Dying At Home More Difficult Than Expected

Dying At Home More Difficult Than Expected

Posted on Monday, January 28th, 2013 at 7:49 am by Life Matters Media

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 OncologySome 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.

Spirituality At End Of Life

Posted on Friday, December 28th, 2012 at 5:07 pm by Life Matters Media


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.

Terminally Ill Opt For Less Treatment When In Communication With Doctors

Posted on Tuesday, November 27th, 2012 at 1:43 pm by Life Matters Media

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.

How Much Is Three Months Of Life Worth?

Posted on Friday, August 31st, 2012 at 7:54 pm by Life Matters Media

Some oncologists believe that the near-constant developement of new cancer treatments does more for the pharmaceutical industry than for patient recovery. Many popular drugs that aim to fight cancer have had limited success, partly because many of the disease’s genetic traits remain unpredictable. Laura Beil’s latest feature in Newsweek focuses on the cost-benefit dilemma. Is it justifiable to tack on high costs to an already burdened health care system for a few more months of life?

Avastin, Perjeta and proton radiation all had positive hype upon approval and have been used by thousands of Americans cancer patients. But, Avastin’s cost is extraordinary.

Beil writes: “Consider the popularity of Avastin, a targeted drug approved for metastatic colon cancer in 2004. A recent study found that almost 70 percent of patients on chemotherapy were receiving Avastin within a year of its release. In clinical trials, the drug increased survival by about five months. The cost? About $10,000 a month.”

Perjeta, a first-line treatment for metastatic breast cancer, was also highly anticipated. Dr. Lowell Schnipper, chief of oncology at Beth Israel Deaconess Medical Center in Boston, says: “Perjeta gives the average woman only about six months more of calm before her disease starts to stir again. Given the limited benefit, the price was startling. For most women, a full course of the drug combination will cost $188,000.”

In 2001, there were three centers offering proton treatment in the U.S. There are now ten, and six more planned. Mayo Clinic has already began planning for a center in Arizona, while 21st Century Oncology has begun plans for a New York facility, both slated for 2016. Three quarters of patients using these facilities are men with prostate cancer who are covered by Medicare.

Pharmaceutical companies have two main advantages when it comes to health care costs. Many doctors and patients are willing to try new and expensive treatments, even with limited hope of therapeutic benefit.

They also justify costs of drugs. “Pharmaceutical companies say it’s payment for scientific creativity, that high prices are necessary to recover the expense of developing and manufacturing their products and to encourage more research,” writes Beil.

A 2004 study published in the Journal of Clinical Oncology found that “the drug companies are not pricing their drugs to recuperate losses associated with research and development, marketing, and operating prices, but rather [the average wholesale price] depends on what the market itself can bear.”

Reuters also reports on the growing financial costs of cancer treatments. “U.S. spending on oncology drugs and their administration is expected to rise more than 20 percent annually for the next few years, reaching $173 billion by 2020, according to Express Scripts, which manages prescription drug benefits for employers and other clients.

“As scientists unravel the biological underpinnings of cancer cells, new targeted therapies are being developed, but the process is expensive. Avastin, a drug designed to cut off a tumor’s blood supply, can cost $8,000 a month, while a course of treatment with Provenge, a therapeutic vaccine for prostate cancer, is priced at $93,000.”