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Montana HB505: Outlawing assisted suicide

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Image: Flickr, Alex Proimos

Montana lawmakers are considering a controversial bill to outlaw physician-assisted suicide, a decision that opponents say would punish doctors for honoring their dying patients’ wishes. If the bill passes, physicians who provide life-ending drugs could face 10 years in prison and a $50,000 fine.

Introduced by Rep. Krayton Kerns, a Republican, HB505 seeks to clarify “the offense of assisting in suicide,” after a 2009 Montana Supreme Court decision left many confused about the issue.

Known as the Baxter Decision, the court ruled physicians that prescribe life-ending drugs are safe from prosecution, because “nothing in Montana Supreme Court precedent or Montana statutes [indicates] that physician aid in dying is against public policy.” However, the decision did not address whether assisted suicide is a right guaranteed under the state Constitution.

Kerns insists the ruling needs clarification. ”The Baxter Decision did not establish legal assisted suicide in Montana, and this has remained a gray area,” Kerns told the Great Falls Tribune. ”This bill would be a legislative declaration saying it is illegal based on constitution principles.”

According to the bill, “A person who purposely aids or solicits another person to commit suicide, including physician-assisted suicide, commits the offense of aiding or soliciting suicide.” Consent of the patient would not be a defense. However, withholding life-sustaining treatments from terminally ill patients would remain legal.

Critics argue the bill would curtail patients’ end of life choices. Opponent Bonnie Warne of Billings told the Billings Gazette that doctors who provide life-ending drugs to their patients would be unfairly attacked. “Death is inevitable and private. We do not need the state interfering with aid in dying,” she said.

Dan Lourie, from Bozeman, wrote a letter to the Montana Standard arguing that if the bill passes, he would be forced to forfeit his doctor-patient privacy. “My position is that my end-of life choices should be between me and my doctor, and the Montana Supreme Court agrees with me,” he wrote. “It should be my right, and certainly will be my desire, to discuss all of my choices with my doctor — treatment options, my choice to refuse treatment, pursuit of comfort care and assistance in dying.”

Compassion and Choices, a non-profit that serves to expand end of life options, maintains the bill would “roll-back” end of life legislation.

“HB505 goes beyond just prohibiting aid in dying by putting a physician at risk of prosecution for answering a patient’s questions about any of a variety of death hastening options, such as directing deactivation of a cardiac device, directing withdrawal of a ventilator or feeding tube, or provision of palliative sedation; and a spouse, child or friend could be prosecuted for driving the patient to the doctor’s office for the discussion,” a statement posted on their Web site read.

If the bill were to pass, palliative care would still be allowed for terminally ill patients, because palliative care serves to manage pain and ease suffering.

Hearings about the bill began this week.

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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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The stresses of caring for an aged parent

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The stresses of caring for an aged parent

As more than 76 million baby boomers approach retirement age, some have had to become caregivers for parents and sidestep vacation and retirement plans. Advances in medical technology have allowed the elderly to live longer than ever, so now many boomers must adjust.

According to data from the National Alliance for Caregiving, some 66 million Americans are unpaid family caregivers. Two-thirds of those caregivers are female, and most are around 48-years-old. Fourteen percent simultaneously care for their own child.

In 2009, AARP estimated the economic value of their unpaid contributions was approximately $450 billion, as many provide care for more than 40 hours a week.

Rerouted lives

CNN recently published a feature on adults with rerouted lives due to caregiving responsibilities. Karen Jones, 61, a retiree from Virginia Beach, Virginia, is one such individual. ”I never thought I would be doing this,” Jones said. She takes care of her parents, both in their 90s, who live down the street.

“Travel plans now include very expensive trip insurance so I can rush back to take care of them,” she said. “An extended trip to Scotland to visit my husband’s relatives has been put off twice because it’s hard to leave my parents for a month at a time.”

She has no siblings nearby and has had a strained relationship with her parents. Jones said she’s cleaning up her karma and “putting old hurts to right.”

Megan K. McAvoy explained in a new article for The Huffington Post that caring for parents is “a labor of love,” because women must carve out time between getting kids to sports practice, succeeding career-wise and putting dinner on the table.

Some women experience loneliness and isolation caused by the emotions involved in caring for a parent. Seeing a parent ingest high doses of medications, making decisions with siblings, working and financial costs take a serious toll on the caregiver.

According to McAvoy: “The compound physical and emotional impact of caregiving over a lifetime results in a large percentage of women who need care themselves. Yet, nearly half of women ages 75 or older are living alone, compared to less than one-quarter of men. The challenge becomes finding the resources to get care for yourself after you have given it for so long.”

McAvoy, a financial representative, advises families to have early conversations about caregiving and long-term care insurance, although such insurance won’t replace loved ones.

So why do so many children choose to become caregivers? Ellen Breslau, editor-in-chief and senior vice president of Grandparents.com, insists that many children take upon the caregiving role because it offers peace of mind. ”They will naturally feel more comfortable with you than with non-family members, which can impact the caregiving and their well-being.”

“It is also a time to give back to your parents in a way that is unique,” she told CNN. “They raised you and cared for you, and now the cycle has come full circle to a point where you can do the same for them.”

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Hospitals fear Medicare cuts

With “fiscal cliff” negotiations stalling and entitlement cuts and changes pending in Congress, some hospitals fear they’ll be left to fill in gaps left by Medicare cuts. Both President Obama and House Republicans have proposed raising Medicare premiums and savings of at least $400 billion over 10 years.

The New York Times reports: “[T]here is already discussion of cutting special payments to teaching hospitals and small rural hospitals. Lawmakers are also considering reducing payments to hospitals for certain outpatient services that can be performed at lower cost in doctors’ offices,” although final details may not be worked out until next year.

Hospitals already face $155 billion in cuts over a decade as part of the Affordable Care Act, they now must deal with the prospect of losing billions more, the Times reports.

Some hospital executives and provider groups argue large cuts will affect beneficiaries- especially seniors and the poor. “There is no such thing as a cut to a provider that isn’t a cut to a beneficiary,” said Dr. Steven M. Safyer, the chief executive of Montefiore Medical Center.

“It is not particularly honest to say that provider payment reductions won’t affect beneficiaries. They’ll affect staffing, they’ll affect services, they’ll affect access,” Rich Umbdenstock, president of the American Hospital Association, told the Wall Street Journal. ”The cost of care does not go away.”

Illinois’ News-Gazette reports hospital executives already tightening up spending as much as possible to get ready for cuts on the way- either the 2 percent across-the-board sequester or possible debt deal. But they can’t plan for everything, they say.

“It’s hard to know what to be concerned about,” said Craig Sheagren, vice president of finance at Sarah Bush Lincoln Health Center, Mattoon Ill. “It’s kind of like crying, ‘The sky is falling. The sky is falling.’ ”

If no meaningful legislation passes to extend the federal debt limit, Medicare payments to hospitals and doctors will suffer deep cuts anyway, although much less than the current proposals of the President and Speaker Boehner, an estimated $123 billion from 2013 to 2021; doctors will face a 26.5 percent cut in their Medicare fees.

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Obesity and end of life: Weight affects care

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Obesity and end of life: Weight affects care

As the U.S. continues to campaign against what some call “the obesity epidemic,” research shows that weight may affect the quality and costs of end of life care. By 2030, at least 60 percent of Americans in 13 states will be obese, according to the Centers for Disease Control.

Obesity’s effect on economics and health care

The CDC recently gave the nation an “F” for its obesity epidemic. More than 35 percent of adults and some 17 percent of children age 2 to 19 are obese.

Dr. Dean Griffin, Surgery Professor at LSU Health Shreveport, said as those numbers rise, costs of care rise and quality of care diminishes. “The cost goes up dramatically because these patients tend to stay in the hospital longer and because they have more complications, there are additional costs,” he told Louisiana’s KTBS. ”Surgery is much more difficult in patients who are overweight, that makes it very difficult, for example, to gain exposure.”

CDC
CDC

The CDC analysis found combined medical costs associated with treating preventable obesity-related diseases will increase between $48 billion and $66 billion per year in the U.S. by 2030. The loss in economic productivity could be as much as $580 billion annually by 2030.

Obese struggle with transitions from hospitals

Hospital case managers, nursing home and home care agency directors report patient size impacts transitions from hospital settings, according to a study by East Carolina University’s College of Nursing. This study is one of the few done on the issue.

“The increase in obese patients within the hospitalized patient population has become a challenge for nurses. Providing care for obese patients necessitates the use of assistive equipment and requires more staff members and more time for nursing procedures,” researchers explain.

Even home care is sometimes deemed inadequate for an obese patient due to lack of caregiver support or inappropriate facilities. Nursing home placement is often difficult for the obese due to the inability or unwillingness of some facilities to accommodate them. Patients can become “stranded in the hospital,” the report states, and “experience subsequent deterioration of vigor as well as increase in cost.”

Similarly, a recent study published in the Journal of Palliative Medicine determined obesity creates significant challenges to palliative medicine, leading to premature death and poor quality of life. U.K. researchers found privacy, handling and transfer to hospice more difficult for the obese.

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TEDMED takes on caregiving

The stress and strife many caregivers face was the topic of  TEDMED’s latest Great Challenge series. The streaming video featured health care professionals who pondered what should be done to manage end of life care options and address caregiver needs.

There are 44 million full and part-time caregivers in the U.S. responding to an aging baby boomer population that the health care system isn’t equipped to handle. Costs continue to rise, and in 2010, Medicare paid $55 billion for doctor and hospital bills during the last two months of patients’ lives.

“We all know what the issues we’re dealing with are: the aging population, the health care system not being in a position to take care of everyone, people getting busier and living further away from other family members and a real need for better coordination of care in the marketplace.” said Alan Blaustein, the founder of CarePlanners, an organization which provides educational support to members. “The real issue at hand is that there’s nobody in the system who’s in any position to properly care-give or coordinate care for any member of your family,” so the responsibilities rely on family.

Education was a common theme throughout the discussion directed at both medical students and family caregivers. Blaustein insists students learn about caregiving, even though hospital settings don’t allow time for much talk with those managing the care.

Cheri Lattimer, director of the National Transitions of Care Coalition, offered practical wisdom for those just beginning the implementation of educational support programs for those caring for family.

Lattimer proposed that health professionals talk with “health literacy” to those looking for education and just starting to care for those with dementia. “We are talking in the health literacy that patients and consumers can understand. As providers of care we often go into medical terminology which can be difficult to understand.”

She also recommends educational programs with multiple individuals who are dealing with similar struggles- so they can talk to each other.

More and more young people are now taking on caregiving roles. “There are far more children who provide caregiving than we know. It has an impact on them, their schoolwork and their own emotional situations,” said Suzanne Geffen Mintz, the co-founder of the National Family Caregivers Association.

“Other countries have recognized this problem and developed youth-centered programs that allows kids to be kids. There is vast experience elsewhere that could be adapted here,” said Carol Levine, director of the Families and Health Care Project. Young adults, 18 to 25-years-old, are also overlooked and increasingly involved in family caregiving, she said. There is diversity in family caregiving, and varied caregivers have varied needs.

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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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Addressing the needs of ethnically diverse caregivers

Addressing the needs of racially and ethnically diverse family caregivers can help reduce the number of unnecessary hospitalizations and improve transitions between care settings, according to new findings by AARP. Researchers Susan C. Reinhard and Rita Choula analyzed qualitative data on Hispanic and African American caregivers in Meeting the Needs of Diverse Family Caregivers.

According to the AARP Public Policy Institute, one in ten caregivers in the U.S. in 2009 were Hispanic, and 11 percent were African American.

An African American male family caregiver said he was not taken seriously in the hospital because he was dressed in jeans and a baseball cap—like he was from the ‘hood.’

Hispanics told researchers that they always knew they would end up as family caregivers- a cultural tradition. “A number of Hispanic family caregivers said they started caregiving when they were very young. Many, particularly female caregivers, have had years of experience caring for their grandparents, parents, aunts, and uncles,” researchers write. Experience, however, does not make their job any easier, especially when many of the younger family caregivers work and have children of their own.

Language continues to be a barrier to effective communication in hospitals between caregivers and doctors. The researchers note, “In many instances the health care professional delegated responsibility for translating to the family caregiver, who might not have a good understanding of the information being translated in the first place.”

African American caregivers complained of feeling invisible in hospital settings. “Many felt ignored by the hospital staff. Some said doctors, nurses, and social workers often left them out of discussions about their family members, and it was sometimes difficult to get their questions answered,” the researchers write. It is imperative that caregivers remain informed in order to relate information to patients, who are often confused.

The lack of caregiver training can also harm their patients. “For example, family caregivers said they often did not receive sufficient training in administering injections,” the researchers found. “They also reported that they were not formally trained in other areas, such as how to move their family member from the bed to the bathroom, how to change an adult diaper, or how to get the care recipient to walk.”

The study also discovered that racial stereotyping in hospitals arose with disturbing frequency. Sometimes, African American caregivers felt like they had to prove themselves to doctors and hospital staff. “An African American male family caregiver said he was not taken seriously in the hospital because he was dressed in jeans and a baseball cap—”like he was from the ‘hood,’ ” according to the report.

The study also found that as part of the “new normal,” caregivers provide unpaid contributions of more than 450 billion dollars annually. “Family caregivers are assuming ever- increasing responsibilities for managing health care at a time when the older adult population in the United States is becoming more racially and ethnically diverse,” the researchers write. These responsibilities can include social work, nursing care, and some caregivers even act as patient navigators in hospital settings.

Many caregivers reported feeling unappreciated and ignored. “Despite deep personal and economic investments in the care of their family members, family caregivers report that they seem largely invisible to those who might be able to help them feel more respected and confident in providing care” the researchers write. “And, they say, rarely does anyone ask them how they are doing, what their needs are, and how those needs might be addressed.”

Similarly, The American Psychological Association found that ”Factors such as socio-economic status, familial interdependence, level of acculturation, immigration status, and fear of stigma in response to a disease or physical disability may influence minority group members’ experiences of caregiving.” The association concludes that healthcare professionals need to consider these differences.

Healthcare professionals must work to eliminate any tendency towards racial stereotyping, the APA writes, because stereotypes can lead to errors in judgment about minority groups.

“[B]ecause families of color are often stereotyped as being close-knit and supportive of their kin, social service agencies may not take the time to assess the actual needs of this population. This assumption may lead to less allocation of resources, manpower, and finances for outreach to those communities, which in turn, may help to perpetuate the misconception that they underutilize social services because they are taken care of by their own families,” the APA writes.

AARP researchers maintain that minority caregivers want to learn and will take advantage of available aid. “These family caregivers say they want resources to help them better care for their family members, not someone else to perform the tasks for them. They want more knowledge and confidence, and backup if they need more training and information,” they report concludes. They recommend a 24-hour hotline for caregiving support and training sessions to help family caregivers deliver better care.

Learn more from the Life Matters Media Newswire.

Language can be a barrier to end of life care

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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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How much is three months of life worth?

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.”

Learn more about the cost of cancer drugs at NPR.

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