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Reconsidering Quality End-of-Life Care Standards for Women with Metastatic Breast Cancer Utilizing the Patient and Family Experience

Brazee, Rachel L. (2022) Reconsidering Quality End-of-Life Care Standards for Women with Metastatic Breast Cancer Utilizing the Patient and Family Experience. Doctoral Dissertation, University of Pittsburgh. (Unpublished)

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Background: It is estimated that nearly one third of the 3.5 million women in the United States with a history of breast cancer will develop metastatic disease. The median survival time for metastatic breast cancer (MBC) is between 24-52 months, with only 20% surviving 5 years or more (Laohavinij et al., 2017; Mariotto et al., 2017a; Miller et al., 2016; Santa-Maria & Gradishar, 2015). This variability in survival time and treatment course can be attributed to an array of factors such as MBC disease subtypes, socioeconomic influences, provider differences, and patient and family preferences (Andre et al., 2004; Cleeland et al., 2014; Goldhirsch et al., 2011; Lobbezoo et al., 2013; Mosher et al., 2013; Reed et al., 2012; Sotiriou et al., 2003; Sperduto et al., 2012). Disease heterogeneity results in multiple therapeutic options prescribed sequentially through a progressive, life ending course of illness. Aggressive therapy until the end-of-life (EOL) is the new treatment paradigm for many metastatic cancers. Because some therapies do prolong life, it can be challenging for clinicians and patients to know when sequential treatments for progressive cancers, and specifically MBC, becomes futile and poses a risk for poor quality of EOL care for patients and a poor death experience for their families (Andre et al., 2004; Cleeland et al., 2014; Haun et al., 2017; Mosher et al., 2013; Park et al., 2018; Reed et al., 2012; Sorensen et al., 2012). While quality standards are established for EOL care, it is not clear that these standards are in accordance with the expectations or wishes of patients and families accustomed to this new highly aggressive treatment paradigm (Earle et al., 2003; Emanuel & Emanuel, 1998; Ferrell et al., 2017).
Purpose: The purpose of this study will be to comprehensively assess the current quality of EOL care in women diagnosed with and deceased from MBC.
Specific Aims: The proposed study will examine EOL care through four specific aims:
1) Perform a retrospective chart review of demographic, social, patient health, clinical, supportive care, social work, advance directives, goals of care discussions, and EOL care indicators of deceased MBC patients to assess for EOL quality care;
2) For women deceased from MBC, determine the designated personal representative’s (DPR) assessment of the quality of EOL care and death experience via the Quality of Death and Dying Questionnaire (QODD);
3) Explore the DPRs own, and their perception of the patients, view of EOL care and death quality through a qualitative telephone interview; and
4) Integrate the findings from Aims 1,2, and 3 in order to present to key stakeholders a comprehensive description of 1) current MBC EOL care quality and 2) a suggested protocol and implementation plan for best practices to achieve optimal EOL quality. The final protocol will also consider any key stakeholders feedback received.

Specific Aim 1 – Through a protocolized and verified chart review, assess demographic factors (age at MBC diagnosis, age at death, race, sex), social factors (spiritual affiliation, neighborhood deprivation score derived from zip code, and marital, employment, and insurance status), patient health factors (mental health comorbidities, physical comorbidities), clinical factors (tumor type: estrogen receptor (ER+/-) and/or Human Epidermal Growth Factor Receptor 2 (HER2) status, length of survival), supportive care factors (palliative care [presence], social work [presence], advance directives [presence], and goals of care discussions [if occurred, length of time prior to death, times occurred], and EOL care indicators (hospice care [presence, length of time], place of death, Intensive Care Unit (ICU) admission 30 days or less prior to death, new chemotherapy in the last 30 days of life, any chemotherapy in the last 14 days of life, more than one Emergency Room (ER) visit in the last 30 days of life, and more than one hospital admission in the last 30 days of life) of MBC patients. Through descriptive, comparative, and correlative statistics, this aim will provide predictor variables for patients at risk for poor life quality at the EOL and death experience.
Specific Aim 2 – The perceived quality of the death experience for women deceased from MBC, through the perception of the DPR, will be described. The cohort will be recruited from a large university healthcare system in southwest Pennsylvania, a local Pittsburgh cancer care support group, and nationwide social media platforms with an MBC emphasis. The QODD questionnaire on a Qualtrics platform will be utilized. Descriptive, comparative, and correlative statistics will be utilized for analysis.
Specific Aim 3 – Using a mixed method design at the survey completion; participants will then indicate their willingness to join in a telephone interview. Using NVivo12 software, content from the interviews will be coded per content analysis by the PI, an expert clinical nurse (NVivo Qualitative Data Analysis Software, 2020). Common themes will be identified and recorded in the respondent’s own words. Using constant comparative techniques, codes will then be clustered into themes, and themes will be clustered into categories (Boeije, 2002). A second coder will analyze for agreement and added reliability to confirm established codes.
Specific Aim 4 – Integrate the findings of Aims 1, 2, and 3 in order to present to key stakeholders a comprehensive description of 1) current MBC EOL care quality, and 2) a suggested protocol and an implementation plan for best practices to achieve optimal EOL quality. The final protocol will also consider key stakeholders feedback received.
Though the integration of Aims 1, 2, and 3, this will achieve a comprehensive description and protocol for quality in EOL care and death experience for MBC patients. In addition, the stakeholders will be asked for their reaction and evaluation of the implementation plan. The data will first be analyzed according to each of the collected methods. Using an explanatory sequential design, the qualitative data will provide additional context for the quantitative data collected through the QODD survey (Wisdom & Creswell, 2013).

Specific Aim 1 – A total of 167 women were included in the retrospective chart review analysis. The majority of the sample, (n=132, 79%), were under the age of 65 years at the time of diagnosis. Most women were White, reported a spiritual affiliation, and were either married or partnered. All were insured, with a majority being publicly insured through Medicare or a Pennsylvania-based program for coverage of breast cancer diagnosis and treatment (n=119, 84.4%). Over 25% of the MBC cohort had one or more mental health comorbidities and over 50% of the MBC cohort had one or more physical comorbidities. There was a racial survival disparity from the time of MBC diagnosis, White women had an overall survival of 41.2 months (3.4 years), while Black women had an overall survival of 19 months (1.6 years). The most prevalent poor quality EOL care indicators were: 1) hospice enrollment three days or less prior to death, 2) admitted to the ICU in the last 30 days of life, and 3) death occurring in the acute care setting.
Of the demographic factors, increasing age at MBC diagnosis was correlated to a higher incidence of ICU admissions 30 days prior to death (p=0.03) and trended towards significance with more than one hospital stay 30 days prior to death (p=0.06). Black women were also more likely to experience each poor quality EOL care indicator as compared with White women. Endorsement of spiritual affiliation increased the likelihood of experiencing one or more ER visits (4.2 times), hospital admissions (1.9 times), and ICU admissions (3.9 times) in the last 30 days of life and was associated with death occurring in the acute care setting (3.1 times). Patients from neighborhoods of more deprivation were more likely to experience delayed hospice referrals (p=0.02). Married patients were 4.1 times more likely to receive any chemotherapy in the last 14 days of life. The presence of even a physical (p=0.001) or mental health (p=0.002) comorbidity were associated with delayed hospice referrals. For clinical factors, patients with negative ER status tended to receive both new chemotherapies in the last 30 days of life and any chemotherapy in the last 14 days of life.
Specific Aim 2 – For the QODD survey, a majority of the DPR participants were male (72%, n=18), the spouse of the deceased MBC patient (64%, n=16), White (98%, n=23), and had an average of 59.84 years of age. Total survey scores ranged from 13-216, having a total possible amount of 240. The average of scores was 137.28.
Specific Aim 3 – There were sixteen interviews conducted. Primary categories that emerged describing high quality care at the end-of-life were sources of resilience, communication experiences, supportive systems, and knowledge regarding both disease, treatment, and bereavement care. There was minimal frustration or regret verbalized around experiencing poor quality EOL care indicators (i.e., acute care utilization, aggressive chemotherapy, and minimal hospice care). However. there was a verbalized need for having EOL care discussions, regardless of difficulty, as many acknowledged they would have felt more prepared.
Specific Aim 4 – In response to the question, “did your loved one discuss her wishes for EOL care with her doctor?,” 75% (n=12) answered “yes,” 18.8% (n=3) answered “no,” and 6.2% (n=1) answered, “I don’t know.” While the majority of survey responses reported that “yes” (n=12; 75%), patients were able to discuss their EOL care wishes with their physician, and that this was an above average experience (n=8; 66.7%), the comments and perceptions surrounding such conversations were somewhat incongruent with the quantitative data. When asked to describe these conversations further, the DPR considered them unsatisfactory or extremely limited in content, focusing more on care decisions rather than prognosis. The omission of any prognostication on the part of the physician, ultimately left the patient and DPR without clear direction. Furthermore, upon reflection by the DPR, this lack of direction was more burdensome than anything else.
The stakeholder feedback group reported several barriers to achieving meaningful goals of care discussions during the trajectory of metastatic breast cancer care. These barriers included individual providers (i.e., communication difficulties, provider resistance, lack of training), system-wide issues (i.e., clinical time allotment, charting inconsistencies), and current widespread beliefs regarding the nature of metastatic disease.

The perception surrounding the quality of care received at the EOL can vary for each patient and DPR. It is vital to ensure that goal concordance is discussed long before EOL care is required with both the patient and the DPR. Consideration of the individual patient wishes and how adherence to those wishes promote a high-quality EOL care experience will need to be further examined in future studies.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Brazee, Rachel L.RLH100@pitt.eduRLH100
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairRosenzweig, Margaret Qmros@pitt.edumros
Committee MemberLindell, Kathleenlindellk@musc.edulindellk
Committee MemberSeaman, JenniferJBS31@pitt.eduJBS31
Committee MemberSereika, Susan M.ssereika@pitt.edussereika
Date: 31 January 2022
Date Type: Publication
Defense Date: 7 October 2021
Approval Date: 31 January 2022
Submission Date: 24 December 2021
Access Restriction: 2 year -- Restrict access to University of Pittsburgh for a period of 2 years.
Number of Pages: 209
Institution: University of Pittsburgh
Schools and Programs: School of Nursing > Nursing
Degree: PhD - Doctor of Philosophy
Thesis Type: Doctoral Dissertation
Refereed: Yes
Uncontrolled Keywords: End of Life; Quality of Care; Metastatic Breast Cancer
Date Deposited: 31 Jan 2022 20:33
Last Modified: 31 Jan 2022 20:33


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