Tagged: Cancer

Hope or denial in the face of death?

Pulitzer Prize winner recounts personal love story

Bennett 8.57.34 AM
Bennett family picture

What medical experts call denial, Amanda Bennett calls hope.

The Pulitzer Prize winning journalist and caregiver to her husband, Chinese historian Terrence Foley, sought to reframe the role of denial in the face of terminal illness during her presentation at the TEDMED 2013 conference in Washington, D.C.

“Denial isn’t even close to a strong enough word to describe what those of us facing the death of our loved ones go through,” says Bennett, whose recent book, The Cost of Hope, outlines the story of her quarter century romance with Foley, with whom she traveled the world and had two children.

Despite his cancer diagnosis, Foley thrived personally- traveling with his family to multiple continents, coaching Little League and even earning his Ph.D. in his 60s.

“We had a heroic narrative for fighting together, but we didn’t have a heroic narrative to letting go.”

Mysteriously, Bennett says, he continued to surpass all expectations. Meanwhile, she buried herself in internet research in search of a cure that was not to be found.

His health dramatically declined in December 2007, and as Foley began to spit blood during what would be his last stay in intensive care, his doctors asked Bennett what she wanted them to do.

The couple had advance directives in place, directives that ordered doctors to do nothing if no further hope was to be had.

“Keep him alive if you can,” she told his physicians. After all, Foley had repeatedly dodged all dire predictions for the past seven years and had recently started a new regimen of experimental therapy. Bennett continued to hang on to the slightest of indications that he could continue to live.

As her husband’s health worsened over the next week, she grew more resolute. “We believed if we were smart enough, strong enough, brave enough and worked hard enough, we could keep him from dying forever,” Bennett recalls.

But Foley died December 14th, 2007, and Bennett says she never said goodbye.

“We pushed the fight right over the edge, and I never got the chance to say to him, ‘hey buddy, it was a hell of a ride,’ ” Bennett remembers, noting in retrospect, that no wife- no matter how hard she tries- can stop the bravest of husbands from dying when it is his time.

Hope

Bennett would not consider hospice, because to her it meant defeat.

“We had a heroic narrative for fighting together, but we didn’t have a heroic narrative to letting go,” Bennett says, suggesting there are many “noble” paths available for curing disease, but no such culturally “noble” path to die.

If she had been able to shift her perspective, she says, perhaps watching Foley die would have been easier on them both. That perspective could be broadened: from fear of hopelessness at the end of life to, instead, repeated victories in the face of cancer, a lengthy battle, and then a graceful retreat in death.

“Not even the greatest general defeats every foe,” Bennett says, and such a framework of a triumphant, manly crusade through illness into death would have been a much more workable mindset than hope- and the subsequent lack of it.

Death, she argues, is not the enemy, but she knows most think it is.

“I believed I could keep him from dying, and I would be embarrassed to say that if I hadn’t met so many people who have felt the same way.”

For more of Bennett’s story: thecostofhope.com

-Randi Belisomo

More from the Life Matters Media Newswire:

Preparing for the dementia tsunami, a TEDMED discussion

Death over dinner? There’s an appetite for it

End of life questions from Catholics tackled at National Healthcare Decisions Day symposium

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.

Learn more from the Life Matters Media Newswire:

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

The lack of advance care planning persists

Spirituality at end of life: Practitioners remain hesitant

Spirituality

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

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

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

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

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

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

Stanford School of Medicine
Stanford School of Medicine

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

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

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

Learn more from the Life Matters Media Newswire:

Beyond “The Sessions”: Intimacy at end of life

Catholic hospitals: Doctrine trumping patients’ wishes

Is hospice care really best?

More Latinas need advance care plans, a new study reveals

Little is known about the advance care plans of Colombian, Mexican and Puerto Rican women living the in the U.S., according to a new study commissioned by the University of South Florida. Researchers sought to identify decision-making patterns among Latinas and found language proficiency and health care access make it harder for them to plan for their end of life care.

Advance care planning involves learning about the types of decisions that might need to be made in case of a medical crisis or the end of life and aims to ensure an individual’s desires are carried out. Advance care planning is especially important for Latinas who experience social inequalities, discrimination and language barriers, the researchers note.

Researchers recorded Spanish language interviews with 45 Latinas in Central Florida who had been diagnosed with cancer. The majority of women, 35 in all, identified obstacles to information about planning, including insurance and financial factors. Only 10 women had completed at least one form associated with advance care planning. Only three of those 10 women had completed a living will, designated a health care surrogate and an enduring power of attorney.

Of the ten women who had taken steps to plan, four were Colombian, five were Puerto Rican and one was Mexican. Among the Colombians, three had only a living will and one had a living will, a designated surrogate and an enduring power of attorney. Two Puerto Rican women had a living will, a designated surrogate and an enduring power of attorney, two had just a living will, and one had both a living will and power of attorney.

Advance care planning among Colombian, Mexican, and Puerto Rican women with a cancer diagnosis
Advance care planning among Colombian, Mexican, and Puerto Rican women with a cancer diagnosis

Another 13 women stated they knew of advance care planning but had not completed any forms. According to researchers, “none [of the 13] were able to satisfactorily articulate the definition of ACP,” hinting at miscommunication within care settings.

A living will is a written document that tells doctors how a patient wants to be treated if permanently unconscious or incapable of making decisions about emergency treatment, according to the National Institute on Aging. A power of attorney is a legal document that names a healthcare proxy, someone to make medical decisions on behalf of a patient unable to do so.

Some Mexican women acknowledged the nature of their cancer diagnoses and informally discussed their wishes with family members, an unrefined form of planning. They trusted that their desires would be fulfilled, indicating a preference for family discussions instead of clinical ones.

The study, also supported by the Division of Population Sciences and the H. Lee Moffitt Cancer Center and Research Institute, aims to remedy the lack of information available on Latinas.

“The rapid growth among these three groups in the USA highlights the urgency of addressing ACP and decision making, given the increased risk of cancer among Colombians, Mexicans, and Puerto Ricans residing in the USA,” the researchers wrote. Cancer is the second leading cause of death among Latinos in the U.S., accounting for some 20 percent of deaths.

Researchers conclude that knowledge gap exists between the Latinas they studied. This gap stems perhaps as a result of immigration/migration history and lower levels of education, English language proficiency and income. Latinas who have been in the U.S. for a longer period of time knew more about advance care planning. More Spanish language forms and simpler language, they say, may help more Latinas create advance care plans.

Learn more from the Life Matters Media Newswire:

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How POLST forms clarify wishes: Three scenarios

Life Matters Media featured in the Atlantic

Life Matters Media co-founder Mary F. Mulcahy, M.D., has shared her experiences treating the terminally ill for a new feature in the Atlantic.

Mary F. Mulcahy
Mary F. Mulcahy

When fighting cancer isn’t worth it

The war on cancer is a civil war. It is a battle of two armies, cancer and therapy, fighting it out within a common space. It is an unfair fight.

A recent article in the Washington Post describes a controversial surgery devised by a pioneering and big-thinking surgeon, Paul Sugarbaker. This surgical procedure, known as cytoreduction and heated intraperitoneal chemotherapy (HIPEC), removes metastatic cancer before bathing the abdominal cavity in heated chemotherapy. There are many who celebrate it as life-saving, some who loathe it as toxic, and others who debate its merits and shortcomings endlessly.

Read the rest at the Atlantic.

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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.

Learn more from the Life Matters Media Newswire:

Occupational stress: Doctors may suffer when unable to save lives

Terminally ill opt for less treatment when in communication with doctors

Palliative visits provide welcome relief

Illinois lawmaker pushes for medical marijuana bill

Illinois lawmaker pushes for medical marijuana bill

An Illinois sponsor of a medical marijuana measure says he may have enough votes to pass the bill in the Statehouse, the Chicago Tribune reports. Rep. Lou Lang, D-Skokie, says his ”nose count” has him near the 60 votes needed for approval of a three-year trial medical marijuana program called the Compassionate Use of Medical Cannabis Pilot Program Act, which would be a first for Ill.

“If members vote their consciences, I’ll have the votes,” said Lang, who fell short a handful of votes last year, although the Senate approved similar previous legislation in 2010.

This season may be different, however, because three dozen lawmakers in the House and Senate are not coming back in the next General Assembly, making them lame ducks, Ray Long reports. “Their votes are more likely to be up for grabs given that they are not expected to face the voters again.”

CBS News reports that advocates of medical marijuana are in Springfield to lobby state lawmakers to approve the use of medical marijuana with strict limitations. The drug would only be prescribed by doctors, in small amounts, to qualifying terminally ill patients or their designated caregivers. Individuals suffering from AIDS, cancer, multiple sclerosis or a “debilitating medical condition” may qualify.

A qualifying patient or caregiver would only be able to legally possess 6 cannabis plants and 2 ounces of dried usable cannabis during a two-week period.

State Rep. Jim Durkin, R-Countryside, opposes the measure because he fears it will make the drug more available. “Just in the last two weeks in DeKalb, there was a 10-pound traffic stop of medical marijuana that came from Oregon,” Durkin said.

The AP reports that Rep. Jim Sacia, R-Freeport, acknowledges that Lang may have enough votes to pass the measure, but the former FBI agent still plans to fight it. “I just see it as a tremendous mistake,” said Sacia.

Lang may bring the measure to vote this week at the General Assembly. He told the AP that there are ”a whole bunch of people who are wavering.” He will work over the weekend before putting the measure to vote, although he may be close to the 60 votes needed.

Medical marijuana supporters have already won local approval for medical use in 18 states and D.C. Voters in Colorado and Washington chose to legalize marijuana, although, the federal government currently lists marijuana as a Schedule I controlled substance, meaning it has no medically accepted use and high potential for abuse.

Learn more from the Life Matters Media Newswire:

Terminally ill opt for less treatment when in communication with doctors

Feeding tubes: Families struggle with the decision

Terminally ill opt for less treatment when in communication with doctors

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, according to a new study published in the Journal of Clinical Oncology. Instead, these patients end life more comfortably at home or in hospice care, and as a result spend much less on hospital care.

“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 Dr. Jennifer Mack, lead author of “Associations Between End-of-Life Discussion Characteristics and Care Received Near Death: A Prospective Cohort Study.”

“We should at least consider having these discussions soon after diagnosis if we know that a patient has incurable cancer,” Mack, from the Dana-Farber Cancer Institute in Boston, told Reuters Health.

The researchers studied more than 1,200 patients with stage IV lung or colorectal cancer who survived at least one month from the time of diagnosis, but died during the 15-month study period. Using interviews of the patients and/or their caregivers and a comprehensive medical record review, the researchers determined if and when the patients had discussions with their doctors about end of life.

Researchers found that 88 percent had end of life discussions, but more than one-third of those took place less than a month before the patient died. Those patients who had end of life discussions documented in the medical record but did not recall them in the patient or surrogate interviews were more likely to have chemotherapy within the last 14 days of life, or acute intensive or hospital care within the last 30 days of life.

Patients who reported having the discussions with doctors were almost seven times more likely to end up in hospice than those who didn’t have those talks. Hospice focuses on comfort care and pain management for terminal patients, instead of treatment.

“A lot of patients don’t want (aggressive treatment), but they don’t recognize that they’re dying or that this is relevant for them,” said Dr. Camilla Zimmermann, head of the palliative care program at University Health Network in Toronto. She wasn’t involved in the study.

She told Reuters: “The earlier you discuss these things, the more options you have. If you wait too long, you end up having these discussions with someone you don’t know, that you just met, in an inpatient setting,” instead of with your primary doctor.

According to Mack, ”If we start these conversations early, then patients have some time to process this information, to think about what’s important to them (and) to talk with their families about that.”

In 2010, Medicare paid $55 billion for 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. Twenty to 30 percent of those medical expenses may have had no meaningful impact on the patients’ health.

Reuters is reporting data from the Dartmouth Atlas of Health Care, which found that 32 percent of total Medicare spending goes to caring for sick patients in their last two years of life.

National guidelines recommend patient-physician talks begin soon after a terminal cancer diagnosis. Researchers found that physicians initiated end of life discussions an average 33 days before death.

Learn more from the Life Matters Media Newswire:

Feeding tubes: Families struggle with the decision

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

Beyond “The Sessions”: Intimacy at end of life

Dr. Richard Wagner

Dr. Richard Wagner, a Seattle based clinical sexologist, spoke with Life Matters Media this week about the many positive effects physical intimacy may have on the terminally ill. As the critically acclaimed film The Sessions has brought this topic to the forefront, it has left in its wake many issues in which to delve deeper. Wagner, a former Roman Catholic priest, is the author of  ”The Amateur’s Guide to Death and Dying: Enhancing the End of Life.” He has practiced sex therapy and relationship counseling for more than three decades.

You have a degree in theology from the Jesuit School at Berkeley, and you’re a former priest. How did you get involved with end of life and intimacy? 

I was a Catholic priest for 20 years. While that wasn’t a particularly happy association, I’m the only Catholic priest in the world with a doctorate in clinical sexology. I wrote my doctoral thesis on the sexual attitudes and behaviors of gay priests in the active ministry in 1981.  That was long before the Church was willing to acknowledge there was even such a thing as a gay priest. The fallout from this research blew my ministry out of the water.

In 1981, the same year I finished my doctorate, a remarkable thing was happening to gay men in San Francisco and elsewhere. They were dying of some mysterious disease. Some speculated that this was God’s retribution for the gay lifestyle.  How quickly we leap to that conclusion when we are ashamed and frightened.  Most of my friends died in the first wave, between 1981-85. None of us knew what to do. My friends looked to me for guidance, since I had a background in psychotherapy and religion.  But, to tell you the truth, I was just as lost as anyone.

I found myself sitting with all these men as they were dying. It was ghastly. But sitting with death was precisely what I needed to do.  It helped me to desensitize death and prepared me for what was to come.  I realized early on that dying in America is often a very lonely and very passive affair.

I wrote the “Amateur’s Guide” because of the work I was doing with sick, elder and dying people – not just AIDS patients. I saw this pattern develop; the end of life is more difficult than it needed to be. In response I founded Paradigm, a nonprofit organization with an outreach to enhance life near death for sick, elder, and dying people. It provided an opportunity for participants to discuss end of life concerns and get the support they needed to fully live the end of their life. The program was so successful; I decided to put the program in book form.

Let’s talk about intimacy and end of life care.

Just because someone is dying doesn’t mean that they have stopped being human. One of the things that humans need in their life is intimacy.  And sometimes that intimacy involves genital sexuality. But this concern is hardly ever talked about in terms of the end of life, nor is it included in disease-based discussions. I mean, when is the last time you heard someone talk about the sexual concerns of people with cancer or heart disease? Our culture is uncomfortable with the concept of sick, elder, and dying people having such desires. But if you listen to these folks they’ll tell you what they need and ho difficult it is to live without.

Could sexual intimacy be considered a form of palliative care?

I would think, yes. If you’ve had an active intimate/sex life up until the point you were diagnosed and then all that suddenly disappears, there will be problems. I’m not just talking about genital sexuality; I’m talking about all intimacy needs we humans have — being present to, touching, as well as pleasure. It’s all about what is possible, on a personal level, with one’s intimate partner(s). So many people, even people who love sick, elder, and dying people don’t know how to touch them.  And sick, elder, and dying people often report that the only touch they receive is very clinical touch. And that’s not all the life affirming, if you ask me.

Wagner has also shared thoughts on the critically acclaimed film “The Sessions” for Life Matters Media.

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POLSTs work, says Respecting Choices’ Bernard Hammes

End of life costing more than total assets of seniors

A quarter of Medicare recipients spend more than the total value of their assets on end of life care, according to a new study published by the Mount Sinai School of Medicine.

Deductibles, co-payments and home care are not covered by Medicare. “Prior to this study there was not a lot of data on the extent of out-of-pocket spending,” said study author Amy S. Kelley. “I think a lot of people will be surprised by how high these out-of-pocket costs are in the last years of life.”

The Washington Post / Wonkblog

The study relied on data from 2002-2008, which was collected from the Health and Retirement Study and supported by the National Institute on Aging and the Social Security Administration. Researchers used data on 26,000 Americans over the age of 50 and 3,209 Medicare recipients during their last five years of life.

The study found that 43% of Medicare recipients spend more than their total assets without the value of their home included. More than 75% of respondents paid at least $10,000 in out-of-pocket expenses for end of life care.

Patients suffering from dementia or mental illness often pay more for their care, because special living arrangements are needed. The amount of spending varied by diagnosis. Science Codex reports: ”Those with dementia or Alzheimer’s disease spent the most for health care, averaging $66,155, or more than twice that of patients with gastrointestinal disease or cancer, who spent an average of $31,069.”

The Washington Post / Wonkblog

The study concluded that the elderly patients facing end of life issues are at serious financial risk from health care related expenses. “A new generation of widows or widowers could face a sharply diminished financial future as they confront their recently-depleted nest egg following the illness and death of a spouse,” Kelley is quoted in The Washington Post.

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