Health care leaders have for years been calling for patients to have a greater say in their care, but, dishearteningly, doctors’ beliefs outweigh patient values at the end of life, a Harvard study into cancer patients found.
Stat News writes that Dr Nancy Keating has seen what too much health care looks like. The Harvard Medical School professor recalls a patient with metastatic lung cancer who, despite not wanting chemotherapy, was convinced by her doctor to try a more targeted treatment. The patient spent the end of her life in the hospital – the exact place she had hoped to avoid.
Keating, also a physician at Brigham and Women’s Hospital, studies how to deliver high-quality care to patients with cancer. Her latest work examines the factors that contribute to large hospital-by-hospital differences in end-of-life spending for cancer patients. The study reveals that the variation in the intensity of treatment stems more from the availability of services and physicians’ discomfort navigating end-of-life choices than from patients’ wishes.
From surveys, conducted between 2003 and 2005, Keating found that physicians in higher-spending areas reported less comfort addressing end-of-life issues. They felt less equipped to treat end-of-life symptoms, to discuss “do not resuscitate” status, and to present care options such as hospice to their patients.
“We really can discount the idea that high-spending areas are responding to patient demand,” said Keating. Rather, physicians’ beliefs are a major driver of higher spending in the last month of life.
The report says Keating and her co-authors – researchers at Harvard, Kaiser Permanente Northwest, the Dana-Farber Cancer Institute, and Indiana University School of Medicine – acknowledge that their survey data may be outdated. Physicians’ attitudes toward palliative and hospice care have likely shifted in the past decade. But other researchers argue that the findings still matter, particularly because newly developed therapies have opened up more avenues for intensive and expensive end-of-life care.
Dr Amber Barnato, a palliative care specialist and researcher at the Dartmouth Institute for Health Policy and Clinical Practice, views immunotherapy as the counterweight to palliative care in cancer treatment. “Although it’s possible that attitudes could have improved over time toward a focus on a more palliative approach at the end of life, it could also be that there’s renewed hope and magical thinking that surrounds this new treatment,” she said.
The report says Barnato’s earlier research laid the groundwork for Keating’s study. Barnato showed that health care spending in the last month of life – a proxy for the intensity of care – varies substantially across regions served primarily by individual hospitals, though the people living in these areas are equally sick and have similar wishes for end-of-life treatment.
Barnato and her team asked Medicare beneficiaries to respond to hypothetical situations: If you were dying of a terminal disease, would you want to spend your final days at home or in the hospital? Would you worry about receiving too little or too much medical care? Would you choose to take comfort drugs that could shorten your life or life-extending medications that could cause pain?
The survey revealed a similar range of preferences across hospital regions, and raised a new question: If patients don’t drive the variation in spending, then who does?
Keating and her fellow researchers first replicated Barnato’s findings in a novel way. Instead of using data on hypothetical situations, they drew from surveys conducted between 2003 and 2005 of patients with either advanced lung or colorectal cancer facing the end of their lives. When faced with real mortality, patient preferences for care did not differ across hospital regions. Spending, however, still did.
Linking the survey data to Medicare claims, the researchers found a nearly two-fold difference in expenditures during the last month of life in the lowest-spending areas compared to the highest ones.
Higher-spending regions had different characteristics than lower-spending ones. They were more populous and had a greater percentage of non-white residents, fewer primary care providers, and fewer hospital beds and hospice facilities per 10,000 people. Patients in higher-spending areas also had lower levels of social supports.
Another significant difference: Their doctors felt less prepared to care for dying patients.
Barnato is quoted in the report as saying that the new study probably underestimates how much physician attitudes contribute to care decisions. Her more recent work, conducting case studies in different hospitals, shows that there are major differences in the norms for decision-making between hospitals that provide high-intensity end-of-life care and those that provide low-intensity care. Many aspects of physician bias play into their care choices, she said, including: how physicians define dying, whether they view respiratory machines as a temporary tool used in recovery or as life-sustaining machines, and the degree to which they defer decision-making responsibility to patients and their family. All of these attitudes and beliefs change the way doctors provide care for their patients.
These attitudes might also be influenced by how physicians would choose their own care. To her surprise, Keating found that doctors in higher-spending areas were less likely to agree that they would enrol themselves in hospice if diagnosed with a terminal disease.
“I’ve always had the idea that most doctors think really highly of hospice and would certainly want to enrol in hospice themselves if they were terminally ill,” Keating said. Maybe, she said, those physicians have seen patients undergo bad experiences with hospice care. Or maybe, it is a purely educational issue – doctors in those areas lack information on the benefits of hospice. Either way, “we need to understand why some doctors have more negative views about hospice and what can we do to improve those.”
The report says health care leaders have for years been calling for giving patients a greater voice in their care, so it may be disheartening to learn that physicians’ beliefs can outweigh patient values at the end of life. Dr Gabriel Brooks, a medical oncologist at Dartmouth-Hitchcock, said in cancer care, there will always be some surrogate decision-making by physicians. For many patients, he said, a cancer diagnosis is their first brush with a serious, life-changing illness. Patients don’t immediately know what their preferences are, so they lean on their doctors to help them make decisions about care.
Still, doctors can do a better job of incorporating their patients’ desires into those decisions, said Brooks, who has previously collaborated with some of the authors of the new study. There are so many different players who participate in care decisions, Brooks added. “You have the patient, you have the family, you have the doctor – and we can all be guilty at different times of pushing beyond a point when our treatments are delivering what we want them to deliver.”
When new treatment options are presented to patients and their families, “it’s easy to say ‘yes’ and much harder to say ‘no,’” said Keating – even when saying “no” is more consistent with their wishes.
Keating said in the report that she is hopeful about the future of palliative and hospice care. She said that, in the decade since the data were collected, there has been an increase in hospice use. And she thinks that the next generation of physicians will feel more comfortable with saying “no” to aggressive treatment when it’s the right call for patients.
Recent literature shows that training physicians to discuss end-of-life issues can go a long way in helping patients receive the kind of care they want. “I’m optimistic that we can help with a more holistic view that isn’t only about what more can I do to prolong someone’s life but to really think about how can I help people with serious illness have a better experience at the end of life,” said Keating.
Abstract 1
Health care spending in the months before death varies across geographic areas but is not associated with outcomes. Using data from the prospective multiregional Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) study, we assessed the extent to which such variation is explained by differences in patients’ sociodemographic factors, clinical factors, and beliefs; physicians’ beliefs; and the availability of services. Among 1,132 patients ages sixty-five and older who were diagnosed with lung or colorectal cancer in 2003–05, had advanced-stage cancer, died before 2013, and were enrolled in fee-for-service Medicare, mean expenditures in the last month of life were $13,663. Physicians in higher-spending areas reported less knowledge about and comfort with treating dying patients and less positive attitudes about hospice, compared to those in lower-spending areas. Higher-spending areas also had more physicians and fewer primary care providers and hospices in proportion to their total population than lower-spending areas did. Availability of services and physicians’ beliefs, but not patients’ beliefs, were important in explaining geographic variations in end-of-life spending. Enhanced training to better equip physicians to care for patients at the end of life and strategic resource allocation may have potential for decreasing unwarranted variation in care.
Authors
Nancy L Keating, Haiden A Huskamp, Elena Kouri, Deborah Schrag, Mark C Hornbrook, David A Haggstrom, Mary Beth Landrum
Abstract 2
Objective: We sought to test whether variations across regions in end-of-life (EOL) treatment intensity are associated with regional differences in patient preferences for EOL care.
Research Design: Dual-language (English/Spanish) survey conducted March to October 2005, either by mail or computer-assisted telephone questionnaire, among a probability sample of 3480 Medicare part A and/or B eligible beneficiaries in the 20% denominator file, age 65 or older on July 1, 2003. Data collected included demographics, health status, and general preferences for medical care in the event the respondent had a serious illness and less than 1 year to live. EOL concerns and preferences were regressed on hospital referral region EOL spending, a validated measure of treatment intensity.
Results: A total of 2515 Medicare beneficiaries completed the survey (65% response rate). In analyses adjusted for age, sex, race/ethnicity, education, financial strain, and health status, there were no differences by spending in concern about getting too little treatment (39.6% in lowest spending quintile, Q1; 41.2% in highest, Q5; P value for trend, 0.637) or too much treatment (44.2% Q1, 45.1% Q5; P = 0.797) at the end of life, preference for spending their last days in a hospital (8.4% Q1, 8.5% Q5; P = 0.965), for potentially life-prolonging drugs that made them feel worse all the time (14.4% Q1, 16.5% Q5; P = 0.326), for palliative drugs, even if they might be life-shortening (77.7% Q1, 73.4% Q5; P = 0.138), for mechanical ventilation if it would extend their life by 1 month (21% Q1, 21.4% Q5; P = 0.870) or by 1 week (12.1% Q1, 11.7%; P = 0.875).
Conclusions: Medicare beneficiaries generally prefer treatment focused on palliation rather than life-extension. Differences in preferences are unlikely to explain regional variations in EOL spending.
Authors
Amber E Barnato, M Brooke Herndon, Denise L Anthony, Patricia M Gallagher, Jonathan S Skinner, Julie PW Bynum, Elliott S Fisher
[link url="https://www.statnews.com/2018/07/09/cancer-patients-end-of-life-physician-beliefs/"]Stat News report[/link]
[link url="https://www.healthaffairs.org/doi/abs/10.1377/hlthaff.2018.0015"]Health Affairs abstract[/link]
[link url="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2147061/"]Medical Care abstract[/link]