Category: Hospice and Palliative Care

Covering news of hospice, providing comfort and patient support when illness no longer responds to cure-oriented treatment, and palliative care, providing medical treatment to the symptoms, pain and stress of serious illness.

May 13, 2013

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

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.

Buehler Enabling Garden, an outlet for aged and ill

The Buehler Enabling Garden at the Chicago Botanic Garden provides individuals of all life stages a place to explore nature and reflect.

About twenty miles north from the Chicago Loop, the Enabling Garden is just one portion of the nearly 400 acre living botanic museum. While the other reserves and bigger gardens require lots of walking and even some climbing, the Enabling Garden caters to seniors and to the ill.

“We try to make this area as accessible as possible,” said Julie McCaffrey, the garden’s media relations manager. Most of the flower beds are raised to both provide easy access to visitors in wheelchairs and so that the elderly do not have to bend down to smell the flowers. Hanging baskets can also be lowered by pulleys.

Less obvious accommodations include smooth paving for wheelchairs, vertical wall gardens and miniature raised water fountains for “sensory enjoyment.”

Guided rails help blind visitors plant — Guided rails help blind visitors feel where to plant

“Many of these same ideas can be adapted in home gardens to create enabling gardens for a lifetime of easy, enjoyable gardening,” the garden Web site states. McCaffrey said some of the hospice patients who visit are inspired to garden at home. “It gives them something to take care of,” she said.

Hospice Dreams, a nonprofit that grants wishes to some hospice patients, recently sent an individual to the Enabling Garden. “It is so therapeutic for them to interact with plants and be with family,” McCaffrey said. “It would be great if hospitals started recommending this garden to their patients.”

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.

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.

“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

“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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February 10, 2013

Hospice remains a last resort, despite increase in deaths

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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January 28, 2013

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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January 6, 2013

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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December 4, 2012

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.

POS palliative 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.

POS political affiliation palliative care — 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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November 27, 2012

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.

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November 16, 2012

Beyond “The Sessions”: Intimacy at end of life

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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