Tagged: Palliative medicine

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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In America, death is taboo

“Death denying” culture unfortunate result of medical innovation, says physician on Healthcare Decisions Day

Advances in medical therapies and technological innovation have led to a “death denying” culture pervading American health care, said Dr. Susie White, an emergency medicine physician at Provena St. Joseph Hospital, during a bioethics symposium at the University of Illinois-Chicago on National Health Care Decisions Day.

National Health Care Decisions Day aims to inspire and educate the public and medical providers about the importance of advance care planning.

White speaking to a room of medical providers, caregivers at symposium on NHCD Day
White speaking to a room of medical providers, caregivers at symposium on NHCD Day

“Many older patients find themselves in a position they never thought they would find themselves in,” White said. “We have gained 30 years in our life expectancy.” Prior to antibiotics and modern therapies, most people died quickly- from infections, malnutrition or fevers.

Now, only 10 percent of Americans die sudden, unexpected deaths, and the sick and dying receive care in hospitals.

These shifts have fueled a “death denying” culture, one in which many wish to suppress or avoid any sign of aging or illness, White said. Families may grow angry at doctors- or even the patient- when treatments fail.

White maintains that palliative care can help patients and their families, and that the relatively recent medical specialty has the potential to reverse this culture of denial. “What we want to do is form a team of doctors, nurses, chaplains, anyone who might be helpful in an individual’s case and help anyone who has a life- limiting disease,” she said. “We want everyone in the family on the same page and smooth transitions.”

Most patients should not begin palliative care during the process of active dying, but rather, much earlier- even at the onset of illness, White said. “Palliative care is not hospice, but is an extra layer of support, that can go along with aggressive treatments,” she said.

The Integritas Institute for Ethics, a program of the John Paul II Newman Center, arranged the symposium, which explored the ethical challenges that arise at the end of life.

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Connecticut assisted suicide bill finally gets a hearing

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Image: Wikimedia Commons

For the first time in Connecticut’s history, the General Assembly’s Public Health Committee allowed a legislative hearing about a physician-assisted suicide bill.

H.B. 6645 aims to allow physicians the ability to prescribe life-ending medications at the request of mentally competent, terminally ill patients. Patients would have to self-administer the drug.

Connecticut’s CBS affiliate reports that because Democratic State Sen. Ed Meyer of Guilford received so many phone calls supporting “Death with Dignity,” he chose to author the bill, which he insists is both compassionate and cautious.

“The bill that we’re hearing today, for example, requires two different physicians to certify under oath that the person is terminally ill, likely to die within six months and is mentally competent to make an informed decision about ending his or her life,” Meyer told WCBS 880.

Washington, Oregon and Montana have already approved the legislation known as “Death with Dignity.”

“If the legislators see the bill as providing a choice, an intelligent choice for people making an informed decision to end their life and end the misery and pain they’re going through at the end of life, I think the bill will go forward,” Meyer said.

However, the bill faces strong opposition from religious and social organizations, such as the Family Institute of Connecticut and Second Thoughts Connecticut. Such opposition could hold-up the bill’s passage.

“We will be killing our vulnerable parents and grandparents through public policy,” said Teresa Wells, a nursing home administrator, according to the Hartford Courant.

The Catholic Church has also been a vocal critic. The Church cites the lack of wait time between the necessary oral and written requests for drugs. Other states require a 15 day wait.

Meyer said he remains open to suggestions.

Proponents of the bill argue it would ensure individual freedoms at the end of life. “The deep yearning for increasing autonomy for patients themselves to have a voice, I think now it’s reaching a tipping point all across the world,” Compassion and Choices’ Barbara Coombs Lee told CBS. “I think the Baby Boomer generation has something to do with that.”

A similar bill was proposed in 2009, but it failed to garner a hearing. Connecticut has banned assisted suicide since the late 1960s.

Read the bill at Connecticut’s General Assembly Web site

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Hospice remains a last resort, despite increase in deaths

Image: AMIDA Hospice Care Inc.
Image: AMIDA Hospice Care Inc.

Although it seems more Americans are choosing to die in hospice instead of spending their last days in intensive care units, new findings published in the Journal of the American Medical Association show hospice is often a last resort, only after aggressive treatments fail.

Researchers studied more than 800,000  fee-for-service Medicare beneficiaries who died in 2000, 2005 and 2009. They were at least 66-years-old and died of cancer, dementia or chronic obstructive pulmonary disease. Findings show more seniors are dying in hospice, but the rate of ICU use in the last month of life is also higher. In 2009, some 30 percent of the decedents experienced the ICU in the last months of life. Some 12 percent had three or more hospitalizations in their last 90 days of life.

Although hospice use did increase from 22 percent in 2000 to 42 percent in 2009, about 30 percent used a hospice for three days or less.

“We are not getting the right care to the right people,” study author Joan Teno told Politico. “And if we want to improve care, we’ve got to change the incentives — and publicly report the quality of care.” Teno is a health policy expert at Brown University and a practicing physician at Home and Hospice Care of Rhode Island.

Patients are moving from their hospital bed to the ICU for aggressive treatments, and they then move to a hospice to die. Nearly one-half transitioned to hospice in the last two weeks of life. Teno connects these short-term stays to the growing pattern of greater use of intensive services at the end of life. Hospice becomes an “add on” that does not reduce hospital resources.

Moving across care settings can increase stress on the patient and disrupt pain medications. “This is extremely burdensome to family members watching their dying loved ones,” Teno said.

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Costs and benefits of end of life treatment: A TEDMED discussion

The lack of advance care planning persists

Costs and benefits of end of life treatment: A TEDMED discussion

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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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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“Consider the Conversation”: A discussion at Fourth Presbyterian Church

Film

The acclaimed “Consider the Conversation: A Documentary on a Taboo Subject” was screened at Fourth Presbyterian Church in Chicago on Wednesday, in collaboration with the Chicago End-of-Life Care Coalition.

Directed by longtime friends Terry Kaldhusdal, a fourth grade teacher and filmmaker, and Michael Bernhagen, a hospice advocate, the film showcases  interviews with health care professionals, religious leaders and the terminally ill in order to explain the importance of having the freedom to choose one’s end of life preferences. It also highlights the moral dilemmas surrounding the hastening of death, such as stopping eating and drinking, for those suffering and the artificial prolonging of  life.

Loretta Downs, the CECC president, thanked the audience for being brave enough to watch such an emotionally evocative film. “Now we are living for years with chronic illnesses that before would have killed us.  We think that we will never die, but we are required to talk about end of life,” said Downs, who is also featured in the documentary. “The film has inspired many people to have these conversations.”

The audience seemed to enjoy the film and engaged in a lively conversation afterwards. “I thought it was excellent, said Susan Thompson, 75. “It emphasized being natural in the most difficult moments of death and life.”

Downs acts out planning an advance care directive after film
Downs acts out planning an advance care directive with her colleague Daryl Isenberg, Ph.D., after the film for audience

Laura Pond, 54, said she did not like the film’s stance on hastened death. “I found it difficult to watch because I have a chronic illness and I thought people in the film were giving up,” she said. “You do not give up. It is not God’s plan.”

Marty Preiss, 60, said she found the film both compelling and engaging. She is planning a similar event for a screening at her church in Chicago’s  northern suburbs.

The film has also been well received by health care professionals. “I have never recommended a film on the end of life before. But people deserve to see “Consider the Conversation” because it deepens our passion for life and enriches our lives,” wrote Compassion and Choices’ Barbara Coombs Lee.

“Consider the Conversation” has won  multiple  awards,  including the Award of Excellence in End-of-Life Care from Agrace HospiceCare and the Silver Award of Excellence: Best Documentary or News Special from the Milwaukee Press Club.

Part two: “Consider the Conversation: A Documentary About Unintended Consequences” will be released early next year.

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Psychological responses to end of life

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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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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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