Improving Palliative Care for Patients With Metastatic Breast Cancer

Kate M. O'Rourke


June 14, 2019

In the past decade, studies have demonstrated that in patients with a variety of cancers, telephone-based and in-person palliative care interventions improve quality of life, reduce symptom burden, improve survival, and reduce healthcare costs.[1,2,3,4] Although strides have been made to improve palliative care for metastatic breast cancer (MBC), palliative care is still underused.[5,6,7,8,9,10] Palliative care is one of the fastest-growing subspecialties in the past decade, but demand for palliative care specialists is still outstripping the supply and oncologists are still failing to reach out to available resources.[10]

According to Michael Rabow, MD, director of the Symptom Management Service and medical director of palliative care at the Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco (UCSF), the key to increasing palliative care is to incorporate it into the routine practice of breast cancer care. "Make it automatic, expected, and a routine part of excellent breast cancer care," said Rabow.

Variable Benefits

The natural history of breast cancer is variable. Aggressive subtypes, such as triple-negative breast cancer, may lead to death within a few months or years, whereas patients with hormone receptor–positive and HER2-overexpressed MBC will have a prolonged course of illness.[6] Approximately 5%-10% of patients with newly diagnosed breast cancer have metastatic disease, and of these, approximately one fifth will survive for 5 years.[6]

Jennifer Shin, MD, a palliative care physician and breast oncologist at Massachusetts General Hospital in Boston, said the variable survival for advanced breast cancer is one barrier to incorporating palliative care for this population. "When the landscape for some patients with metastatic breast cancer can be years, it is tricky to figure out how to best incorporate palliative care," said Shin.

The most common physical symptoms in patients with advanced breast cancer are pain, including back pain and iatrogenic chronic pain; dyspnea; fatigue; delirium; and confusion.[6] Anxiety, depression, and existential suffering are the most common psychological symptoms.[6] "Chemobrain and sexuality issues are often key concerns and are unfortunately understudied and not well-understood," said Rabow. Fungating chest wall tumors, brain metastases, and leptomeningeal metastases are also challenging palliative care problems.[6]

The landmark study that brought international attention to the value of palliative care for patients with cancer was published in 2010 by Temel and colleagues.[1] The study was conducted in patients with metastatic non-small cell lung cancer and demonstrated that palliative care increased survival by almost 3 months, improved quality of life, and reduced depressive symptoms.[1] Other studies in patients with various cancers have demonstrated that palliative care can reduce physical, psychological, and spiritual suffering; improve quality of life; prolong survival; and lower costs for healthcare systems.[10] A study involving roughly 1000 patients with various cancers, with 30% receiving palliative care, found that direct costs of inpatient care in the last 6 months of life for patients with early palliative care were lower compared with late palliative care ($19,067 vs $25,754; P < .01). Another study examining all discharges from a large tertiary cancer hospital showed that 30-day readmissions were lower when a palliative care consultation was combined with hospice discharge, compared with usual care or consultation with discharge to nonhospice postacute care.[11]

In part on the basis of Temel and colleagues' data, the American Society of Clinical Oncology (ASCO) recommended that all patients with metastatic disease should begin receiving concurrent palliative care along with their cancer treatment within 8 weeks of diagnosis.[12] Guidelines from ASCO, the American College of Surgeons, and the National Comprehensive Cancer Network provide recommendations for the screening, assessment, and management of palliative care needs with cancer.[12,13,14]

Palliative Care Services Are Underutilized

Despite recommendations that early palliative care be offered to all patients with metastatic cancer, these services are underutilized, and patients with MBC are commonly admitted for uncontrolled symptoms.[15,16] Arif Kamal, MD, MBA, MHS, associate professor of medicine, population health sciences, and business administration at Duke University, Durham, North Carolina, said breast cancer clinicians were not quick to respond to Temel and colleagues' study, in large part because the study was specific to thoracic oncology, had a small sample size, and was conducted at a single tertiary care center.

"There have been subsequent studies, but sample sizes are relatively small and involve a single institution or small network of institutions," said Kamal. "Patients with breast cancer have not been the majority of any patient population included in any randomized controlled trial about palliative care integration."

Although no clear data exist as to how frequently palliative care is used by breast cancer clinicians, in a study conducted at UCSF, 20% of patients with MBC were referred for palliative care and only half were seen by a palliative care physician.[7] In a study of 123 consecutive patients who were hospitalized for the first time with a diagnosis of MBC at a single tertiary care center, an inpatient palliative care team evaluated 57%, but only 17% attended an outpatient palliative care appointment.[16]

"At UCSF, most oncology practices have about 10% of their patients seen in palliative care," said Rabow. "My sense is that 20% of patients with serious illness should receive specialty palliative care (palliative care specialist physicians, nurses, social workers, and chaplains), and the other 80% should be getting generalist palliative care or 'primary palliative care,' the basics in symptom management and good communication about goals of care that all clinicians should be able to provide."

There is evidence that palliative care is improving slowly for patients with breast cancer. The first clinic in the United States devoted exclusively to patients with metastatic disease, the Koontz Center for Advanced Breast Cancer in Kansas City, Missouri, opened in 2017 and has a focus on palliative care.[17] Numerous clinical trials evaluating palliative care are ongoing at Massachusetts General Hospital and other institutions.[18,19,20,21]

According to Matthew Loscalzo, LCSW, executive director of the Department of Supportive Care Medicine at City of Hope, Duarte, California, palliative care is used less frequently in breast cancer than other cancers, such as lung and gastrointestinal cancers, because patients with breast cancer are often followed for longer periods and clinicians are hesitant to hand their patients off. "There is great resistance on the part of treating physicians to say now, we are handing you off to palliative care," said Loscalzo. "Patients feel that they are being dumped, and patients respond very negatively to that, as do physicians." If patients are introduced to palliative care earlier, he said, the outcomes and transition to palliative care is much, much easier.

Loscalzo said that patients with breast cancer get referred to palliative care more for psychosocial problems than physical issues and when issues are very complex. "Anxiety is the biggest psychosocial problem," said Loscalzo. Pain is another big referral trigger for palliative care. In a cohort of patients with cancer at a safety net hospital, 20% of whom had breast cancer, markers of pain, advanced disease, and poor prognosis were associated with placement of inpatient palliative care consult orders.[22]

Barriers to Incorporation

Loscalzo believes that the biggest barrier to incorporating palliative care for patients with cancer is the lack of comprehensive biopsychosocial screening, getting to know people and asking them not what is the matter with them, but what matters to them. "This should be done in an automated fashion, during the first or second visit, asking comprehensive questions not only about physical symptoms but also psychological issues, such as substance abuse and feeling that they are not supported by their families, especially by their partners," said Loscalzo.

At City of Hope, patients are presented with SupportScreen, a touch screen to gather information. Patients are asked what problems are most concerning and how they would like their healthcare team to work with them. They are asked about physical symptoms, such as pain management; about family life issues; and about their interest in clinical trials or classes. "All of this is automated and goes into the medical record, and you know the issues from day one," said Loscalzo. "Oncologists have so little time with patients that unless we automate some of this hard stuff, the clinical encounter cannot be all that it can be." Studies have demonstrated that electronic goals of care alerts can increase palliative care.[23]

A recent study demonstrated that although both primary care clinicians and oncologists discuss symptom management, medical understanding. and treatment decision-making with patients with advanced cancer at nearly all postprogression visits, primary care clinicians assess patient understanding of the treatment process and prognosis, patient coping, caregiver experiences and needs, and advanced care planning more frequently than oncologists.[24]

According to Loscalzo, engaging a patient's partner is key. "All of these health systems are highly focused on the patient, but the patient lives in a universe of people, of friends, of family," Loscalzo said. "The healthcare system is ill-equipped to integrate the strongest and most important resource: the partner and family."

Another barrier to receipt of palliative care is stigma. "We have known for many years, and research has shown, that physicians, nurses, patients, and families see palliative care as end-of-life care," said Loscalzo. "Patients are fearful to being referred to palliative care. The palliative care subspecialty needs to be much clearer as to what they do in their language."

Rabow agreed. "This stigma has been hard to get over. Most patients, once they have begun palliative care, wished they had started it earlier," he said. "If palliative care were a drug with the kind of data it has behind it, it would have been immediately and widely incorporated into routine care in 2010, when Temel and colleagues' study was published."

Rabow said that underprioritizing patients with breast cancer for palliative care is another problem. "Patients with breast cancer may not be seen as the ones with the highest need compared with patients with lung cancer, potentially because of differences in survival or outcome, if you are going to prioritize a patient population for whom you are requesting referrals," he said. He said it will take time for stakeholders to recognize that patients have really serious needs from the time of diagnosis, even if they have highly curable breast cancer.

Another barrier to providing palliative care is a shortage of palliative care specialists. Kamal said it is difficult for small or medium-sized cancer centers to provide palliative care services. Oncologists can learn basic primary palliative care skills to help them approach patients, but this is not really an answer, because there is a shortage of oncologists.[25,26,27]

Studies have demonstrated that telemedicine and remote monitoring can help with the shortage of palliative care specialists.[28,29] "We have to recognize that there is a shortage of palliative care physicians, nurses, and social workers, and there is a shortage of those people who work in cancer," said Loscalzo. "We really have to up our game and train more people in palliative care and supportive care across all disciplines."

Kamal said that palliative care clinicians have to do a better job explaining to patients and referring clinicians what they can do for patients with breast cancer specifically. "Not everyone knows that they need [palliative care] until you can be specific," said Kamal.

Shin agreed. "Oncology teams need to be better informed about what the benefits of palliative care are and share that with patients," she said. "As the body of evidence grows that palliative care can be very helpful for patients with advanced cancer, the acceptance on the part of oncologists has been growing and continues to grow."

Dr Kamal, Dr Rabow, and Dr Shin have disclosed no relevant financial relationships. Loscalzo is a consultant from AstraZeneca and receives royalties for SupportScreen.

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