Framing the Issue

  1. Nearly 90 million Americans live with serious and life-threatening illness, a figure predicted to almost double over the next 25 years with the aging of baby boomers.
  2. Today, 7 out of 10 Americans die from chronic disease.
  3. According to a 2010 study in The New England Journal of Medicine, patients receiving early palliative care experience less depression, improved quality of life and lived 2.7 months longer.
  4. Approximately 68 percent of Medicare costs are related to people with four or more chronic conditions — the typical palliative care patient.
  5. If palliative care is fully implemented in the nation's hospitals, total savings could reach $6 billion annually.
  6. The number of hospital palliative care teams has doubled over the last six years, with nearly 1,700 hospitals staffing teams.

As hospitals grapple with health reform initiatives and new reimbursement models, a quiet revolution in advanced illness management has taken root within their walls.

Today more than 90 percent of U.S. acute care hospitals with 200 beds or more staff palliative care teams, according to the Center to Advance Palliative Care.

A March 2013 CAPC report found that palliative care teams in U.S. hospitals with more than 50 beds have proliferated dramatically since 2000, from 658 hospitals (24.5 percent) to 1,692 (67 percent). "If current trends continue, by 2014, eight in 10 U.S. hospitals with 50 or more beds will have a palliative care program," the report found.

Palliative care is specialized medical care for people with serious, but not necessarily terminal, illness. Multidisciplinary palliative care teams offer symptom treatment and relief of the pain and stress of illness to improve quality of life. Teams usually comprise palliative care specialist physicians, nurses, social workers, case managers and chaplains.

Nearly 90 million Americans live with serious and life-threatening illness, a figure predicted to almost double over the next 25 years as baby boomers continue to age.

The growth in palliative care, advance care planning and hospice services is driven by frustration with the uneven quality of end-of-life care, but also by its growing share of health care costs.

According to a 2012 Agency for Healthcare Research and Quality report, 1 percent of the population accounts for 21.8 percent of total U.S. health care expenditures and 5 percent of the population accounts for nearly 50 percent of spending. A disproportionately large percentage of resources are spent on patient care in the last two years of life, much of it unwanted by patients, unnecessary and ineffectual in prolonging life.

Policymakers say it's nearly impossible to bend the health system's cost curve without tackling end-of-life care. Despite the political maelstrom resulting from the politically motivated brouhaha over "death panels" in 2010, advocacy and health care organizations have revived discussions to improve the cost, quality and outcomes of the care Americans receive in their final years.

Last year, the Joint Commission certified its first-ever hospital palliative care programs and the American Hospital Association issued two reports on advanced illness management strategies, encouraging hospitals to improve care for patients with serious and terminal illness. The Institute of Medicine formed the Committee on Transforming End-of-Life Care and expects to issue a report in 2014.

A groundswell might be overstating it, but awareness about end-of-life care is spiking.

Federal response

In response to the growing public interest, several bills have been introduced in Congress to improve advance care planning and palliative care.

For instance, Rep. Earl Blumenauer (D-Ore.) has garnered bipartisan support for his Personalize Your Care Act, which "makes sure that patients get the treatment they want for themselves and their loved ones and that they know what they face and are given the tools they need."

Dick Woodruff, vice president of federal relations for the American Cancer Society and its advocacy arm, the Cancer Action Network, says the network is backing two other bills. One is aimed at increasing the number of permanent faculty members who are teaching palliative care in accredited medical schools, while the other funds education and research into palliative care and improves public outreach.

Woodruff says shortages of trained physicians and nurses, a lack of research into best practices and a misalignment of payment incentives have hampered the growth of palliative and advanced illness care. "We intend to go to the Hill and lobby for specialized payment code increases that reflect the real value of palliative care consultations and include them in payment bundles," he vows.

Also on the federal level, the Centers for Medicare & Medicaid Services have launched a number of demonstration programs to improve care for the chronically and terminally ill. The Independence at Home Demonstration project offers primary care services in patients' homes to those with chronic illnesses to learn whether home-based care can reduce hospitalizations, lead to better outcomes and lower Medicare costs. CMS also is exploring evidence-based interventions to reduce avoidable hospitalizations among nursing home residents and is launching pilots to improve care for the 9 million vulnerable Americans who are dually eligible for Medicare and Medicaid.

Docs' generation gap and other obstacles

Diane Meier, M.D., a geriatrician and CAPC director, says the movement is driven by front-line clinical teams recognizing and responding to patient needs. Meier, who also directs the Hertzberg Palliative Care Institute at New York's Mount Sinai School of Medicine, says there is growing evidence that palliative care makes patients feel better and live longer while it also saves the health care system money. "As a consequence, they have fewer emergency room and hospital visits, which cut costs," she says. "Most hospital CEOs are aware of this and that's why the number of hospitals staffing palliative care teams has doubled within the last five years."

Meier says public outreach and patient and physician awareness still lag. "Most families of seriously ill and terminal patients are never told about palliative care, either because their family doctors don't know much about it or feel they have failed their patients," she says. "There is a decided generational gap in familiarity and comfort with palliative care. Many doctors of a certain age don't know what it is. We need to standardize access based on need, not a throw of the medical dice."

Meier cites two others priorities: Shift the focus of palliative care from the hospital to the home or other community settings, "where most people with serious illness live," and to make sure services are adequately covered.

While insurers cover the physician and nurse practitioner components of palliative care, "what doesn't get covered now are the rest of the services," she says. "It takes a team to deliver high-quality palliative care, and the chaplains, nurses and social worker can't bill."

Gundersen Health System's Respecting Choices program has become an internationally accepted model for advance care planning. By integrating planning discussions throughout the health system, the LaCrosse, Wis., organization provides the care that terminally ill patients want while reducing hospital readmissions, length of stay and average reimbursement per deceased patient.

A 2007 Dartmouth Atlas study found Gundersen's average reimbursement per patient in the last 24 months of life was $18,359, nearly $7,500 less than the U.S. hospital average of $25,860. Its hospital days per deceased patient in the last two years of life averaged 13.5 days, nearly half the U.S. average of 23.5 days.

Respecting Choices Director Bernard Hammes says saving money is not Gundersen's primary motivation. "The evidence suggests nobody wishes to die spending their last days and weeks hooked up to machines with needles probing their bodies. When you can cut out unwanted tests, treatments and hospital days, you do something good for the patient and avoid use of expensive resources that have no benefit. You're not harming patients, you're empowering them."

How some hospitals make big strides

The AHA Committee on Performance Improvement made advanced illness management its priority in 2012, offering a roadmap to hospitals for improving care through two widely disseminated reports. The reports found that hospitals around the country are applying advanced illness management programs throughout the continuum of care.

For example, Mercy Medical Center in Cedar Rapids, Iowa, has reduced readmission rates by implementing its variation on the Physician Orders for Life-Sustaining Treatment program, an advance directive tool that travels with patients and allows them to share their health care wishes with hospitals, physicians, nursing homes and home health agency providers. Kaiser Permanente, which has tested AIM models in randomized clinical trials, is developing medical homes for the most complex and seriously ill patients.

Some hospitals offer 24-hour telephone hotlines and telemedicine consults. Others concentrate on treating patients at home, providing alternatives to emergency department and inpatient hospital care. One system applies evidence-based, disease-specific programs that include family and caregiver education and telemanagement.

AHA board member James Diegel, who chaired the Committee on Performance Improvement, says the reports offer real-life peer examples and learning pathways for hospitals. "We believe there are significant opportunities to help organizations focus and coordinate care for a segment of the patient population whose care hasn't been well-coordinated," says Diegel, president and CEO of St. Charles Health System in Bend, Ore.

The reports explore access to services, workforce development and creating awareness for patients and their families for various AIM services. AIM includes all components of traditional end-of-life care: advance directives, palliative care and hospice, Diegel says, adding, "But it's even broader, intervening in earlier stages of chronic illness before it becomes more serious."

Laura Mavity, M.D., medical director of St. Charles' AIM team, says when she arrived in central Oregon in 2009, there was no inpatient palliative care program. "We started at our 261-bed St. Charles Medical Center and it grew organically to our other hospitals and has evolved very dramatically with help from the AHA and the Center to Advance Palliative Care," Mavity says. "Concurrently, it has also spread to outpatient settings. Our palliative care doctors see patients in skilled nursing facilities and in their own homes." Mavity says the program has grown from 222 AIM consults in 2010 to an expected 600 this year.

St. Charles focused first on readmissions. "In 2012, we achieved a readmission rate of 4.4 percent for our consults when our expected rate was more than 10 percent," says Katie Hartley, R.N., a palliative care nurse and program administrator. "We accomplished this through improved transitions of care, earlier use of hospice, both inpatient and outpatient, and a robust palliative care practice.

Nursing and medical schools need to incorporate the tenets of palliative care and AIM into their curricula, Hartley says.]

A value proposition

Health reform is spurring the current rapid pace of change, Diegel says. "I don't think the market or political forces were strong enough in previous years to get our act together. Today we are saying we need to transform our health care system and that has led to this effort in AIM. We are moving away from a fee-for-service model to one of more bundled payments for care and global payments for care of an entire population set."

Integrating AIM across hospital services "will help us bring value to those who purchase our services, whether government or private insurers or employers and individuals," Diegel says. "AIM plays nicely into the concept of value-based purchasing."

Ira Byock, M.D., director of palliative care for the Dartmouth-Hitchcock Medical Center in Lebanon, N.H., says hospitals increasingly recognize that the best care is highly personalized and tends to the emotional, spiritual and physical well-being of patients and their families. "The growth of palliative care has been fueled by research that shows quality outcomes are higher when palliative care is combined with cancer or other acute care. When concurrently involved with other specialties, the costs during a patient's last year or two of life go down, and they go down not through rationing, but through highly individualized, shared decision-making."

Byock says that at Dartmouth-Hitchcock, the cost of caring for patients with serious illness drops by $400 to $500 per patient day when palliative care is used.

Michele Sacco, executive director of palliative care and health care staffing for the Joint Commission, says it has certified 33 hospital palliative care programs with more than 20 in the pipeline this year and another 15 pursuing certification funding through the LiveStrong Foundation. The certification team explores the composition of the palliative care program, its infrastructure, leadership support and management.

"We're seeing improved customer satisfaction scores and an easing of the burdens on staff as core teams manage these patients, many of whom have multiple comorbidities," Sacco says.

Mark Taylor is a freelance writer in Indiana.

Executive Corner

James Diegel, president and CEO of St. Charles Health System in Bend, Ore., AHA board member and the chair of the AHA Committee on Performance Improvement, offered the following tips to hospital executives implementing advanced illness management programs.

1 Be inclusive

Invite all providers of care who deliver services related to advanced illness management to be involved in program planning and ongoing monitoring.

2 Involve physicians

A physician champion must direct the initiative. Better yet, choose a dyadic leadership model, a team approach that demonstrates coordination and cooperation at the very top. In this case, it would include a physician leader for the clinical components and an administrative leader for the nonclinical components of the program.

3 Community advisory committee

It is critical to start a community advisory committee and have patients, family members and community members involved in all aspects of program/service planning and ongoing monitoring. Consider joining the Conversation Project through the Institute for Healthcare Improvement.

4 Financial benefits

Make the case for financial benefits, as well as patient choice and satisfaction. Done properly, an advanced illness management program can pay for itself in reduced length of stay and emergency department visits, as well as lower readmission rates and per patient costs. In 2012, for example, St. Charles reported a lower 30-day AIM patient readmission rate (4.86 percent vs. an expected rate of 10.4 percent) and an average direct variable cost avoidance per inpatient AIM consultation of $4,000.