End Of Life Care For Children Is Different

End Of Life Care For Children Is Different

Posted on Friday, February 6th, 2015 at 8:23 am by lifemediamatters

End of life care for terminally ill children differs significantly from therapies designed for adults nearing death, said a palliative care physician and bioethicist this week at the University of Chicago’s MacLean Center for Clinical Medical Ethics. Each year in the U.S., thousands of seriously ill children continue with curative therapies while enrolled in hospice or palliative medicine programs, even when cure is unlikely.

“The pattern of death is pretty different from adult patients,” said Dr. Joel Frader, medical director of the Bridges Palliative Care Program at Lurie Children’s Hospital. “There is a very low density of dying children, even in places like Chicago. As a result, there are very few expert pediatric palliative care providers.”

Palliative medicine is designed to alleviate symptoms of disease and curative treatments.

Dr. Joel Frader

Dr. Joel Frader

Out of the nearly three million U.S. deaths each year, only 55 thousand involve individuals under 18. More than 50 percent of child deaths are a result of catastrophic illness or rapid trauma, such as congenital abnormalities, homicides and accidents. Most non-acute deaths that require prolonged care involve complications associated with cancer or neuromuscular diseases.

Unlike adults, most terminally ill children have healthy cardiovascular systems and lungs until their final moments. Clinicians can offer pediatric patients simpler treatments, such as blood platelets or nutritional supplements, while still ensuring good quality of life until the final days or hours.

It is not unusual, Frader said, to care for a child “who is actively playing and happy until the last couple of days of his or her life. That’s pretty different from what it looks like in adult medicine.”

However, it is also much more difficult to predict a child’s life-expectancy and enroll him or her in one of the nation’s few pediatric palliative care or hospice programs.

“A lot of what we do is technically more difficult, or at the very least, unfamiliar to people who care for dying adult patients,” he added. “Medical directors in hospices who are geriatricians or internists or oncologists really don’t want anything to do with caring for children, even if their organization is the only one in the limited geographic area that provides in-home end of life services. It presents serious barriers, and our team spends an awful lot of time getting hospices to accept the care of a patient who lives outside of Chicago.”

Hospice care is designed to help comfort terminally ill patients in their last months of life. The goal is not cure, but pain and symptom management.

MACLEANThe Medicare Hospice Benefit provided to adults with a life expectancy of six months or less requires that patients stop receiving curative treatments, such as chemotherapy, blood transfusions and radiation. But federal law mandates that terminally ill children receive “concurrent care” consisting of both comfort and curative treatments. Pediatric programs are far less likely to be reimbursed.

While all palliative and hospice care programs are interdisciplinary, pediatric care typically involves music, art and animals to relax patients.

But many clinicians face depression, because they often provide care and emotional support to parents, siblings and even classmates. It can be frustrating to care for teens unable to make their own decisions, Frader offered, and difficult helping parents or guardians explain disease to young children.

“The emotional toll represents a psychological burden on the staff, and it’s not easy stuff to do,” he added. “There is a high turnover rate.”

Talking About Death

Posted on Thursday, January 1st, 2015 at 6:16 pm by lifemediamatters

Medical Societies Spearhead End Of Life Care


Randi Belisomo

This piece was first published in Chicago Medicine (page 18-19). LMM President Randi Belisomo is a contributor.

Bernard “Bud” Hammes, PhD, has spent a lot of time on the phone lately. The balding, spectacled but tireless medical ethicist for La Crosse, Wisconsin, Gundersen Health System has been enthusiastically fielding calls from medical societies, health executives and policymakers nationwide, wondering if they can turn their system or town into one like his own—dubbed in recent headlines as “The Town that Talks About Death.”

Since 1991, Dr. Hammes has been refining his Respecting Choices program, engaging patients in informed discussions about end of life decision-making. More than two decades later, he is witnessing tremendous benefits. Ninety-six percent of those who die in La Crosse have advance directives; nationally only 30% of adults do. “It’s a part of the social fabric here,” Dr. Hammes said of La Crosse, where studies show Respecting Choices has led to the high prevalence in honoring patient preferences, reduced use of hospital services, and no change in mean length of life.

The program is no silver bullet, he acknowledges, calling it instead, “a central tool in the complex tool kit for improvement of health systems and the care of patients.” However, that “central tool” for care may be more aptly described as an axe when applied to health spending. According to the Dartmouth Atlas of Health Care, La Crosse spends less on patients at the end of life than any city nationwide. A finding like that is something health leaders notice, since the Affordable Care Act encourages simultaneous spending reduction and quality improvement.

Dr. Bernard Hammes

Dr. Bernard Hammes

“We used to shy away from cost questions,” Dr. Hammes said. “We are certainly more comfortable saying something improves care. That it saves money is a blessing and unexpected event, and it gives us the ability to carry out this work.”

It turns out that when asked, most patients opt against high-intensity end-of-life care. But more than a quarter of Medicare spending is spent on just that. The particulars of patient preferences aren’t what matters to Dr. Hammes. What matters is that patients are asked what those preferences are, and that they are honored.

“Chaplains, social workers and nurses are among those being trained within health systems to guide patients in determining what they value at the end of life.”

Now, his work is being replicated worldwide, as Respecting Choices programs are popping up across the globe—in Australia and Singapore—and as close to home as Minnesota. A common denomi- nator underlying these initiatives is leadership from local medical societies, organizations Dr. Hammes calls “excellently positioned” to empha- size advance care planning, so patients may speak up and spell out the care they want. The work costs time and money, Dr. Hammes warns. “We do it, because it’s the right thing to do.”

The Respecting Choices Program At A Glance

Dr. Hammes’ Respecting Choices paradigm trains non-physician facilitators to guide patients in advance care planning within First Steps, Next Steps and Last Steps programs staged to individuals’ health. “The program is physician-friendly,” said John Ropp, MD, a family physician on the board of the South Carolina Medical Association, which is planning First Steps implementation next year. “It makes sense from a clinician standpoint what we’re trying to accomplish, but it takes more than doctors to accomplish meaningful things in the community.”

Chaplains, social workers and nurses are among those being trained within health systems to guide patients in determining what they value at the end of life. Time-strapped physicians refer patients of all ages and stages of health to facilitators to explore fears and experiences as witnesses to loved ones’ deaths. Religious beliefs shaping preferences are also unraveled, and patients choose trusted surrogates to execute decision-making in the event they cannot.

“It’s a way for patients to develop their own insight about why end of life planning is important, figure out what they want, and understand what their values, goals and preferences are based on other experiences,” Dr. Hammes said. Patients typically leave discussions with advance directives completed; in La Crosse, directives are stored in medical records shared among the city’s two health systems.

Why Medical Societies Are Suited To Lead The Charge

Though Respecting Choices has taken hold in northeast Florida with hospice leadership, Dr. Hammes says medical societies are ideally positioned for sponsorship. “They stay out of provider competition,” Dr. Hammes said. “They represent physicians at all institutions and have clear leadership.”

Leadership was something the Twin Cities Medical Society was after in 2008, while seek- ing a project to make its own. End-of-life care needed improvement, members agreed, when they voted to attempt a replication of La Crosse’s success. They dubbed the initiative “Honoring Choices Minnesota.”

“It’s been a blur since,” said Sue Schettle, Twin Cities Medical Society CEO. Four local executives contributed $25,000 each. The medical society did too. Seventeen pilot sites formed between 2010 and 2013, and facilitators now work in clinics, churches and community centers. “It’s gone viral,” Schettle said.

Though Respecting Choices is Wisconsin-born, Minnesotan success prompted the Wisconsin Medical Society towards implementation. “Members wanted a project benefitting everyone, and this had obvious broad-based benefit,” said John Maycroft, director of initiatives.

“Honoring Choices Wisconsin” launched last year in six systems from Madison to Milwaukee. Though insurers contribute to the $350,000 annual budget, members know they are positioned to
lead. “The message from physicians is important,” Maycroft said. “If it came from government or insurers, it wouldn’t be as strong.”

The work isn’t easy. Success requires coordination ensuring conversations are offered, sched- uled, conducted and recorded. Three thousand have been facilitated so far. “We found incredible pent up energy,” Maycroft said. “People have come out of the woodwork to help.”

Energy was also apparent among Richmond Academy of Medicine members, who were concerned about late hospice referrals. They agreed something similar to “Honoring Choices Minnesota” might work in Virginia; early intervention, said director Deborah Love, was more “palatable” than the current approach—one members believed amounted to “waiting until crises develop.”

Thirty facilitators from three systems begin First Steps training this September. Those organizations contributed financially, each establishing three pilot sites. Community outreach begins next year, when facilitators are ready to respond.

In South Carolina, implementation of the Physician Orders for Scope of Treatment (POST) project exposed what state medical association members believed was lacking: earlier advance care planning. POST, similar to Illinois POLST, is intended for patients expected to die within one year. “There’s a lot more to it,” Dr. Ropp said. Members plan a First Steps project across five health systems.

Dr. Ropp expects that typically competitive systems will be quick to collaborate. “Competition works both ways,” he said. “It breaks down markets, but on good projects, it serves as positive peer pressure.”

South Carolina Medical Association leadership, however, is essential, Dr. Robb says. “Insurers or state agencies would be seen as attempting to save money by limiting care,” he said. “Being physician- led is a moral, ethical high road.”

Is Chicago Next?

Chicago’s large, diverse population and numerous health systems, end of life experts say, underscore the need for an advance care planning initiative; however, those factors may present challenges so far unaddressed by Respecting Choices programs. “In Chicago, we are densely populated with health systems that don’t communicate with each other,” said Julie Goldstein, MD, an Advocate Illinois Masonic palliative specialist and Chicago End-of-Life Care Coalition founder. “We need a common language for patients to communicate their wishes across the spectrum of care.” With a six-hour online module and one full-day class, Advocate Health Care has trained 130 case managers in Respecting Choices First Steps facilitation.

Achieving buy-in from Chicago’s health systems may be difficult, but Dr. Goldstein says it is pos- sible. “Many health care institutions are coalescing into larger systems, and that should make it easier to collaborate and coordinate for uniform practice,” she said.

Such a citywide initiative, however, would be complex, requiring culturally sensitive outreach. Much work would need to be community-based, setting a model precedent across a diverse municipality.

NorthShore University palliative specialist Mike Marschke, MD, is attempting one such model within his own system. Nine months ago, he designed advance care planning pilot projects within outpatient oncology and cardiology clinics. In September, 800 physicians and 2,000 nurses, chaplains and social workers received advance care planning facilitation training via 20-minute online videos, produced for roughly $4,000.

“Chicago’s large, diverse population and numerous health systems, end
of life experts say, underscore the need for an advance care planning initiative.”

His short-term goal is for NorthShore’s seriously ill patients to engage in discussions about care goals. In first addressing the most vulnerable patients’ needs, Dr. Marschke acknowledges he starts with the “lowest lying fruit.” Patients will be asked to assign a power of attorney for health care. Documentation of discussions and directives will be recorded in EPIC; the electronic medical record with a new end-of-life care navigator was tested within NorthShore this year.

“You need to change culture,” Dr. Marschke said. “Culture can only change from within.” He maintains Respecting Choices is unnecessary; time, effort and leadership are what’s required. “Hospitals have to figure out how advance care planning can work for them,” Dr. Marschke said. “You shouldn’t have outside agencies telling them how to do it.” Where Drs. Marschke and Goldstein agree, however, is that such work must be done.

“We are at a tipping point in this region, a time of crisis in health care and resources,” Dr. Goldstein said. “It’s time to realign them with patients at the center.”

Massachusetts Doctors Must Provide End Of Life Counseling

Posted on Tuesday, December 23rd, 2014 at 9:45 am by lifemediamatters

Courtesy WikiMedia Commons

Courtesy WikiMedia Commons

Physicians in Massachusetts are now required to offer end of life counseling to their terminally ill patients nearing death, according to new regulations taking effect. It is the first such law in the nation.

On December 19, Massachusetts Secretary for Health and Human Services John Polanowicz published regulations designed to help dying patients make their end of life care wishes known. Practitioners are to identify patients with a life expectancy of six months or less and ask if they want to discuss care options or complete advance health care directives.

The state created a sample brochure written in nine languages to help familiarize patients with hospice care, palliative medicine and advance directives, including the Medical Orders for Life-Sustaining Treatment (MOLST) form.

“The Department of Public Health is committed to ensuring that patients with serious advancing illness receive information about the full range of options for their care, so that they and/or their advocates may make informed decisions about their health care choices,” a statement sent to state medical centers and long-term care facilities.

DPH could not be reached for comment.

The requirement stems from a 2012 law, and the state will review hospitals’ compliance. Facilities are required to develop policies to help identify appropriate patients; compliance could become an issue during a medical center’s licensing review.

MOLST is a voluntary medical order allowing patients in their last year of life to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. It is based on the National POLST (Physicians Orders For Life Sustaining Treatment) Paradigm.

These regulations come in light of a controversial decision by the Centers for Medicare & Medicaid Services to continue in 2015 its policy of not reimbursing medical practitioners for end of life conversations with seriously ill patients.

In 2010, similar proposals were dropped from the Affordable Care Act after political opponents associated advance care planning sessions with “death panels,” a widely discredited accusation.

Securing Hospice Care: An Interview With Dr. Kathleen Unroe

Posted on Thursday, December 18th, 2014 at 9:55 am by lifemediamatters

Nursing home patients have longer hospice stays when compared to similar individuals receiving care at home or in their local community, according to a new study published in the Journal of General Internal Medicine. Nursing home patients also tend to be older, less financially secure and female.

Researchers, led by Dr. Kathleen Unroe, a Regenstrief Institute investigator and Indiana University Center for Aging Research scientist, determined that nursing home hospice patients are more likely to receive aid from both Medicare and Medicaid and suffer from dementia. Nearly 3,800 patients were surveyed.

The study, which also details how hospice patients move-in-and-out of care settings, aims to provide policymakers with guidance for best practices. One-third of U.S. hospice patients live in nursing homes.

Unroe spoke with Life Matters Media about the benefits of hospice care, the importance of advance health care planning and Medicare spending.

What inspired you to study hospice care in nursing homes?

I’m a nursing home physician, and I care for patients in a facility that specializes in dementia. I’m interested in understanding more about who in nursing homes uses hospice, who doesn’t and how it impacts the quality of end of life care.

I’m also interested in health policy, and there are also some tricky things about how the hospice benefit is structured. For example, if a patient is hospitalized and clearly near the end of life and hospice eligible, often he or she will still go to a nursing home on a skilled nursing benefit, because of the way that benefit is paid.

In this particular data set, I have linked Medicare and Medicaid claims, as well as minimum data set assessments on nursing home patients. It’s a nice, rich data set to follow the experience of patients.

Why are nursing home hospice patients older and less financially secure?

Nursing home hospice patients are reflective of the overall nursing home population, which tends to be a very elderly population, which also tends to be female. Nursing home days are predominately paid for by Medicaid.

Being in a nursing home is so expensive that most people will become impoverished to the point where they become eligible for Medicaid in order to pay for their care. Medicare does not pay for long-term care, so a person has to pay for nursing home expenses out-of-pocket or have long-term care insurance pay until Medicaid eligibility. Many people exhaust their resources to pay for 24-hour custodial care.

Dr. Kathleen Unroe

Dr. Kathleen Unroe

Nationally, 40 percent of Medicare patients die with hospice care. Your thoughts?

Hospice is only a few decades old, and it is now reaching 40 percent of all people. I think that when you consider how many people have short lengths of stay – in my study, 27 percent had hospice for a week or less – then yes, the benefit is underutilized.

Late referrals are especially problematic, because people are not getting enough time to truly benefit from the services hospice provides. Why is it only 40 percent, and why are so many people of that 40 percent on hospice for such a short time? I think there are a number of reasons.

In the nursing home population, prognosis is especially difficult. There are a lot of people with advanced dementia as a primary cause of death or suffer from a number of medical problems. It is not as clear-cut a trajectory as terminal cancer.

So, it is difficult to know how much time someone has left, and it complicates referral to hospice, because the hospice benefit has the six-month eligibility criteria. Two physicians need to confirm that your prognosis is six months or less. People wait.

There are also some people who will never accept hospice as it is currently structured. Hospice replaces your Medicare Part A benefit, so you have to forego curative therapy. Some people will never seek it.

How can physicians and nurses encourage more seriously ill patients to opt for hospice care earlier?

I think the heart of it is advance care planning. In Indiana, we just launched a POST program, Physician Orders for Scope of Treatment, which is based on the national POLST model.

I think POST makes a big difference, because if nursing homes build into their policies and procedures- or even just their culture- a goal of addressing these issues in a proactive way, they can better identify people whose goals-of-care are comfort focused.

Advance care planning helps get end of life conversations started earlier, and even helps build relationships between hospices and nursing homes. But advance care planning is so often missed. Every nursing home patient deserves an hour-long conversation about prognosis, about goals-of-care, about expected symptoms and complications from disease.

Medicare declined to reimburse physicians for end of life conversations in 2015, would that have helped to encourage advance care planning?

Time and reimbursement are issues, but I have also come to the belief that it doesn’t have to be the physician to lead these conversations. Yes, physicians must be involved, and I don’t want to absolve us of our incredibly important role in these conversations, but don’t leave it all up to us.

I think that social workers and nurses that have received additional training in having these conversations can lead, and then a physician can be involved to answer specific questions and sign orders. We need to encourage our partners to create time and space to have these conversations that should not be rushed. I don’t know if doctors can ever have these conversations with every patient, or at least not be the only person involved.

Yes, providers should be reimbursed for doing this important part of our job.

Does A Just Society Use the “R” Word?

Posted on Saturday, December 13th, 2014 at 10:24 am by lifemediamatters

Courtesy WikiMedia Commons

Courtesy WikiMedia Commons

U.S. healthcare spending is poised to grow at an average of 5.7 percent annually over the next decade, stretching government budgets with an upswing in the economy, an aging population and expanded coverage under the Affordable Care Act. By 2023, healthcare spending will account for nearly a fifth of annual GDP, up from 17 percent in 2012.

Justice requires a percentage of GDP be spent on healthcare and a clear designation of covered basic services. This approach invokes the “R” word, the third rail of all discussions about the future of health spending. The principle of distributive justice, one of the four tenets of medical ethics, requires equal treatment of all patients and equal allocation of resources. Fairness not only permits, but requires, a health system to ration -not exclude- effective medical services that some may need if it is to serve all.

We are a collective moral society. There is no reason to exclude certain members of this society from access to basic medical services due to one’s ability to pay. The cardinal merit of rationing is that it guarantees that spending for all members of society will remain within the limit justice prescribes. The trajectory for cradle-to-grave healthcare places an unsustainable burden on this country’s fiscal health. Since healthcare is not the only factor determining the health of an individual or a population, it is our moral responsibility to set limits and allow other determinants of health to be funded.

Social contract theorist John Rawls argues the principles of justice are made in agreement with those entering into a contract with us to form a society. He further argues there must be “fair equality of opportunity” for its members. Rawls’ definition of what constitutes a just society is reached under a “veil of ignorance.” This veil pre-supposes that “no one knows his place in society, his class position or social status; nor does he know his fortune in the distribution of natural assets and abilities, his intelligence and strength, and the like.” Those responsible for establishing the framework for medical services would do so not knowing their ultimate personal impact, allowing difficult and equitable policies to be formulated.

Even though Rawls was not specifically considering healthcare, his theory fits. Without good health, fair equality of opportunity is compromised. If we consider ourselves a just society, we cannot exclude individuals from basic health services that strip their chances for productive lives. Without a system of rationing care, members will be excluded. And, yes, the elephant in the room is the scarcity of money.

The Independent Payment Advisory Board (IPAB), the fifteen-member panel established by the ACA to address per capita growth in Medicare spending, has deteriorated into a conversation instead of a working body. This Board became the “death panel” of healthcare reform, slipping into a coma due to the outcry from medical organizations and Congress alike.

But, realistically, “all talk and no action” must be replaced by readiness to act. We must come to grips with the competing needs for a larger slice of the fiscal pie. It cannot  be all about healthcare. Overt rationing is inevitable. However, the question remains: how do we best implement the process?

To provide basic healthcare services to everyone, a shift in the allocation of financial resources is necessary. Consensus regarding what constitutes basic care and how that cost fits within a fixed budget is required. A few examples illustrate how difficult the rationing discussion becomes when we consider where our healthcare dollars are spent and what changes may be assigned to free up resources for all.

  • In 2011, Medicare spending reached close to $554 billion, amounting to 21 percent of total health expenditures. Of that $554 billion, Medicare spent 28 percent -or about $170 billion- on patients’ last six months of life.
  • Dialysis, once a short-term bridge to transplant, has become chronic treatment for end stage renal disease and comes with an annual price tag of $50 billion, funded by Medicare and Medicaid. More than 100,000 candidates await kidney transplants on what has been called the “waiting list to die.”
  • Nearly 13% of all babies in the U.S. are born prematurely, a 20% increase since 1990. A 2006 National Academy of Sciences report found that the 550,000 preemies born each year run up about $26 billion in annual costs, primarily related to NICU care. Factor in the cost of treating the possible lifelong disabilities and the years of lost productivity among caregivers, and the real tab may top $50 billion each year.
  • Obesity in 2006 was responsible for close to 10 percent of medical costs, nearly $86 billion a year. Spending on obesity-related conditions accounted for an estimated 8.5 percent of Medicare spending, 11.8 percent of Medicaid spending and 12.9 percent of private-payer spending. By one estimate, the U.S. spent $190 billion on obesity-related health care expenses in 2005.

The list is endless, and our appetite is insatiable. From what bucket do we start to re-allocate funds to open the spigot for basic healthcare for all? The price of life matters, and how that bill is paid along the full continuum is open for debate.

Healthcare spending is not a bottomless pit. Where will the sacrifices be made for the good of society? If we adopt the veil of ignorance in setting public policy, we should arrive at a fair, albeit difficult, policy for rationing health services in a just society. Or is that just too hard for a country that repeatedly asks physicians to “do everything?”