End-of-life policymaking may be as inevitable as death itself – an issue that lawmakers may fear and loathe, but one that is unlikely to ever go away.

The “death panel” debate that circled an early provision of the Affordable Care Act that would have provided payment to physicians for advance planning and end-of-life consultations was like a vulture trying to kill its prey. But while it may have temporarily squashed the issue (the provision was stricken from the bill that became law), the costs, ethics and concerns about end-of-life care will not let the topic die.

And, despite some raw wounds, many congressional leaders, lobbyists, providers and advocates say now is the time to revive a national discussion about end-of-life care, advance care planning and palliative and hospice care. Not just because they can save Medicare money and improve care for seriously ill and dying patients, but because it’s the right thing to do.

A confluence of factors is driving a renewed look at the quality and cost of care Americans receive, on average, in the last two years of their lives.

  • In February 2012, the Joint Commission certified the palliative care programs of five hospitals, which was a first. This could lead to accreditation of other palliative care programs.
  • The American Hospital Association issued a report in March 2012 titled “Advanced Illness Management Strategies,” which encouraged hospitals to improve advanced illness care.
  • The American Association of Medical Colleges projected a shortage of 62,900 physicians in the United States by 2015, partly attributable to an aging population and to 30 million newly insured Americans.
  • The Institute of Medicine formed the Committee on Transforming End of Life Care and expects to issue a report next year. The committee will explore the state of end of life care today in the U.S., examining delivery, costs, planning, approaches and the education of providers, patients and their families.
  • In January 2013 the Coalition to Transform Advanced Care (C-TAC) held its first national summit in WashingtonD.C., to improve the quality and access to compassionate care for people with advanced illnesses. More than 400 participants representing patients, employers, payers, healthcare providers, legislators and advocacy organizations attended the event, which examined the state of care today and recommended actions to improve it.
  • Congressional leaders are proposing several bills to improve advance care planning and palliative care.

U.S. Rep. Earl Blumenauer (D-Ore.), who sponsored the 2009 House bill that included advance care planning consultations, said it is time to revive that discussion.

Blumenauer said he’s seen a “groundswell of overwhelming public support for empowering people and encouraging advance care planning. Scarcely a week goes by without some article or example that underscores the need for people to understand what their choices are and whatever they decide upon is respected and enforced.”

He said his bipartisan-backed Personalize Your Care Act “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.”

Blumenauer is not alone in his beliefs.

Lobbyists and health care advocacy organizations agree that the winds are changing.

Dick Woodruff, vice president of federal relations for the American Cancer Society and its advocacy arm, ACS Cancer Action Network, is working with legislators to introduce two bills. 

The first bill, which was introduced in both the House (H.B. 1339) and the Senate (S. 641) are professional development bills to increase the number of permanent faculty teaching palliative care in accredited medical schools and attempts to deal with shortages of palliative care professionals. The House bill has 40 sponsors and the Senate bill as six sponsors.

The second bill is called the Patient-Centered Quality of Life Act and will be introduced in both houses. It would fund education and research into palliative care and improve public outreach to inform patients.

Barriers to palliative care include a shortage of trained physicians and nurses, a lack of research into best practices and a misalignment of payment incentives.

As the nation moves away from a fee-for-service system of reimbursement to a value-based payment system, including palliative care services within bundled payments will help pay for end-of-life services, he said.

“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,” said Jon Keyserling, senior vice president of health care policy for the National Hospice and Palliative Care Organization. He added that the time has come for reasonable parties to ignite a discussion about advanced care planning within Medicare and Medicaid. “We are supporting those efforts,” he said.

Many members of Congress and their families have used hospice, Keyserling said. “There is a very receptive audience among policymakers for promoting high quality end-of-life care. The key focus is building it into a continuum of care.”

The Business Case for Advance Care Planning and End-of-Life Care

There is growing evidence that investments in advance care planning, palliative and hospice care pay off, not only in improved patient and family member satisfaction but also in greater longevity and cost savings.

La-Crosse, Wis.-based Gundersen Lutheran Health System, whose Respecting Choices advance care planning program has become an internationally accepted model, has demonstrated that by integrating planning throughout the health care system, it can provide the care that terminally ill patients want while reducing hospital readmissions, length of hospital stay and average reimbursement per deceased patient.

A 2007 Dartmouth Atlas study found Gundersen Lutheran’s average per-patient reimbursement in the last 24 months of life was $18,359, nearly $7,500 less than the U.S. hospital average of $25,860, and considerably less than the Cleveland Clinic ($31,252), UCLA ($63,821) or the New York University Medical Center ($65,660). 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, and far lower than UCLA (31.3 days) or the NYU Medical Center (54.3 days).

A 2006 Duke University study found the average Medicare savings per U.S. hospice patient is approximately $2,300. Indianapolis’ safety net hospital, Wishard Health Services, reported an average savings of $5,000 per hospitalized patient and $1,500 per discharged patient.

What Needs to Happen

Gregory Gramelspacher, M.D., professor of medicine at Indiana University School of Medicine and director of Wishard’s Palliative Care Program, said something radical must happen for end-of-life care to improve.

“We have to quit paying for the wrong stuff and start paying for right stuff,” Gramelspacher said. “Instead of turning around the aircraft carrier, we need to sink it and start over.”

He said America has too many highly paid specialists and not enough well-trained primary care physicians, especially doctors trained in palliative care. “We have huge unmet needs and can’t find the trained professionals to take care of them,” he said.

For example, Wishard’s palliative care program averaged 150 annual consultations 13 years ago, which has grown to more than 850 in 2012.

“From the beginning we’ve worked to keep patients out of the hospital and treat them as outpatients,” he said. “To have a patient dying of metastatic cancer spending three to four days in the ICU in the last weeks of life is not only costly, it’s wrong.”

Hospitals around the country are integrating palliative approaches into their systems of care, led by the American Hospital Association and its state hospital association members.

Doug Leonard, president of the Indiana Hospital Association, said an IHA task force is exploring how Indiana hospitals, health care providers and communities can improve advance care planning and palliative care.

“There are many hospitals already doing an excellent job that we can learn from and we’re trying to initiate a statewide dialogue to share best practices,” Leonard said. “We need to make this—like Gundersen Lutheran has—a community topic discussed in churches, schools and community centers, as well as with hospitals and health care providers.” 

Moving Forward

C-TAC co-founder Bill Novelli, a former CEO of AARP, characterized end-of-life planning and care as “the most significant and most human challenge we face in health care. It intersects with religion, spirituality, family life and our national conscience. I have worked on many big social change issues and I believe that this one is ripe for reform.”

Novelli said the only way to reform America’s fragmented, haphazard approach to end-of-life care “is to be bipartisan, big and strong—with many players and sometimes strange bedfellows. And to tackle the challenges in a synergistic way rather than in sequence,” said Novelli, now a professor at Georgetown University’s McDonough School of Business.

“This may be the only health issue where if you give people what they want and improve the quality of care, you can also save money. Cost containment is a result of quality care in advanced illness. And that is not lost on the people scrambling to cut the debt and deficit.”

He said the 90-member C-TAC coalition includes big hospitals and health systems, commercial payers, faith-based organizations and prominent health care advocacy organizations and companies.

Novelli said the timing may be propitious. “President Obama isn’t running anymore and now hopefully the administration and Congress will push this forward,” he said, noting that the Obama administration is only now beginning to focus on improving end-of-life planning and care. “We’ve had some productive meetings with them and there are people about to carry the water.”

He said three senators spoke at the C-TAC January summit, both Republicans and Democrats. “None are saying this issue is bipartisan. They’re saying it’s really important.”

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