Hospice use increasing — but so is ICU utilization, say new data
Bioethicists must advocate for informed decision-making
Are Americans' end-of-life choices shifting? "It's sort of a question of whether the glass is half empty or half full," says Joan M. Teno, MD, MS, professor of health services, policy, and practice at Brown University's Warren Alpert School of Medicine, Providence, RI.
A decade ago, researchers demonstrated that cancer care was becoming increasingly aggressive among Americans near the end of life during the 1990s.1
"Patients became more likely to receive chemotherapy near death and to visit the emergency room, be hospitalized, and be admitted to the ICU [intensive care unit]," says Jennifer W. Mack, MD, MPH, co-director of the Pediatric Hematology/Oncology Fellowship Program and assistant professor in pediatrics at Harvard Medical School in Boston, MA.
On the other hand, the study also found that fewer patients died in the hospital, and more used hospice care at the end of life. A 2013 study by Teno and colleagues found similarly mixed results.
Researchers looked at end-of-life care among Medicare beneficiaries with cancer, chronic obstructive pulmonary disease, or dementia. They found that while hospice use steadily increased from 2000 to 2009 and deaths in the hospital declined, ICU care in the last month of life increased.2
While hospice use at the time of death increased from 21.6% to 32.3% to 42.2%, 28.4% of patients used a hospice for three days or less in 2009. Of these late hospice referrals, 40.3% were preceded by hospitalization with an ICU stay.
In her own practice, Teno often sees patients admitted to a hospice after being in an inpatient unit for more than 24 hours. "My concern is that after 24 hours, they are not really getting the true benefits of hospice," she says. "You are still then dealing with all the problematic care that occurred prior to that."
The mean number of health care transitions in the last 90 days of life increased from 2.1 to 3.1 per decedent. "Is this really what we hope and expect out of our health care system — to have a lot of loose ends occurring in the last days of life?" Teno asks.
Rethink financial incentives
Although the use of hospice care for Medicare patients with advanced cancer is increasing, many patients do not receive hospice care until they are within three days of the end of life, according to a 2013 report from the Lebanon, NH-based Dartmouth Atlas Project.3 In 2010, more patients were treated in ICUs in their last month of life than in the period from 2003 to 2007.
The researchers were surprised that end-of-life care at cancer centers was not different from the care at community hospitals, says David C. Goodman, MD, MS, professor of pediatrics and health policy at The Dartmouth Institute for Health Policy and Clinical Practice in Lebanon, NH, and co-principle investigator of the Dartmouth Atlas of Health Care.
"While we found marked variation across all types of hospitals, on average, end-of-life care fell short of the care most patients want — care that provides comfort and allows patients to spend as much time in a home-like environment with their families," he says.
Penalties for hospital readmissions may lead hospitals to work toward better outpatient management of patients so they can avoid readmission, suggests Mack. Hospice, other palliative care, or home care services could offer better care for dying patients post-discharge, resulting in a lower likelihood of readmission. "Thus, it's likely that readmission penalties could bolster referrals to home care services that may be quite helpful to dying patients," says Mack.
Of Medicare's $550 billion annual budget, 17% is spent on patients' last six months of life, according to the Dartmouth Atlas Project's analysis. Between 2007 and 2010, Medicare spending on patients in the ICU in the last two years of life increased 13% to nearly $70,000 per patient.
"We have to seriously rethink the financial incentives of fee-for-service Medicare and dual eligibles, and move to a system that rewards
quality," urges Teno.
Quality not measured
Accountable Care Organizations (ACOs) are moving in the right direction, says Teno, by experimenting with payment systems in order to find a way to encourage both better quality and more cost-effective care.
"We want to be sure that we are not just doing another procedure or spending another day in the ICU without talking to that dying patient or family member," she says.
The newer payment models don't measure the quality of care at the end of life any better than previous payment models, however. "When you think about who are the high utilizers of health care, people who are dying are one of those groups of people," says Teno. "It's important to make sure that this vulnerable population gets high-quality care."
There is a need to report back to providers what they are doing well, and what they need to improve, when providing end-of-life care, underscores Teno. "Sometimes we get stuck in measuring what's easy to measure. Quality is much more complex than giving aspirin to patients with an acute [myocardial infarction]," she says.
ACOs could use a shared savings approach, she suggests, to incentivize physicians to do a better job of helping seriously ill patients and families formulate goals of care.
"That is an opportunity for ACOs, but there are also risks," says Teno. "If you don't end up using expensive care for this population, you could save even more money by just not providing high-quality care at all."
The goal is to find the right fit for the individual patient. "Somehow we have to figure out how to align payment to do that," says Teno. "Right now, the system rewards another day in the ICU. It doesn't reward talking to a patient about their goals of care."
Providers need to "rise to the occasion"
Providers need to be more proactive in educating patients about their prognosis, helping them formulate goals of care and care plans, and ensuring that those goals are honored, says Teno.
This is a difficult task for a dying patient and their family to take on all by themselves. "I would hope that health care providers rise to the occasion, and will do what's best for the patient and family during some of the more difficult events in a family's life," Teno says.
Bioethicists can play an important role in advocating for informed decision-making. "Honest patient-physician discussions about prognosis and end-of-life care planning allow patients the ability to make thoughtful decisions about the care they wish to receive at the end of life," says Mack.
Patients often don't know they are dying, or don't know that they have incurable disease. These patients may be more likely to pursue aggressive care over palliative measures at the end of life.
"While receipt of aggressive care is not necessarily wrong, it is associated with poorer quality of life at the end of life," says Mack. "Any decision to pursue aggressive measures in the face of a poor prognosis should be informed."
- Earle CC, Landrum MB, Souza JM, et al. Aggressiveness of cancer care near the end of life: Is it a quality-of-care issue? J Clin Oncol 2008; 26(23):38603866.
- 2 . Teno JM, Gozalo PL, Bynum JPW, et al. Change in end-of-life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA. 2013;309(5):470-477.
- Goodman DC, Morden NE, Chang C, et al: Trends in cancer care near the end of life. Lebanon, NH; The Dartmouth Institute. September 4, 2013.
- David C. Goodman, MD, MS, Professor of Pediatrics/Health Policy, The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, NH. Phone: (603) 653-0815. E-mail: David.C.Goodman@dartmouth.edu.
- Jennifer W. Mack, MD, MPH, Co-Director, Pediatric Hematology/Oncology Fellowship Program, Assistant Professor in Pediatrics, Harvard Medical School, Boston, MA. Phone: (617) 632-5430. E-mail: email@example.com.
- Joan M. Teno, MD, MS, Professor of Health Services, Policy, and Practice, Warren Alpert School of Medicine, Brown University, Providence, RI. Phone: (401) 863-9627. E-mail: firstname.lastname@example.org.