Whose End of Life Is It, Anyway?

How Oncologists' Attitudes Affect End-of-Life Care

Roxanne Nelson, BSN, RN


August 10, 2015

Editor's Note: End-of-life discussions are difficult for both the patient and the oncologist, especially when making treatment decisions. But the care provided to patients with advanced-stage cancer does not always correlate with their preferences, and many are hospitalized or treated aggressively even in the absence of any benefit. Recent studies show that the attitudes of oncologists play a key role in helping—or hindering—patients with advanced cancer to make decisions concerning their end-of-life care. Drawing upon recent publications and presentations at the annual meeting of the American Society of Clinical Oncology (ASCO), this article takes a candid look at how oncologists can ensure that the care that patients receive at the end of life is the care they want.

Patients Receive Aggressive Care in Last Weeks of Life

Caring for patients near the end of life is an integral part of oncology practice, and it's not surprising that making healthcare decisions about appropriate or preferred care can be emotionally and psychologically distressing for patients with advanced cancer. Both oncologists and patients may delay or even avoid planning for end of life,[1] even though current guidelines recommend that these discussions take place early in the disease trajectory.[2]

But a significant proportion of patients with advanced cancer receive intensive medical therapy in the last weeks or even days of life. Physicians play a large role in making decisions about end-of-life care, and several studies have recently examined that relationship.

In one study that looked at over 1200 patients with stage IV lung or colorectal cancer who participated in the Cancer Care Outcomes Research and Surveillance Consortium, nearly half had received some type of aggressive end-of-life care.[1] This included chemotherapy in the last 14 days of life (16%), care in the intensive care unit in the last 30 days of life (9%), and acute hospital-based care in the last 30 days of life (40%).

In contrast, patients who had earlier discussions about end-of-life care were less likely to receive aggressive care, and the use of these interventions was much less frequent when discussions took place at any time before the last 30 days of life. The odds of entering hospice were nearly twice as high.

Another paper recently published in Health Affairs found that physician characteristics were the strongest predictor of whether a patient will be referred to hospice care.[3] This outweighed other known drivers such as geographic location, patient age, race, gender, and comorbidities.

Physicians need to take responsibility for asking patients about their preferences and informing them about options.

"We found that the physician a patient sees is the single most important predictor of whether that patient enrolls in hospice care," said lead author Ziad Obermeyer, MD, a physician-researcher in the department of emergency medicine at Brigham and Women's Hospital and an assistant professor of emergency medicine at Harvard Medical School, in Boston. "The take-home message is that doctors matter in their patients' choices regarding end-of-life care," he told Medscape. "Physicians need to take responsibility for asking patients about their preferences and informing them about options."

Oncologists' Attitudes Affect End-of-Life Care

Do the attitudes and perceptions of oncologists influence care at end of life? A study presented at ASCO 2015 found that there were significant variations in the attitudes and beliefs toward end-of-life care among different oncology specialties.[4] Hematologic oncologists tended to be more willing to recommend systemic therapy for patients with advanced disease in their last month of life as compared with solid tumor specialists.

Hematologic oncologists were also more likely to report a sense of failure when they were unable to change the course of the disease, and were less comfortable than their colleagues with certain aspects of end-of-life care, such as discussing death and dying and referring patients to hospice care.

"Our group and others have previously reported that patients with hematologic malignancies were much more likely to receive aggressive treatment at the end of life compared with patients with advanced solid tumors, and that made us wonder why that was," said lead author David Hui, MD, assistant professor in the Department of Palliative Care and Rehabilitation Medicine at the University of Texas MD Anderson Cancer Center, Houston.

There were many unanswered questions, he told Medscape in an interview. "Is it because the oncologist perceived the patient as living much longer? Is it because the oncologist knew that the side effects are lower than those for solid tumors? Did they feel that the benefits were much better? Or is because it is a cultural sort of thing, that they feel more comfortable giving chemotherapy?"

The study was conducted at MD Anderson Cancer Center, and study participants were medical oncologists or mid-level providers (ie, advanced nurse practitioners or physician assistants) who cared for patients with either hematologic malignancies or solid tumors. Those who provided care to both categories of cancer patients were excluded.

Dr Hui and colleagues randomly surveyed 120 hematologic and 120 solid tumor oncology specialists at MD Anderson, and respondents were asked to complete a survey that examined various aspects of end-of-life care. Specifically, they gave respondents three case vignettes, which had been adapted from a previous study examining cancer treatment decisions, to determine their decision-making preferences for palliative systemic therapy.

"In real life there are so many variables to control for," said Dr Hui. "But by giving them a treatment vignette, we give them all the information about the patient and situation and that's it. This way, if there is any variation, it is due to the oncologist's own culture or personal experience or preference."

Both groups of practitioners reported a median of 10 years of experience in practice, but few had received any formal palliative care training; 52% of the hematologic practitioners and 39% of the solid tumor practitioners had received no training at all.

Hematologic specialists were more likely than those treating solid tumors to favor using systemic cancer therapy in patients with ECOG performance status (PS) of 4 and an expected survival of 1 month.

Hematologic Oncologists Less Comfortable Discussing Dying, Study Finds

Overall, the majority (>80%) of providers in both the solid tumor and hematologic groups stated that they were comfortable with managing symptoms, providing counseling to patients, and discussing prognosis and advance care planning. They also reported having a close relationship with patients and their families.

However, specialists in hematologic malignancies reported being less comfortable when discussing death and dying with their patients (72% vs 88%; P = .007) as well as referring patients to hospice (81% vs 93%; P = .02).

They were also more likely to report feeling a sense of failure when they were unable to do anything to alter the course of disease (46% vs 31%; P = .04). Hematologists were less likely than their colleagues treating patients with solid tumors to report deriving satisfaction in providing end-of-life care to dying patients (56% vs 69%; P = .08).

"I think it comes down to a very personal comfort level," Dr Hui said, "rather than believing that the treatment is going to improve the outcome. This survey scratched the surface in trying to understand the psychology of the oncologists in treatment decisions."

We found that oncologists' attitude and beliefs have a very strong role in deciding whether they will recommend treatment or not.

"Hematologic cancers do have a higher chance of cure compared with solid tumors, even in advanced cases, so that could be a factor, and there are a large number of therapies available, so that could also be a driver," he explained.

"We found that oncologists' attitude and beliefs have a very strong role in deciding whether they will recommend treatment or not, and if they recommend it, the patients will usually agree to it," Dr Hui added.

A Japanese study[5] whose abstract was submitted at the ASCO meeting also found that medical oncologists' own perceptions and beliefs can influence their attitude towards end-of-life care.

Masanori Mori, MD, from Seirei Hamamatsu General Hospital, Hamamatsu, Japan, and colleagues from several Japanese cancer centers, conducted a nationwide survey of 490 medical oncologists on end-of-life issues regarding prognosis, hospice, preferred site of death, and do-not-resuscitate (DNR) status with advanced cancer patients.

They found that 34% of oncologists would discuss prognosis, 14% would discuss hospice, 9.8% would discuss preferred site of death, and 4.2% would discuss DNR status.

In multivariate analyses, they also found that determinants of discussions of prognosis at diagnosis included being a hematologist (odds ratio [OR], 1.68; P = .016), more physician-perceived importance of patient autonomy in care preferences (OR, 1.34; P = .014), and less physician-perceived difficulty estimating the prognosis (OR, 0.77; P = .012).

Determinants of discussing hospice at diagnosis included not having the responsibility of being the treating physician at end of life (OR, 1.94; P = .031), more physician-perceived importance of life completion (OR, 1.58; P = .018), and less discomfort talking about death (OR, 0.67; P = .002).

The authors concluded that it may prove helpful for medical oncologists to recognize that their own perceptions and beliefs can delay end-of-life discussions with patients and extend aggressive care. Presumably, attitudes such as discomfort in talking about death may hamper the ability of patients to receive end-of-life care that aligns with their preferences.

Communication Improves End-of-Life Care

What if the patient nearing the end of life wants to continue treatment? That is just one of the issues that oncologists face when having to make treatment decisions for patients who seemingly are approaching the end of life.

"There are new challenges in the decision to stop chemotherapy, in the era of new treatments," said Jennifer S. Temel, MD, clinical director of thoracic oncology at Massachusetts General Hospital in Boston. "Sometimes there are new and exciting treatments available that might be able to help the patient live longer and better."

She pointed out, during an educational symposium at the ASCO meeting, that cancer therapies are becoming more effective and less toxic, and that newer therapies may be effective even for patients with poorer functional and performance status.[6]

"It's unclear whether the old adage of 'no chemotherapy for ECOG performance status of ≥ 3' still holds true for some of these newer therapies that are becoming available," Dr Temel told attendees.

But patients who receive chemotherapy are more likely to receive additional aggressive methods and poorer quality end-of-life care. "Chemotherapy at the end of life is somewhat of an indicator of further aggressive care," Dr Temel said.

However, in this era of rapidly evolving technology and therapies, patients who appear to be at the end of life can sometimes do a complete about-face. To illustrate this point, Dr Temel recounted several case studies, one being a 51-year-old woman who had first presented with brain metastases in 2006 at age 42. Between 2006 and 2009 she underwent surgery and radiation, and after it was discovered that she harbored an ALK mutation, she was treated with crizotinib [Xalkori®] from 2010 to 2014. At that time she developed progressive brain metastases and leptomeningeal disease.

The patient was subsequently enrolled in a trial of alectinib, an investigational ALK inhibitor, which required her to halt crizotinib for 7 days. When she returned to the clinic after 7 days to begin the trial, her condition had deteriorated dramatically. The woman had cognitive changes, was incontinent, and was in pain.

"She was basically dying," said Dr Temel. "Her PS was 4, and she was incoherent. She probably would have died within a few days."

But within 3 days of starting the investigational drug she was completely back to normal and within 5 days she was back to work full-time. "This is an example of giving chemotherapy at the end of life that prolonged survival and improved her life," Dr Temel pointed out.

Physicians have always struggled with balancing the possible harms with potential benefits of treatment, and the availability of well-tolerated and effective novel therapies has made that evaluation even harder.

Chemotherapy at the end of life is one of many downstream effects of poor communication.

But these therapies are not the problem; the problem is communication, she emphasized.

"We often defer discussions with patients about prognosis, treatment, and end-of-life care, and chemotherapy at the end of life is one of many downstream effects of poor communication," said Dr Temel. "Patients who have not engaged in end-of-life discussions with their clinicians are more likely to receive aggressive care at the end of life, including chemotherapy administration, CPR, and late referrals for hospice. Enhancing patient-clinician communication is an effective strategy to improve the delivery of end-of-life care."


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