Tagged: Terminal illness

Unreasonable optimism among physicians common during end of life care

Unreasonable optimism among physicians negatively impacts patients’ end of life care- often influencing the terminally ill to accept more aggressive, costly treatments with little chance of effectiveness.

Image: Wikimedia Commons
Image: Wikimedia Commons

Haider Javed Warraich,  a resident of internal medicine at the Beth Israel Deaconess Medical Center, recounts his optimism when he first met a woman suffering from heart failure and a condition preventing blood from flowing out of her heart.

“While learning her medical history, I also got to know her,” Warraich writes. His patient was a 50 year-old former artist, derailed by addiction. “At this point, she wasn’t a suitable candidate for heart surgery. But I felt there was still hope,” he recounts in The New York Times Sunday Review.

With perseverance, Warraich convinced his colleagues to order a procedure called alcohol septal ablation. Though the procedure could potentially reduce her symptoms, it came with many risks. His patient died the next day, after a complete heart block and aggressive attempts to revive her.

Warraich explains that he was victim of “irrational optimism, a condition running rampant in both doctors and patients, particularly in end of life care.” These physicians may push for costly and more aggressive treatments as a last resort, even when there is little hope of recovery.

As a study published in 2000 for the British Medical Journal shows, about two-thirds of doctors overestimate the survival of terminally ill patients. ”Doctors are inaccurate in their prognoses for terminally ill patients and the error is systematically optimistic,” concluded the researchers, headed by Nicholas A. Christakis, then of the University of Chicago.

Many times, those poor estimates are never fully communicated to the patient. A 2001 study of cancer patients published in the Annals of Internal Medicine found that physicians only told patients their estimated survival 37 percent of the time. No estimate was given 23 percent of the time. “Around 70 percent of the discrepant estimates were overly optimistic,” Warraich notes.

A 2012 study published in the Journal of Clinical Oncology found that cancer patients who talk with their physicians about how they want to die are less likely to opt for aggressive end of life treatments in the last two weeks of life, and they have much more comfortable deaths.

“Aggressive care at the end of life for individual patients isn’t necessarily bad, it’s just that most patients who recognize they’re dying don’t want to receive that kind of care,” said lead author Dr. Jennifer Mack of Harvard University Medical School.

Similarly, Warraich suggests more palliative care for patients unlikely to survive a serious illness. “Modern palliative care originated in response to the proliferation of new treatments and resuscitation technologies,” he writes. Palliative care not only provides more comfort alongside standard treatments, but it has been shown to help patients live a little longer.

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Image: Couple by George Hodan
Image: Couple by George Hodan

Modern medicine allows the terminally ill to survive longer than ever, but debate continues about how much should be spent on aggressive end of life care and if such care is actually best for patients. TEDMED facilitated a live discussion about some possible solutions to these challenges with industry experts this week, as part of its Great Challenges series.

In 2010, Medicare paid $55 billion on doctor and hospital bills during the last two months of patients’ lives- more than the budget for the Department of Homeland Security, according to CBS News. Some 20 to 30 percent of those medical expenses may have had no meaningful impact on the patients’ health, according to the analysis.

The discussion tied those problems to the need for better advance care planning and communication between doctor and patient. End of life concerns take an emotional toll on a patient’s family and friends, especially in the absence of advance care plans, such as a living will or POLST form.

Some families may insist on more aggressive care for the patient because of religious or societal expectations. Some doctors do not adequately communicate a patient’s condition to family, providing loved ones with the false sense that more treatment will work. This failed communication often results in increased spending.

Medical schools continue to improve training in how to listen to patients and mind the severity of illnesses, said Richard Payne, M.D., professor of medicine and divinity at Duke University. “Generally, there is much more emphasis now on teaching doctors to listen empathically to patients and their wishes,” he said.

Although it may be difficult and uncomfortable, it is important to speak with loved ones about death and dying ahead of time, said Bruce Jennings, director of bioethics at the Center for Humans and Nature. “Advance planning and treatment planning are very important aspects of ensuring that the kind of care you receive at the end of life will be beneficial for you, and will respect your wishes and dignity,” Jennings said.

Debate about end of life care will become increasingly common. In 2000, there were more than 35 million Americans 65 and older. By 2030, there will be 72 million.

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Psychological responses to end of life

Nurses’ positive attitudes towards death and dying can alleviate the suffering of some terminally ill patients, according to new findings from Spanish researchers published in the International Journal of Nursing Studies.

Lead researcher Rafael Montoya-Juarez, from the University of Granada, and others sought to identify the psychological responses the terminally ill put in place to deal with the demands the end of life brings. The study is intended to be “a foundation for future nursing interventions.”

Researchers questioned 24 patients from various hospitals across Granada using a phenomologic approach. “Phenomenology is the appropriate theoretical approach to the study of suffering,” the researchers explain. “Because we assume a model of suffering based on the response to threats, we have transcended the purely descriptive approach by interpreting the data in light of this model.”

The participants’ answers to these questions allowed the researchers to identify a main category titled, “To realize that life is short.” As coming to terms with life’s finite nature is a main source of psychological discomfort for patients, it is also a starting point for developing psychological responses to reduce suffering.

Three categories emerged that showed different ways participants came to terms with death: “Re-Evaluation of life,” “Opportunity for growth” and “Resignation/Acceptance.”

Upon re-evaluating their lives, some patients became hopeful and reassured in feeling they met life’s major goals. “I have already done, as they say, the thing in life. I got married, I raised a child, I planted many trees in the field and I have done harm to no one and I am thus waiting for whatever God wants,” one participant said.

Others reported feeling more frustrated. ”This is one of the most saddening things, when you truly realize that life has an end, and you think, I did not do this or the other,” another participant told researchers.

Still, the dying process provided some participants with an opportunity for growth, the conviction that a terminal diagnosis helps determine one’s place in life. Those with this mindset tended to appreciate the simpler things in life. ”The illness has caused me to see life from a totally different perspective, to enjoy the small things and the big things, and to undervalue others,” another said.

Others said they felt  relieved that  life was coming to an end, and they had a sense of acceptance. “One has to accept and consider it as good because there is nothing that can be done about it,” one participant said. “You have to accept everything.”

Gender seemed to play a role in how an individual responded to a terminal diagnosis and death. Out of the fifteen men and nine women studied, men were more concerned about the loss of their job, social relationships and loss of physical functions. Women spoke more about their homes and daily routines, especially caring for their children. Women were also more likely to bring religion into their struggle, as if it were part of God’s will.

Nurses can alleviate the emotional impact of terminal illnesses on their patients by encouraging these psychological responses, the study concludes. Montoya-Juarez recommended that nurses provide realistic and achievable short-term goals for their patients, facilitate communication with family and enhance the feeling of satisfaction with life.

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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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Life Matters Media co-founder Mary F. Mulcahy, M.D., has shared her experiences treating the terminally ill for a new feature in The Huffington Post. She continues to spread the message of advance care planning.

“Advance care planning is a dynamic process that evolves over time as a person’s health goes from well, to ill, to ultimately terminal. Less than 10 percent of people will die suddenly; most of us will experience a protracted life-threatening illness. Medical advances have led to few cures of illness, have prolonged the experience of living with chronic illness and have prolonged the process of dying. Add to this the fact that for the next 18 years, baby boomers will be turning 65 at a rate of about 8,000 each day, and it is clear that the role of advance care planning needs to be embraced,” Mulcahy writes.

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Life Matters Media featured in Al Jazeera

Life Matters Media co-founder Mary F. Mulcahy, M.D., is spreading the message of the importance of advance care planning in her op-ed for Al Jazeera. 

“Developing an advance care plan helps us prepare for unexpected events that render so many incapable of making health care decisions. They provide an opportunity to express what functional capacity provides us all with some standard of fulfillment. That standard is individual, but may require the ability to interact with loved ones, to attend to basic personal care, or to live independently. These are personal goals that we can define,” Mulcahy writes.

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Choosing not to eat and drink: Some terminally ill hasten death

Armond and Dorothy Rudolph, Courtesy Compassion & Choices

The choice to stop eating and drinking is a legal and ethical option to hasten death, says end of life counselor Judith Schwarz of Compassion and Choices, an organization that provides support to terminally ill patients. Schwarz discussed voluntary stopping of eating and drinking, or V.S.E.D., with Terry Gross on NPR’s weekday magazine, Fresh Air.

Compassion and Choices counselors can advise willing patients about informed decisions that may hasten death. “Many people have implanted cardiac devices and defibrillators,” as Schwarz explains. “Those need to be turned off if you want to get your death to happen naturally or in a more hastened fashion.” Some people also opt to stop taking medications.

Her organization facilitates talks with patients and families about the decision to stop eating and drinking. “It’s a process, it needs to be well understood. There needs to be support,” says Schwarz. “There are lots of things in place for it to be ‘successful.’ And by successful, I mean a peaceful death that happens within days or two weeks.”

Patients die of dehydration, not of starvation, she explains. This point is often misunderstood. Schwarz maintains that patients don’t even feel hunger, but they become drowsy from lack of hydration. As dehydration progresses, patients become sleepier. They then slip into a coma before death.

“It is often the case that people, as they get close to the end of life, just lose interest in their surroundings, in their loved ones and in food and fluid,” Schwarz says. “People have been dying this way for generations, for thousands of years.”

She acknowledges that forgoing water can be difficult, for both the patient and for his or her loved ones. “Some people have a really tough time with a dry mouth,” she says. “You need to have lots of supporting and skillful caregiving and oral care.”

V.S.E.D. is legal in every state for the terminally ill. “That a competent person can refuse any medical intervention, including tube feeding, has been recognized by the Supreme Court,” says Charles Sabatino in The New York Times. Sabatino directs the American Bar Association Commission on Law and Aging.

Voluntarily stopping eating and drinking remains controversial

However, Armond and Dorothy Rudolph, married for 69 years, were evicted last year from their assisted living facility in Albuquerque, N.M. for choosing to stop eating and drinking.

Mr. Rudolph, 92, suffered severe pain from spinal stenosis and had a permanent catheter. Mrs. Rudolph, 90, was immobile. Both suffered from the onset of dementia, and they consulted with Compassion and Choices about V.S.E.D.

Officials at their facility, the Village at Alameda, called 911 after learning of the couple’s plans to report attempted suicide.

Mrs. Rudolph later described her condition to The Albuquerque Journal. “Life is miserable,” Dorothy Rudolph said, when asked why she wants to die. “Our bodies are pretty rotten by now. You name it, I’ve had it.”

Squad vehicles and emergency personal arrived at the facility, with University of New Mexico’s emergency medicine department’s Dr. Drew Harrell.

“They were able to very appropriately and eloquently explain their wishes and what they wanted to have done,” Harrell said. “They didn’t feel the need to go to a hospital. They detailed that they wanted control over their own end of life issues.”

The couple’s son, Neil Rudolph, later spoke with ABC News. “Nearly 1 million Americans live in these facilities, yet most don’t know how their end of life rights could be infringed upon as my parents’ were,” he said. “Their eviction shocked me. I think it’s inhuman for mentally competent adults to be overruled at the end of their lives by an assisted living facility administrator, or by anyone else.”

The couple eventually moved to a private home, where Mr. Rudolph’s ten-day fast resulted in death. His wife died the next day, surrounded by family.

The facility released this statement: “Assisted living facilities are equipped to provide assistance with activities of daily living such as eating, dressing and bathing.

“If we can see that someone in our care requires alternate placement, medical attention or a level of care beyond the facility’s capabilities, we have an obligation to notify a medical provider.”

ABC News interviewed Marshall Kapp, director of the Florida State University Center for Innovative Collaboration in Medicine and Law, about the Rudolph ordeal.

“Legal apprehensions probably played a big part in their decision, along with the fear of bad publicity,” Kapp said about the Village at Alameda. “A facility retains the right to evict somebody if they can’t care for them properly most of the time, so you’d have to look at the contract they signed.”

Sabatino says that those who oppose the act for religious or ethical reasons (or for fear of lawsuits) can throw up roadblocks. “While the theory may be clean, the execution may get messy.”

According to a 2003 study on V.S.E.D. by the New England Journal of Medicine, most V.S.E.D. deaths are “good” deaths. Oregon hospice nurses explain, “Unbearable physical suffering did not appear to be an important reason for this choice. According to the nurses’ reports, most deaths from voluntary refusal of food and fluids were peaceful, with little suffering, although 8 percent of patients were thought to have had a relatively poor quality of death.”

Listen to the Fresh Air interview at NPR.

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Nursing home residents often receiving inadequate end of life care

Nearly one-third of Medicare beneficiaries use the program to pay for the last six months of life while in nursing homes, even though most facilities are not properly equipped for comfort or treatment, according to a new study published in the Archives of Internal Medicine.

According to lead researcher Katherine Aragon, M.D., of the University of California at San Francisco, nursing homes should be reconsidered as a first choice for end of life care. “Often our focus on these patients is trying to keep them functional or independent for as long as we can. What we may be overlooking is that they are on an end-of-life trajectory,” Aragon says.

Nursing homes are designed for rehabilitation and long-term care. Nursing homes differ from hospice or palliative care centers, which focus on comfort care for those facing imminent death. According to the study, “In the last 6 months of life, many older adults will experience a hospitalization, followed by a transfer to a skilled nursing facility (SNF) for additional care.”

The researchers conclude that there is a lack of understanding about who actually uses nursing homes. “Our finding that Medicare decedents commonly used SNF (skilled nursing facilities) care at the end of life suggests a need to better understand who is using the SNF benefit and whether they are receiving care that matches their goals,” according to science and technology website RedOrbit.

The federal health insurance program Medicare is for seniors and the disabled. It only pays for 100 days of skilled nursing facility care after a person is hospitalized for at least three days, Reuters reports. “Under those benefits, the program pays 100 percent of the bill for the first 20 days of care, and all but a $144.50 per day copayment after that.”

The study analyzed more than five thousand people between 1994 and 2007. Thirty-one percent of beneficiaries used nursing home benefits in the last six months of life, and 9 percent died while using homes at the average age of 83.

Study researchers conclude that palliative care should be incorporated into nursing home care.

Reuters spoke with Dr. Peter Boling, a professor of geriatric medicine at Virginia Commonwealth University Medical Center. “It ends up being all about the money in the end, which is always the case,” Boling says. He asserts that it would require legislative or regulatory action to reimburse homes for palliative services.

The study’s researchers also encouraged commentary from Boling who writes: “Reflecting on this study, about half of the SNF users did not die in the nursing home and ultimately went home, despite having significant frailty. We must all carefully avoid rushing to judgment and imposing end-of-life care protocols when reasonable vitality and quality of life remain, despite chronic illness burden.”

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Telling your child about terminal illness

Hiding terminal illness from children can cause unnecessary stress on parents, confusion and anger for children, and a lack of much needed family support during treatment or end of life care, writes the American Cancer Society.

Clinical psychologist, author and Huffington Post writer Joseph Nowinski argues that children know more about death and dying than parents think, so they should be told the truth about a parent’s illness. Nowinski asserts that children have an idea of what death is, often understood in abstract from fairy tales or in real life from school.

Pam Wolf / NY Kids Club

“My 10-year-old daughter, for example, surprised me one day with this knowledge. When told that an older cousin had been diagnosed with leukemia, she replied, ‘I know about leukemia. A girl in my class has it,’ ” Nowinski notes.

The American Cancer Society recommends telling children about terminal illness in stages to help protect them. “Children need to be told the truth in manageable doses and given a chance to adjust to what they can understand while still going about their everyday lives.”

Stages are important, experts say, because children comprehend time differently than adults. Children’s egocentric worldview can be difficult to penetrate, especially when death is imminent. “Because a child’s concept of time is so different from an adult’s, your children may not cope well with many months of waiting for a parent to die. So talk to them gradually and only when you are fairly certain that this will happen in the near future, as in days or weeks,” the American Cancer Society recommends.

Nowinski does not advocate blunt and aggressive talks with children. Instead, he encourages nuanced and age-appropriate discussions. The type of discussion should depend on the child’s emotional, cognitive and social development.

While it may be tempting, he says, never give a child more information than he or she can absorb. Nowinski advises parents to remember that children are sensitive to the emotional moods and non-verbal communications of adults. He writes, “they sense when a parent is upset … So it makes sense to us to open communication rather than avoiding it.”

The American Cancer Society also advises that children need to be told the truth about terminal illness, because they need to be prepared for what may happen. Not preparing a child for a parental death can make the child feel unimportant, or even afraid of dying.

Perhaps the most traumatic unintended effect of not discussing illness with a child is that the child begins to believe it is his or her fault. “No parent intends this, but because children often cannot explain what they think and how they feel, not preparing them leaves them alone to make sense out of this critical event in their lives,” according to the American Cancer Society.

Similarly, ABC News parenting contributor Ann Pleshette Murphy spoke to children of parents with terminal illnesses in light of the cancer diagnosis of entertainment critic Joel Siegel. He had a son who was 3-years-old at the time. ”It is so natural for parents to want to protect their kids,” Murphy says.

She talked with 16-year-old Ted Summers, who had some advice. “Tell your kid what is going on and everything that you know and all the consequences because a kid’s imagination wanders on and they, you know they worry about a bunch of things,” Summers told her.

The teen did not respond well to the shock of his own mother’s chemotherapy. “The first time I saw her she didn’t have any hair, and I got mad at her and I yelled at her and I said ‘You’re not my mom, I don’t know who you are.’ ” A change of appearance, for example, can make a child angry, reports ABC.

Besides avoiding shock, there are other benefits to telling children about terminal illness and death. Sometimes, children help distract parents from dwelling on illness. According to Murphy, “Some parents say that the most astonishing thing about cancer was learning how to survive it from their children.”

Seven-year-old Noris Weston talked Murphy about how he helps his mom with her terminal diagnosis. “Some of the things I do to make her feel better is hug her, kiss her, rub her back.”

Ten-year-old Andrew Pavia was able to become more confident after learning of his mom’s illness. “I had a lot more responsibility than I did before, and I felt that after that I could basically get through anything.”

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