Abstract
Abstract
Background:
Metastatic breast cancer patients have many options for therapy and may be at risk for late or absent hospice referrals, which make meaningful improvements in symptoms and quality of life difficult to achieve.
Objective:
We aimed to examine hospice utilization, status of patients on admission, and quality of care of patients treated for metastatic breast cancer from 1999 to 2010 at a National Cancer Institute (NCI)-designated comprehensive cancer center located in Western New York.
Methods:
We conducted a retrospective database review that identified 182 patients with deaths resulting from breast cancer who were eligible for services through a local not-for-profit hospice. Patients with metastatic breast cancer were matched to the hospice database for information on hospice utilization and quality measures. Date of last chemotherapy, medication use, documentation of advance directive and palliative care discussions, and place of death were collected through chart abstraction.
Results:
One-third (33%) of metastatic breast cancer patients treated at the cancer institute during the study period died without a hospice referral. Only 7% of patients who died without a hospice referral had a documented discussion of palliative care as an option by the oncology team (p<0.001). Those patients referred to hospice were significantly more likely to have an advance directive and to die at home. Patients with a longer duration of metastatic cancer were at risk for late referral.
Conclusions:
Efforts to enhance end-of-life (EOL) discussions and earlier referral to palliative care and hospice for patients with metastatic breast cancer are critical to improved patient care.
Introduction
B
Previous studies have documented that hospice care can improve symptom management and quality of life for patients while improving bereavement outcomes and providing greater satisfaction for families. 5 Despite the described benefits, only about one-third of all dying patients in the US access hospice care, and many patients who enroll are referred very late in the course of their illness, preventing them from receiving most of the benefits of hospice care and support. 6 Published reports have documented that patients primarily cared for by an oncologist in the last month of life are more likely than those cared for by other physicians to be treated late with chemotherapy, and to be admitted to hospice care. However, they were also more likely to wait to initiate hospice care until 3 days or less prior to death. 7 Although teaching hospitals are associated with greater overall use of hospice, receiving care in a teaching hospital also predicts delivery of more aggressive care near EOL. 8
The literature on the degree of palliative care and hospice involvement in the advanced breast cancer population is limited. A previous study of more than 2000 women with metastatic breast cancer in Quebec found that only 6.9% of women died at home, whereas nearly 70% died in acute care beds. Additionally, most women (75%) had few indicators of the provision of palliative care in the last 6 months of life, with younger women (<50 years) even less likely to receive such care when compared with older women. 9 Another study of women with advanced breast cancer found that although 37% of patients enrolled in hospice care prior to death, 41% enrolled within 2 weeks of death. 10 Metastatic breast cancer can involve virtually any organ and the symptom burden of the disease at the EOL is often substantial, 11 making the appropriate utilization of palliative care and hospice services of great importance.
The purpose of the current study was to examine hospice utilization, medical status of patients at the time of hospice admission, and EOL quality performance indicators among patients treated for metastatic breast cancer at a comprehensive cancer center.
Methods
Eligibility
This study included all women treated for metastatic breast cancer at Roswell Park Cancer Institute (RPCI), a National Cancer Institute (NCI)-designated comprehensive cancer center, who were eligible for services through the Center for Hospice and Palliative Care in Buffalo (Hospice Buffalo), NY from January 1999 to December 2010. New York State is a Certificate of Need state, making Hospice Buffalo the sole provider of hospice services in Erie County, a population area of approximately 920,000 residents. 12 Services are available to patients who reside within the county, whether in their own home, a family member's home, nursing home, or other residential facility.
RPCI database
Eligible women with metastatic breast cancer were identified through the RPCI breast program database. Data include demographics, comorbid conditions, cancer type, pathology and biomarker data, staging, diagnostic and treatment data, and outcomes, including date of death. The data extracted were supplemented by medical record review to obtain details of medication and chemotherapy use, as well as documentation of discussions of EOL options and advance directives. This retrospective chart review study was approved by the RPCI Institutional Review Board.
Center for Hospice and Palliative Care (Hospice Buffalo), Buffalo, NY database
Patients with metastatic breast cancer were cross-matched to the Hospice Buffalo database to identify eligible patients who received hospice care. The database includes demographic information, primary diagnoses, comorbidities, advanced directives, and initial and ongoing assessments of symptoms and psychosocial and spiritual issues. Location and date of death as well as length of stay (LOS) are also recorded. The database is used by nurses, physicians, and other members of the hospice interdisciplinary team to document all patient and family encounters.
Study design
Analysis of breast cancer patients extracted from the RPCI breast cancer database identified 182 patients with deaths resulting from breast cancer who were eligible for services through Hospice Buffalo during the time period from January 1999 to December 2010, prior to the passage of the New York State Palliative Care Information Act, which requires clinicians to offer terminally ill patients information concerning palliative care and EOL options. 13 Date of administration of last chemotherapy, opiate and anxiolytic use on admission, and documentation of advance directive and palliative care discussions prior to hospice admission were extracted from the RPCI database. In addition, details on patients' cancer and treatment were also collected (tumor grade, estrogen receptor [ER], progesterone receptor [PR], HER2 status, and duration of survival with metastatic disease). The database information was supplemented by medical record review to obtain details of medication and chemotherapy use. Patient status on admission to hospice was abstracted from the Hospice Buffalo medical records system and included any additional demographics, Palliative Performance Scale (PPS) 14 score, and baseline symptom assessment of pain, delirium, anxiety, appetite, dyspnea, nausea, and weakness/fatigue. LOS and place of death were also noted. The PPS is a functional assessment percentage score based on ambulation, activity level and evidence of disease, self-care, intake, and level of consciousness. Symptom assessments were based on the Edmonton Symptom Assessment System (ESAS), 15 a standard assessment tool widely used in palliative care.
Statistical analysis
The primary objective of the study was to characterize hospice utilization among metastatic breast cancer patients at RPCI. Descriptive statistics of the baseline characteristics and outcomes were obtained. Comparisons between hospice and nonhospice groups were analyzed by the Pearson's χ2 and Fisher's exact tests, where appropriate. Kaplan-Meier methods were used to estimate survival distributions, and were compared by the log-rank test. Cox proportional hazards regression analysis was applied for the selection of the potential significant variables contributing to survival such as ER status, HER2 status, SBR grade 3, duration of metastasis, and PPS ≥50. All statistical tests were two-sided, with p<0.05 considered statistically significant. Statistical analyses were performed using SAS statistical software, version 9.3 or higher (SAS Institute, Inc., Cary, NC) and Statistical Package for the Social Sciences (SPSS) software version 18.0 for Mac (SPSS, Inc., Chicago, IL).
Results
Sample characteristics
There were 182 patients eligible for Hospice Buffalo services who expired during the study period. One hundred twenty-two eligible patients (67%) utilized hospice services; 60 (33%) did not. Table 1 displays socioeconomic characteristics. The average age of all patients at the time of death from metastatic breast cancer was 56 years (range 27–96 years). Thehe average age of patients enrolled in hospice was 55 (range 30–91 years) and of nonhospice patients it was 58 (range 27–96 years). Of the patients 134 (74%) were white; 44 (24%) were African American. Of those who identified a religious affiliation, 61 (49%) were Catholic; 47 (38%) were Protestant. The highest educational level attained was college or above in 31 patients (19%), less than a college degree in 103 (62%), and less than a high school degree in 31 (19%).
MBC, metastatic breast cancer.
Patient status on hospice admission
Table 2 displays data gathered on admission to Hospice Buffalo. One hundred twenty-two eligible patients enrolled in hospice care. Sixty patients (56%) were nonmarried at the time of admission, 47 (44%) were married, and data were missing on 17. The majority of patients on whom data were available did not have dependent children at the time of admission. PPS score on admission was 10 to 20 in 12 patients (11%), 30 to 40 in 63 (59%), 50 to 60 in 32 (30%), >60 in 0 (0%), and missing in 15. Median LOS in hospice was 17 days (range 0–746 days). Symptoms reported on admission to hospice are displayed in Table 2.
ESAS, Edmonton Symptom Assessment System.
Outcomes: Hospice versus nonhospice patients
Details are displayed in Table 3 for hospice versus nonhospice patients. Only 40 (22%) of patients with metastatic breast cancer had an advance directive discussion documented in the medical record prior to their admission to hospice. Those admitted to hospice were significantly more likely (p<0.001) to have documentation of an advance directive discussion with the oncology team. Only 3 (5%) of the 60 patients who expired without hospice services had any documentation of an advance directive discussion with the oncology team prior to death. Similarly, only 4 (7%) of the patients who died without a hospice referral had a documented discussion of palliative care as a therapeutic option by the oncology team (p<0.001). Of patients who enrolled in hospice over the study period, 100% (122) had this option discussed with them by the oncology team. There were no significant differences in the rates of opiate use (long or short acting) or anxiolytic use between the groups at the time of hospice admission.
DNR, do not resuscitate.
Patients enrolled in hospice care were significantly more likely to die at home: 63 (56%) versus 2 (8%, p<0.001), and were less likely to die in a hospital setting.
Breast cancer and treatment characteristics and hospice LOS
Breast cancer characteristics such as ER positivity, HER2 positivity, and high grade (Scarff-Bloom-Richardson [SBR] 3) did not impact the LOS in hospice care. However, patients with a better performance status on admission (PPS ≥50) were significantly more likely to have a longer stay in hospice care (p=0.001) than those with poorer PPS. Patients with a longer duration of metastatic disease were at risk for a shorter hospice LOS on multivariate analysis: hazard rate 1.01 (95% confidence interval [CI] 1.00-1.03, p=0.002). Details are displayed in Table 4.
ER, estrogen receptor; PPS, Palliative Performance Scale.
Patients enrolled in Hospice services had a median of 31 days between the last administration of chemotherapy and death, whereas those not enrolled had a median survival of 16 days following the last administration of chemotherapy, although this was not statistically significant (p=0.071).
Discussion
Timely hospice referral is a crucial factor in providing high quality EOL care for patients with metastatic breast cancer. Early referral to hospice and palliative care services allows for early assessment and management of physical and psychosocial distress as well as advance directive discussion and is increasingly recognized as the standard of care. 16 This study examined patient characteristics and hospice utilization, patient status and symptom burden on hospice admission, the documentation of hospice options and advanced directives by the primary oncology team, disease characteristics, and LOS in hospice.
Although we did not find a difference in many patient characteristics examined, our study demonstrates a significant difference in outcomes for patients exposed to hospice discussions by the oncology team. Patients who did not have a discussion of hospice and palliative care with their oncology providers were significantly more likely to die in an acute care setting and significantly less likely to have advance directives, whereas those patients whose providers engaged in hospice discussions were significantly more likely to die at home. This finding is particularly important as previous work has determined that most Americans (70%) wish to die at home, although only one-third did so in 2009. 17 Importantly, all of the patients subsequently enrolled in hospice had a documented discussion about palliative care with their oncology team, demonstrating the influence that oncologist-initiated discussion has on subsequent care of the patient.
Although national guidelines recommend that discussions about EOL care occur soon after diagnosis for patients with incurable cancer, 18 evidence consistently shows that oncologists can be reluctant to engage in these discussions. Oncology providers often find it difficult to discuss prognosis and EOL issues with patients, with previous studies documenting that many physicians do not discuss advance directives or prognosis with terminally ill patients while the patient still feels well, and instead wait for the exhaustion of therapies or onset of symptoms for these discussions. 19 Some breast cancer patients may pursue this information without the help of their oncology providers. In a sample of women with metastatic breast cancer from two academic medical centers in the United States, the vast majority had gathered information about (75%) or had written (66%) advanced directives. However, only 14% shared this information with their oncology team, and patients were more than three times as likely to talk with family and friends than with oncology providers. 20 In our study, only 3 of 60 patients (5%) who did not utilize hospice had an advance directive discussion documented with the oncology team, and only 7% had a documented discussion of palliative care as an option prior to their death.
The data supporting the importance of these discussions are growing. In a large prospective cohort study of 1231 stage IV lung and colorectal patients, Mack et al. reported that those who had EOL discussions with their physicians before the last 30 days of life were significantly less likely to receive aggressive measures at the EOL. 21 The administration of chemotherapy in the last 14 days of life as well as hospitalization over the last month of life both decreased by more than one-half (HR 0.41, 95% CI 0.25-0.66 and HR 0.43, 95% CI 0.29-0.65, respectively). These patients were also more likely to receive hospice care (p<0.001) and to have hospice care initiated earlier (p<0.001). Similarly, Wright et al. reported that EOL discussions are associated with less aggressive medical care near death and earlier hospice referrals, which led to significantly improved patient quality of life and better caregiver quality of life and bereavement adjustment at 6.5 month follow-up. 22 The American Society of Clinical Oncology has endorsed the early use of palliative care services as part of standard oncological care for patients with advanced disease or high symptom burden. 23 In this study, the patients demonstrated a high symptom burden at the time of referral, reporting significant levels of pain, fatigue, and delirium (Table 2). Unsurprisingly, the 30% of patients referred with a PPS of 50% or better did have a longer LOS. No patients were referred with a PPS of 60% or greater. The early integration of palliative care services and its effect on EOL discussions and the subsequent care of metastatic breast cancer patients is unclear, and warrants further investigation.
Metastatic breast cancer patients have available available therapies and an increasing number of targeted therapies for treatment. Although cure remains impossible for most, a significant number survive at least 5 years with treatment. This study attempted to examine several tumor-specific characteristics and impact on hospice LOS. The tumor characteristics studied (high tumor grade, ER/PR or HER2 positivity) did not impact the LOS in hospice. We hypothesized that the patients who experienced a prolonged disease course would have more time for discussion with the team about EOL issues and acceptance of prognosis when compared when patients with aggressive and/or refractory disease, leading to earlier hospice referral. Interestingly, patients with a longer duration of metastatic disease were at risk for a shorter hospice LOS on multivariate analysis. The reasons for this observation are unclear, but may reflect an increased willingness on both the oncologist's and patient's part to try additional therapies given past responses. Further study to better understand the effect of prolonged survival with metastatic cancer on implementation of appropriate EOL discussions and care is warranted.
Limitations of this study include small patient numbers and its retrospective nature. It is not possible to account for the quality of conversations and documentation in the medical record. It is unclear how many conversations with the oncology team might have taken place but were not documented. Our results nevertheless support the importance of hospice discussions with the oncology team.
In the current model of cancer care, oncologists often serve as the key gatekeeper for palliative care and hospice referrals. In a recently published survey of oncologists, most did have access to specialized palliative care services and did refer. However, consistent with previous studies, most oncologists referred patients late in the disease course. 16 The harms associated with late referrals may not always be considered by clinicians but are well-documented. In a study comparing the integration of early palliative care for metastatic non-small cell lung cancer (NSCLC) patients, those included in the standard of care arm (no referral) had a higher incidence of aggressive EOL cancer care, defined as chemotherapy within 14 days of death, no hospice care, or admission to hospice within 3 days of death. 24 Although different malignancies have differing disease trajectories and patient care needs, in our series of breast cancer patients from a comprehensive cancer center, the median LOS in hospice care was 17 days (the national median: 19 days 25 ), and 14% of patients were admitted within 3 days of death. Although the differences between the groups were not statistically significant, the patients in this series who were not referred to hospice received their last dose of chemotherapy an average of 16 days prior to their death, compared with 31 days for the referred patients. Whereas the identification of the point in the disease course at which the cancer is clearly “life-threatening, incurable, or progressive” may be more intuitive for other solid tumors than for breast cancer due to its variable clinical course and numerous available treatment options, there do exist disease-specific guidelines for the integration of palliative care into comprehensive breast cancer therapy. 2 In New York State, the Palliative Care Information Act was passed into law in early 2011. 13 This act requires physicians and nurse practitioners to offer terminally ill patients information concerning palliative care and EOL options. The time frame of this study ended in 2010, prior to the passage of the Palliative Care Information Act. Further studies are planned examining the effect of this law on our patient population. Beyond the development of laws and guidelines, it is clear that additional developments are necessary to ensure adequate education and support of cancer patients and their oncology teams to facilitate timely referral.
Footnotes
Author Disclosure Statement
No competing financial interests exist.
