WASHINGTON—Better options are needed for treating patients with advanced cancer, said speakers at a conference here hosted by the Coalition to Transform Advanced Care (C-TAC).
Speakers also agreed that discussions about end-of-life care need to be handled sensitively and compassionately, to avoid triggering another emotional public debate about “death panels” like the one that accompanied recent passage of health reform legislation, the Affordable Care Act. That debate was an over-reaction to a suggestion that Medicare patients have an informed conversation with their health care providers about advance directives. The most vocally critical consumers charged that conversations about advance directives were simply a thinly veiled attempt to save Medicare money. Several speakers at the meeting made the point that many patients at the end of life remain in denial about their impending death, and even if they themselves accept it, often family members do not.
Senior Navigation and Planning Act
Also speaking at the conference, Senator Mark Warner (D-VA) said he plans shortly to introduce the Senior Navigation and Planning Act, which contains a requirement for health care providers to provide certain Medicare beneficiaries with information on advance directives and other care planning tools. This legislation, first introduced in 2009, also contains incentives for health providers to achieve accreditation and certification in hospice and palliative care, and it calls for a national educational campaign to increase public awareness about the importance of end-of-life planning. “We are the only industrial nation in the world that has not had this kind of conversation as a country,” he said. “We've got to make it safe to talk about this.”
Citing the aging of the large cohort of baby boomers, longevity trends of the general population, and other sobering demographics, speakers from medicine, the faith community, social sciences, and caregiving advocacy groups warned that the traditional acute-care treatment model for reversible conditions does not work for chronic, worsening illnesses and needs to be transformed. “This is not about a good death—it's about a good life,” said Diane E. Meier, MD, Director of the Center to Advance Palliative Care at Mount Sinai School of Medicine.
“We all die. A fundamental question is do we want to have a say in how we live?” agreed Jeffrey Thompson, MD, CEO of the Gundersen Health System in the upper Midwest.
Meier pointed out that about five percent of Americans, the sickest, account for about half of health care spending. Data collected by C-TAC show that over the next 20 years, the number of Americans over age 65 will nearly double to almost 72 million; and by 2030, nine million Americans will be over age 85 (compared with only about four million in 2000).
In addition, beneficiaries with more than five chronic conditions represent the fastest growing segment of the Medicare population, Coalition data show. C-TAC has developed an Advanced Care Model (ACM) for end of life based on best practices for patients with cancer and other advanced illnesses. As explained by the Coalition, the model is an interdisciplinary care management intervention that focuses on each patient's personal values and goals to drive care, to anticipate and prevent crises, and to increase the quality of and satisfaction with care on the part of patients, clinicians, and families.
Asked by OT if she thinks C-TAC's initiative to promote a different model of care for patients with advanced cancer will help achieve a constructive national dialogue, steering committee member and cancer survivor Ellen Stovall, Senior Health Policy Advisor for the National Coalition for Cancer Survivorship (NCCS), praised C-TAC's efforts and said, “This is something we care so much about [at NCCS]. To me it's basic humanistic care.”
Like many other speakers, she recommended that religious leaders from the faith community speak openly about end-of-life planning in their places of worship to emphasize the compassionate, patient-centered value of end-of-life care planning. She also said she hoped politics would not derail honest efforts to promote a better understanding and awareness of the value of thoughtful end-of-life planning.
Early last year, ASCO released a provisional clinical opinion recommending that palliative care be integrated into standard oncology care, and should be “considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden” (OT, 3/25/12). That opinion, from a panel chaired by Thomas J. Smith, MD, Director of Palliative Care at Johns Hopkins Hospital, said, “Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than three weeks before their death, which limits the benefits they may gain from these services.”
ASCO's 24-page patient booklet, “Advanced Cancer Care Planning” (available on Cancer.net) contains practical advice for those with late-stage disease. In June 2001 the IOM released a report, “Improving Palliative Care for Cancer,” and stated: “In accepting a single-minded focus on research toward cure, we have inadvertently devalued the critical need to care for and support patients with advanced disease.”
Showcased at the meeting were several successful best-practice models of delivering care to patients with advanced cancer and other advanced illnesses:
* Sutter Health's comprehensive Advanced Illness Management (AIM) program, piloted in Sacramento, California, which reduced hospitalization rates by more than 60 percent at 30, 60, and 90 days following enrollment in the program. Direct inpatient costs dropped by $2,000 per enrollee per month on average, and more than two thirds of enrollees accepted hospice enrollment when it was recommended. In this program, intensive care unit visits declined by 85 percent and emergency department admissions dropped by 45 to 55 percent, said Jeffrey Burnich, MD, Sutter Senior Vice President and Executive Officer. Most important, patient satisfaction was high.
* Aetna's Compassionate Care Program, which coordinates medical care, benefits, and community-based services, and eliminates barriers to continuity of care such as Medicare hospice eligibility constraints. The percentage of enrollees with a hospitalization decreased from 88 to 30 percent; acute-care inpatient days decreased by 82 percent; emergency department visits decreased by 77 percent, and ICU days dropped by 86 percent in this program, said Randall S. Krakauer, MD, Aetna's National Medicare Medical Director.
“We pretty much tripled the hospice selection rate, with no pressure on choice. There is a high satisfaction rate. …We have heard not one single complaint on [the Compassionate Care Program], and this is truly remarkable.” He added, “If this had been a drug, I think it would be standard of care now.”
* Gundersen Health System's “Respecting Choices” program, which is being implemented at some 55 sites in the upper Midwestern United States and is in widespread use in Australia and Canada. At Gundersen Lutheran Hospital, total Medicare reimbursement and hospital days for patients in the last two years of life are now 29 and 43 percent lower, respectively, than the national average.
Thompson noted that Gundersen incorporated the faith community about 20 years ago, and also reached out to Rotary Clubs to promote the value of informed choices about end-of-life care. “There is consistency between patient wishes and the care provided,” said Thompson. “The vast majority of providers want to follow the patient's wishes. This is an opportunity to do the right thing on many levels.”
He added that the program helps family members struggling to make decisions about a loved one, who—without direction—say, “If we only knew what they would have wanted done.”
Along with the Coalition, the hosts of the meeting were the American Heart Association, the American Hospital Association, the American Society of Clinical Oncology, the Institute of Medicine, the National Hospice and Palliative Care Organization, Pfizer, the American Cancer Society Cancer Action Network, Cambia Health Foundation, and Leonard D. Schaeffer.