Aggressive end-of-life care: A disservice to patients
The availability of more effective and less toxic anticancer agents has made it increasingly difficult for clinicians to discern when to discontinue treatment for patients with advanced solid tumors.
A clinician’s instinct to do everything possible to extend a patient’s life may lead to futile treatment.
“This is an exciting time in oncology with the rapid development of effective therapies, and it is understandable that patients also are feeling this excitement and want to receive novel therapies,” Jennifer S. Temel, MD, clinical director of thoracic oncology and director of the Cancer Outcomes Research Program at Massachusetts General Hospital, told HemOnc Today. “However, the downside is that it is sometimes difficult for clinicians and patients to know when it is not in the best interest of the patient to try yet another therapy.”
Not only are common markers of aggressive end-of-life care still prevalent — such as use of chemotherapy within the last few days of life as well as death in the hospital — but research also has revealed that patients are unnecessarily receiving preventive therapies in their final days of life for comorbid conditions, such as high blood pressure or diabetes.
This trend of aggressive end-of-life care has prompted experts to urge oncologists to initiate discussions with patients about expectations and goals of care earlier in the cancer trajectory.
“Clinicians should incorporate end-of-life discussions as part of their usual care throughout the course of illness rather than waiting for patients to become quite ill or at the end of life,” Temel said. “It is important to disclose when a patient has an incurable cancer and when the goal of treatment is not curative so that patients and their families are prepared in knowing that the cancer will likely be the reason for the patient’s death.”
HemOnc Today spoke with experts about why this trend of aggressive end-of-life care persists among patients with advanced solid tumors, reasons why these patients continue to receive preventive therapies and spend the remainder of their lives in the hospital rather than at home, and the need for earlier physician-led end-of-life discussions and plans.
‘Substantial variability across areas’
Certain patient and practice characteristics may contribute to the overuse of therapy at the end of life.
In a study published in 2018 in Health Affairs, Nancy L. Keating, MD, and colleagues showed geographical location was associated with aggressive end-of-life care.
In high-spending areas, individuals with end-stage lung cancer and colorectal cancer received more intensive care, with double the health care costs of low-spending areas, during the last month of life.
“This study found that area-level variations in intensity of end-of-life care are driven by differences in physicians’ practice style and availability of services and not by patient characteristics and preferences,” Keating, professor of health care policy and medicine in the department of health care policy at Harvard Medical School, and physician in the division of general internal medicine at Brigham and Women’s Hospital, told HemOnc Today. “We learned from this study that there is substantial variability across areas in the norms and behaviors of care delivered and the beliefs of physicians.”
Compared with physicians who treated patients in lower-spending areas, physicians who treated patients in areas where health care spending was higher reported less knowledge about and comfort treating patients at the end of life, as well as less positive attitudes about hospice.
“This was very surprising to me,” Keating said. “As a physician who has positive impressions of hospice, I assumed all physicians felt the same. However, this was not the case. It was very interesting to realize that the normative behavior in these higher-spending areas is likely leading them to provide more intensive care for patients who are dying.”
In a study published this year in JNCI Cancer Spectrum, Sineshaw and colleagues found that treatment for patients with incurable metastatic cancer varied significantly by cancer type and patient and facility characteristics.
Treatment with surgery ranged from 0.4% among patients with pancreatic cancer to 28.3% among patients with colorectal cancer; use of chemotherapy ranged from 5.8% among those with colorectal cancer to 11% among those with lung cancer and breast cancer; and use of radiotherapy ranged from 1.3% for those with pancreatic cancer to 18.7% for those with lung cancer.
Moreover, patients with lung cancer who received treatment at community centers had a 48% lower likelihood of receiving radiation at the end of life than those treated at NCI-designated cancer centers.
“In my opinion, much of the aggressive cancer care at the end of life never even had a chance of working,” Charles D. Blanke, MD, FACP, FASCO, palliative care expert at Oregon Health & Science University and a HemOnc Today Editorial Board Member, said during an interview. “Trying it is the wrong thing to do in terms of the message that we send to patients. We are also wasting health care resources that can be better spent.”
In another study, presented in 2016 at ASCO Annual Meeting, researchers found that a significant proportion of patients with advanced solid tumors received at least one form of aggressive care within the last 30 days of life.
“We analyzed health care claims data from 2007 to 2014 for more than 28,000 patients and found that, even as late as 2014, aggressive end-of-life care was still a significant problem,” study author Ronald C. Chen, MD, MPH, associate professor of radiation oncology at The University of North Carolina at Chapel Hill, told HemOnc Today. “It is a problem that is well-recognized. While I am not aware of any data beyond 2014, I suspect that [aggressive end-of-life care] continues to be a problem that we must tackle.”
Aggressive end-of-life care also appears to occur across age groups.
Falchook and colleagues assessed the use of aggressive care and hospice services among patients aged younger than 65 years who died between 2007 and 2014 of metastatic lung cancer (n = 12,764), colorectal cancer (n = 5,207), breast cancer (n = 5,855), pancreatic cancer (n = 3,397) and prostate cancer (n = 1,508).
Results, published in 2017 in Journal of the National Cancer Institute, showed between 10.1% and 14.1% of patients received chemotherapy within the last 14 days of life; between 15.9% and 20.6% received intensive care within the last 30 days of life; and between 1.5% and 2.5% of patients were admitted to the ED two or more times within the last 30 days of life.
Between 54.4% and 59.6% of patients across cancer types enrolled in hospice care at least 3 days before death. However, nearly 60% of patients were admitted to the hospital within the last 30 days of life, and one-third of patients died in the hospital.
“There does seem to be increasing recognition that continuing to give chemotherapy to dying patients is probably not ideal,” Keating said. “However, there are still many patients who are receiving chemotherapy at the end of life that is unlikely to result in substantial benefit.”
Some patients may misunderstand the purpose of chemotherapy at end of life, Keating said.
“Chemotherapy for advanced solid tumors is more of a palliative approach — treatment that helps ease their symptoms and may prolong their life, but will not lead to cure,” she said. “However, many patients with advanced solid tumors still think that treatment will cure them. They often overestimate the benefit of another round of chemotherapy when their tumor has not responded to earlier chemotherapy.
“As physicians, we should be doing a better job of helping patients understand the goals of chemotherapy, which may lead to decisions to not pursue additional chemotherapy and instead focus on improving their quality of life,” she added.
Location of death
Chen and colleagues also found that nearly one-third of patients aged younger than 65 years die in the hospital instead of at home.
“This number is too high,” Chen said. “Most patients with incurable cancer would prefer being at home with their family in their own environment. So — why is [the opposite] happening?”
This can be explained, in part, by the lack of communication between the physician and patient on their goals of care, according to Chen.
“For the health care system, and the oncology community in general, the goals of care for patients with incurable cancer certainly should be discussed throughout the patient’s cancer trajectory, and expectations should be understood early on,” Chen said. “This is an incurable disease; therefore, going to the hospital at a certain point may do more harm than good for the patient. Having these conversations early on can help address this important issue.”
“Although some patients do not have the family support to spend their last days at home or have symptoms that are too difficult to control in the home setting, some patients who die in the hospital would have been able to and preferred to die at home, but discussions about the patient’s end-of-life goals of care and preferences happened too late to enable this,” Temel said.
Joan M. Teno, MD, MS, physician in the division of general internal medicine and geriatrics at Oregon Health & Science University, and colleagues sought to describe secular changes in site of death and patterns of care between 2000 and 2015.
Their study included 1.36 million decedents with Medicare fee-for-service and 871,845 decedents with Medicare Advantage. Patients received treatment at an acute care hospital, at home or in the community, at a hospice inpatient care unit, or at a nursing home.
Results of the study, published in 2018 in JAMA, showed that the proportion of deaths that occurred in an acute care hospital among those with Medicare fee-for-service decreased from 32.6% (95% CI, 32.4-32.8) in 2000 to 19.8% (95% CI, 19.6-20) in 2015, and deaths in a home or community setting that included assisted living facilities increased from 30.7% (95% CI, 30.6-30.9) in 2000 to 40.1% (95% CI, 39.9-40.3) in 2015.
Researchers observed similar patterns in the rates for site of death, place of care and health care transitions among decedents with Medicare Advantage.
“Although studies like this suggest a bit of a mixed picture, the general feeling is that care continues to be more aggressive than might be ideal for patients with incurable cancer,” Keating said.
Overuse of preventive drugs
New treatments and cancer advances are contributing to the trend of using futile preventive agents for comorbid conditions at the end of life, according to experts with whom HemOnc Today spoke.
“The nice part of me wants to say that we are not practicing efficient use of health care resources, but the more candid part of me wants to say that we are flat-out wasting health care resources,” Blanke said. “We have known this for decades — that a disproportionately high percentage of health care resources goes toward patients who die in the end-stage cancer setting.”
In a study published in March in Cancer, Morin and colleagues calculated the monthly use and cost of preventive medications within the last year of life among 151,201 adults (mean age, 81.3 years) in Sweden with solid tumors who died between 2007 and 2013.
The median number of preventive medications — anticoagulants, statins, platelet aggregation inhibitors and antihypertensives — administered to patients increased from 6.9 to 10.1 within the last year of life. Moreover, the average cost of medications was $1,482 per person, which included $213 for preventive medications.
“Preventive drugs commonly are prescribed during the last year of life among older adults with cancer, and often are continued until the final weeks before death,” the researchers wrote. “Adequate deprescribing strategies are warranted to reduce the burden of drugs with limited clinical benefit near the end of life.”
Understanding how comorbidities impact patient quality of life and health care costs is another area requiring improvement.
“Thirty years ago, people were not living to 100 years, but it is a common event today,” Teno told HemOnc Today. “There are a lot of people with comorbidities in this aging population. We are often not just treating a patient with incurable cancer anymore. These older patients may have chronic obstructive pulmonary disease or diabetes.”
Need for ‘better conversations’
Experts said there are multiple reasons why discussions about end-of-life care are occurring too late for patients with advanced solid tumors.
“For one, it is difficult for clinicians to be candid with patients,” Blanke said. “As providers, we are uncomfortable talking about death in general. Aside from our palliative care colleagues, we do not generally talk to our patients about death, and so the discussion often occurs at the last minute because death was not planned for efficiently.”
It also may be difficult for patients to give up the “fighter mentality.”
Temel urged clinicians to disclose upfront when a patient has incurable cancer and to prepare patients for the discussion by saying: “In light of how hard things have been for the last few months, I think it would be helpful for us to start talking about what the future might hold. Can we plan to have that discussion next visit? If you would like your family present for that discussion, please make sure to arrange the visit at a time that they can attend.”
These discussions help clinicians better understand patients’ wishes, which in turn helps to inform the development of more effective, patient-centered end-of-life care plans.
In a study published in 2018 in Journal of the National Comprehensive Cancer Network, Waller and colleagues surveyed 203 patients in the waiting room of an oncology outpatient clinic in Australia about end-of-life care discussions.
Results of the survey showed 87% of respondents stated they wanted their physician to ask them about their end-of-life care location, whereas only 7% reported actually having that conversation. Moreover, 47% of respondents stated they preferred to remain at home, while 34% stated they preferred a hospice/palliative care unit, and 19% preferred a hospital.
“We need to have better conversations with patients about what is important to them in this phase of their life, what outcomes they want to avoid, and what their treatment goals are,” Teno said. “As physicians, we need to help formulate their goals — we are not doing a good job with this. It is important to not dictate goals to them. We want end-of-life goals to be based upon the trajectory of an individual patient’s need.”
Keating agreed and said that clinicians also need to make death a “less taboo” topic.
“It is important to help patients think about what is important to them,” she said. “We are increasingly understanding the benefit of palliative care and focusing on ensuring that we do everything that we can to improve a patient’s quality of life early on in the disease course as they are still being treated for their cancer. We need to ensure that we are engaging patients and their families early on to think about what is important to them, especially as their disease progresses.” – by Jennifer Southall
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For more information:
Charles D. Blanke, MD, FACP, FASCO, can be reached at Oregon Health & Science University, 3181 SW Sam Jackson Park Road, Suite L475, Portland, OR 97239; email: firstname.lastname@example.org.
Ronald C. Chen, MD, MPH, can be reached at University of North Carolina Lineberger Comprehensive Cancer Center, 450 West Drive, Chapel Hill, NC 27599; email: email@example.com.
Nancy L. Keating, MD, can be reached at Harvard Medical School, 25 Shattuck St., Boston, MA 02115; email: firstname.lastname@example.org.
Jennifer S. Temel, MD, can be reached at Massachusetts General Hospital, 55 Fruit St., Boston, MA 02114; email: email@example.com.
Joan M. Teno, MD, MS, can be reached at Oregon Health & Science University, 3181 SW Sam Jackson Park Road, Suite L475, Portland, OR 97239; email: firstname.lastname@example.org.
Disclosures: Blanke, Chen, Keating, Temel and Teno report no relevant financial disclosures.