control.

Obesity’s effect on economics and health care

The CDC recently gave the nation an “F” for its obesity epidemic. More than 35 percent of adults and some 17 percent of children age 2 to 19 are obese.

Dr. Dean Griffin, Surgery Professor at LSU Health Shreveport, said as those numbers rise, costs of care rise and quality of care diminishes. “The cost goes up dramatically because these patients tend to stay in the hospital longer and because they have more complications, there are additional costs,” he told Louisiana’s KTBS. ”Surgery is much more difficult in patients who are overweight, that makes it very difficult, for example, to gain exposure.”

CDC
CDC

The CDC analysis found combined medical costs associated with treating preventable obesity-related diseases will increase between $48 billion and $66 billion per year in the U.S. by 2030. The loss in economic productivity could be as much as $580 billion annually by 2030.

Obese struggle with transitions from hospitals

Hospital case managers, nursing home and home care agency directors report patient size impacts transitions from hospital settings, according to a study by East Carolina University’s College of Nursing. This study is one of the few done on the issue.

“The increase in obese patients within the hospitalized patient population has become a challenge for nurses. Providing care for obese patients necessitates the use of assistive equipment and requires more staff members and more time for nursing procedures,” researchers explain.

Even home care is sometimes deemed inadequate for an obese patient due to lack of caregiver support or inappropriate facilities. Nursing home placement is often difficult for the obese due to the inability or unwillingness of some facilities to accommodate them. Patients can become “stranded in the hospital,” the report states, and “experience subsequent deterioration of vigor as well as increase in cost.”

Similarly, a recent study published in the Journal of Palliative Medicine determined obesity creates significant challenges to palliative medicine, leading to premature death and poor quality of life. U.K. researchers found privacy, handling and transfer to hospice more difficult for the obese.

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How POLST forms clarify wishes: Three scenarios

How POLST forms clarify wishes: Three scenarios

The Physician Orders for Life-Sustaining Treatment (POLST) program, designed to improve end of life care in Illinois, is on its way to implementation. Health care professionals met at Rush University Medical Center this week to discuss the form’s development and strategies for raising public awareness.

Julie Goldstein, M.D., a clinical ethicist and palliative care physician at Advocate Illinois Masonic Medical Center, provided the audience with hypothetical scenarios the POLST program form could remedy.

POLST program forms are more detailed than conventional living wills or other advance directives. They allow people to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for people who are likely in their last year of life.  They can follow patients across in-state care settings and direct doctors to provide or withhold life-sustaining treatment in emergency situations.

The forms aim to more quickly direct doctors to a person’s wishes and eliminate confusion about what patients would want in the case that they are medically incapacitated and unable to communicate their wishes.  The forms provide instructions in the case of a cardiopulmonary arrest (the person has no pulse and is not breathing), the degree of medical intervention they would want in a pre-arrest situation (the person has a pulse and/or is breathing), and whether or not they would want artificial nutrition if their medical illness prevented them from taking in adequate oral nutrition.

How a POLST form could help

A 67-year-old man is sent to the emergency room with chest pain and shortness of breath. He is also confused. The cardiologist says that a cardiac catheterization with angiogram and a stent are needed. The nurse tells the physician that there is a DNR order on his chart. Should the physician send the patient for an angiogram? It’s not clear. 

If that patient had a POLST form that indicates DNR in case of full cardiac arrest but an order for full treatment in a pre-arrest emergency, the physician would immediately know what to do. The patient would be sent for the angiogram.

An 85-year-old man is admitted to the emergency room with severe pneumonia. He’s hypoxic, confused and refusing the ventilator. There is a DNR order on the charts. The physician feels that DNR doesn’t apply to this potentially reversible condition but the nurses disagree. He receives full resuscitation. 

If that same patient had a POLST form indicating no CPR in the case of arrest and a preference for comfort care, the physician and nurses would have clear instructions.  He would not have undergone full resuscitation, but would have been maintained in comfort with noninvasive maneuvers.  .

A 59-year-old woman who is being treated for breast cancer is admitted to the emergency room for sepsis. She is transferred to intensive care and receives oxygen and maximum vasopressors. She has a DNR order on the charts. The staff are concerned that they are violating her wishes.

If she had a POLST form indicating no CPR in the case of arrest but limited interventions in addition to comfort measures, the staff may feel more comfortable treating her as they are doing and spend less time deliberating.

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POLST Illinois moves forward

The Physician Orders for Life-Sustaining Treatment (POLST) program, designed to improve the quality of end of life care, is on its way to Illinois. Health care professionals met at Rush University Medical Center Thursday to discuss the form’s development and strategies for raising public awareness.

Sample POLST

The Chicago End-of-Life Care Coalition sponsored the discussion led by Julie Goldstein, M.D., a clinical ethicist and palliative care physician at Advocate Illinois Masonic Medical Center.

POLST program forms are more detailed than conventional living wills or other advance directives. They allow patients to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for patients in their last year of life, and they can follow patients across in-state care settings and direct doctors to provide or withhold life saving treatment in emergency situations.

For instance, an individual may choose to decline resuscitation efforts, but of for artificial nutrition. An individual may choose artificial nutrition with set limits or permanent placement.

Goldstein answering audience questions

“POLST improves on the existing uniform DNR form,” said Goldstein. “POLSTs are medical orders and have to be followed by all medical care providers.” To be valid, a POLST form must be signed by an attending physician.

Loretta Downs, president of the CECC, told LMM that POLST is essentially about enhancing personal liberty at end of life. “For Illinois, accepting the POLST form is a statement encouraging people to take advantage of their liberty regarding end of life decisions. It empowers the individual to make a clear statement about whether or not he or she wants end of life care and what level of treatments.”

The POLST form will be available in early 2013, a version of the IDPH DNR Uniform Advance Directive. Goldstein said it will be most similar to the California POLST. The final form awaits approval from state health officials and it may be “ultra pink.”

Many in attendance left hopeful that the form would help their patients. Kriston Kurelic, a social worker at Passages Hospice, says she is excited about the form’s implementation. “I’m very interested in the changes that will happen,” Kurelic said. “It will be very beneficial to long-term care. It will be beneficial to patients and families.”

Christine Nelson, director of nursing at Manor Care, agrees. “I think anything that helps us assess what people’s wishes are more clearly is helpful,” she said. “The only barrier I see is time being taken to explain the form to patients.”

The task of educating patients will likely fall on individual health care providers. Because it is a physician order, it is intended to be accompanied by a meaningful doctor-patient dialogue. Carol Blendowski, a Rainbow Hospice nurse practitioner, says time is what is required to have such conversations, but thinks patients will ultimately find the POLST easy to navigate. “I can see clearly now,” she said. “This form is user friendly.”

POLST was developed in Oregon in the 1990s, and now 15 states have POLST programs. Twenty-eight states are considering the use of POLST forms.

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What is palliative, hospice care?

POLSTs work, says Respecting Choices’ Bernard Hammes

What is palliative, hospice care?

Despite its growing popularity in hospitals, most Americans remain unaware of the comfort and benefits palliative care can provide some terminally ill patients.

“There is a clear need to inform consumers about palliative care and provide consumers with a definition of palliative care,” researchers commissioned by the Center to Advance Palliative Care advise. According to Public Opinion Research on Palliative Care, seventy percent of the general population doesn’t know anything about palliative care, and 14 percent were “somewhat knowledgeable.”

The researchers also found that it is difficult to inform physicians about palliative care, because they often wrongly equate it with hospice or end of life care.

Public Opinion Strategies

Palliative care becoming more popular

Palliative care is treatment that enhances comfort and improves the quality of life for patients in life’s last phase. No therapy is excluded from consideration, according to the National Hospice and Palliative Care Organization (NHPCO).

Palliative care is becoming increasingly widespread. There are more than 1,600 hospitals that have palliative care programs in the U.S., according to Dr. Diane Meier, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine. Some 85 percent of large hospitals have a palliative care team. Sixty-seven percent of small hospitals have programs.

Dr. William H. Frist, a heart transplant surgeon and former U.S. Senate Majority Leader, recommends palliative care. ”[A] brand new field in medicine is making chronic, agonizing, and even terminal illnesses much more manageable… palliative care has emerged as the best solution for those facing serious, painful diseases, and introduces the very real possibility… that we can now live with these diseases for a long time,” he wrote recently for The Week.

Public Opinion Strategies

Palliative care also costs much less than aggressive end of life regimens. Patients who receive palliative care services cost hospitals between $1,700 and $5,000 less per admission, according to findings published in the Archives of Internal Medicine.

Hospice care remains overlooked

Hospice care is different from palliative care; its aim is to manage symptoms so that a person’s last days are spent with dignity and quality. The care is not intended to treat the disease but the person, according to the American Cancer Society.

Hospice is most often used when curative treatment is no longer effective, and a terminal patient is expected to live about six months or less.

“Many people believe that hospice is only for people who have cancer. This may be due to the fact that many of the patients cared for in the early days of hospice were cancer patients,” Becky Hillier, public relations director for Rocky Mountain Hospice, wrote for the Montana Standard. Less than 25 percent of hospice patients admitted to the hospice are cancer patients.

The NHPCO reports that 36 percent of hospice patients die or are discharged within seven days of treatment. Many terminally ill suffer more than they need to because they wait to enroll in a hospice program.

“We continue to see more dying Americans opting for hospice care at the end of their lives, yet far too many receive care for a week or less,” said the NCPCO’s J. Donald Schumacher. “We need to reach patients earlier in the course of their illness to ensure they receive the full benefits that hospice and palliative care can offer.”

One reason the terminally ill wait for hospice, he said, is due to the misconception that hospice means giving up.

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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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