Improving End of Life Cancer Outcomes Through Development and Implementation of a Spiritual Care Advocate Program

2021 ◽  
pp. 104990912199541
Author(s):  
Toni Cipriano-Steffens ◽  
John F. Cursio ◽  
Fay Hlubocky ◽  
Marsha Sumner ◽  
Deborah Garnigan-Peters ◽  
...  
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Spiritual Care ◽  
Metastatic Cancer ◽  
Religious Practice ◽  
Healthcare Team ◽  
Spiritual Support ◽  
Eol Care ◽  
Care Advocate

Background: Explored whether increased support for spiritual concerns between the healthcare team and patients through the provision of a Spiritual Care Advocate (SCA) would improve end of life outcomes in a metastatic cancer population. Design: Newly diagnosed metastatic cancer patients were recruited at the University of Chicago Medical Center and received spiritual support from a Spiritual Care Advocate during chemotherapy treatments. The final sample consisted of 42 patients (58% of those approached) who completed the baseline survey and had known survival status. Measurement: Patients completed pre/post surveys measuring spiritual support and palliative quality of life. Baseline measurements of religious practice and externalizing religious health beliefs were also obtained. Receipt of aggressive EOL care was derived from the electronic medical record. Result: Median age was 61 years, with 48% Black, and predominantly male (62%). Of the 42 patients, 30 (70%) had died by the time of this analysis. Perceived spiritual support from the medical team increased in 47% of those who received non-aggressive EOL care and by 40% in those who received aggressive EOL care (p=0.012). Patient perceptions of spiritual support from the medical community increased from 27% at baseline to 63% (p=0.005) after the SCA intervention. Only 20% of recipients received aggressive treatments at end of life. Conclusion: The SCA model improved the perceived spiritual support between the healthcare team and patients. Although limited by a small sample size, the model was also associated with an improvement in EOL patients’ quality of life, spiritual wellbeing, and decreased aggressive EOL care.

Assessing Quality of Life of Patients with Advanced Chronic Obstructive Pulmonary Disease in the End of Life

2005 ◽  
Vol 21 (3) ◽  
pp. 180-187 ◽  
Author(s):  
Samantha M.C. Pang ◽  
Kin-Sang Chan ◽  
Betty P.M. Chung ◽  
Kam-Shing Lau ◽  
Edward M.F. Leung ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Chronic Obstructive Pulmonary Disease ◽  
End Of Life ◽  
Pulmonary Disease ◽  
Metastatic Cancer ◽  
Chinese Patients ◽  
Chronic Obstructive ◽  
Life Questionnaire ◽  
Obstructive Pulmonary Disease

Given the limitations of existing health-related quality-of-life (QOL) measures in capturing the end-of-life experience of patients with advanced chronic diseases, an empirically grounded instrument, the quality-of-life concerns in the end of life questionnaire (QOLC-E), was developed. Though it was built on the McGill quality of life questionnaire (MQOL), its sphere is more holistic and culturally specific for the Chinese patients in Hong Kong. One hundred and forty-nine patients with advanced chronic obstructive pulmonary disease (COPD) or metastatic cancer completed the questionnaire. Seven factors (28 items) which emerged from the factor analysis were grouped into four positive (support, value of life, food-related concerns, and healthcare concerns) and four negative (physical discomfort, negative emotions, sense of alienation, and existential distress) subscales. Good internal consistency and concurrent validity were shown. The results also revealed that these two groups of patients had similar QOL concerns. The validity of applying QOLC-E as an outcome measure to evaluate the effectiveness of palliative and psychoexistential interventions has yet to be tested.

The Influence of Hypothetical Death Scenarios on Multidimensional End-of-Life Care Preferences

2016 ◽  
Vol 35 (1) ◽  
pp. 52-59 ◽  
Author(s):  
Kara B. Dassel ◽  
Rebecca Utz ◽  
Katherine Supiano ◽  
Nancy McGee ◽  
Seth Latimer
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Treatment Options ◽  
National Sample ◽  
Health Related Quality ◽  
Location Of Death ◽  
Related Quality ◽  
Health Related ◽  
Eol Care

Background: Differences in end-of-life (EOL) care preferences (eg, location of death, use of life-sustaining treatments, openness to hastening death, etc) based on hypothetical death scenarios and associated physical and/or cognitive losses have yet to be investigated within the palliative care literature. Aim: The purpose of this study was to explore the multidimensional EOL care preferences in relation to 3 different hypothetical death scenarios: pancreatic cancer (acute death), Alzheimer disease (gradual death), and congestive heart failure (intermittent death). Design: General linear mixed-effects regression models estimated whether multidimensional EOL preferences differed under each of the hypothetical death scenarios; all models controlled for personal experience and familiarity with the disease, presence of an advance directive, religiosity, health-related quality of life, and relevant demographic characteristics. Setting/Participants: A national sample of healthy adults aged 50 years and older (N = 517) completed electronic surveys detailing their multidimensional preferences for EOL care for each hypothetical death scenario. Results: The average age of the participants was 60.1 years (standard deviation = 7.6), 74.7% were female, and 66.1% had a college or postgraduate degree. Results revealed significant differences in multidimensional care preferences between hypothetical death scenarios related to preferences for location of death (ie, home vs medical facility) and preferences for life-prolonging treatment options. Significant covariates of participants’ multidimensional EOL care preferences included age, sex, health-related quality of life, and religiosity. Conclusion: Our hypothesis that multidimensional EOL care preferences would differ based on hypothetical death scenarios was partially supported and suggests the need for disease-specific EOL care discussions.

Quality of life changes and intensive care preferences in terminal cancer patients

2014 ◽  
Vol 13 (5) ◽  
pp. 1309-1316 ◽  
Author(s):  
In Cheol Hwang ◽  
Bhumsuk Keam ◽  
Young Ho Yun ◽  
Hong Yup Ahn ◽  
Young-Ae Kim
Keyword(s):  
Quality Of Life ◽  
Intensive Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Medical Decision ◽  
Terminal Cancer ◽  
Terminal Cancer Patients ◽  
Eol Care ◽  
Stability Of Preferences

AbstractObjective:There is scarce research on the short-term fluctuations in end-of-life (EoL) care planning for seriously ill patients. The aim of our study was to investigate the stability of preferences regarding treatment in an intensive care unit (ICU) and identify the factors associated with changes in preferences in terms of quality of life (QoL).Method:A prospective examination on preference changes for ICU care in 141 terminal cancer patients was conducted. Patients were categorized according to their change in preference during the final two months of their lives into four categories: (1) the keep–accept group, (2) the keep–reject group, (3) the change to accept group, and (4) the change to reject group. Using multiple logistic analyses, we explored the association between patient demographics, health-related QoL, and changes in ICU preference.Results:The overall stability of ICU preferences near the end of life was 66.7% (κ = 0.33, p < 0.001). Married patients were more likely to change their preference regarding ICU care [adjusted odds ratio (aOR) toward accept 12.35, p = 0.021; aOR toward reject 10.56, p = 0.020] than unmarried patients. Patients with stable physical function tended to accept ICU care (aOR = 5.05, p = 0.023), whereas those with poor performance (aOR = 5.32, p = 0.018), worsened QoL (aOR = 8.34, p = 0.007), or non-aggravated fatigue (aOR = 8.36, p = 0.006) were more likely to not accept ICU care.Significance of results:The attitudes of terminally ill cancer patients regarding ICU care at the end of life were not stable over time, and changes in their QoL were associated with a tendency to change their preferences about ICU care. Attention should thus be paid to patients' QoL changes to improve medical decision making with regard to EoL care.

Caregiving near the end of life: Unmet needs and potential solutions

2003 ◽  
Vol 1 (3) ◽  
pp. 247-259 ◽  
Author(s):  
PATRICIA A. MANGAN, ◽  
KATHRYN L. TAYLOR ◽  
K. ROBIN YABROFF ◽  
DAVID A. FLEMING ◽  
JANE M. INGHAM
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Focus Groups ◽  
End Of Life ◽  
Unmet Needs ◽  
Metastatic Cancer ◽  
Well Being ◽  
Care Quality ◽  
Comprehensive Cancer Center

Objective:A key aspect of the role of clinicians caring for patients in the setting of advanced illness focuses on attending to the needs of informal caregivers during the end-of-life period. The purpose of this study was twofold: (1) to complement and enrich existing quantitative findings regarding caregiver burden near the end of life, and (2) to identify potential solutions to caregivers' unmet needs in an effort to assist clinicians in the development of clinical interventions.Methods:This qualitative study, using focus groups and content analysis of transcripts, was conducted in a comprehensive cancer center in Washington, DC. Seven focus groups were held: three with recently bereaved caregivers and four with active caregivers of patients with metastatic cancer and an expected survival of 6 to 12 months.Results:Data were stratified into two broad categories: (1) general problems and (2) behaviors/activities that were helpful/would have been helpful in alleviating these problems. Within each of these two categories, five subcategories emerged: medical care (including provision of information, coordination of care, bedside manner, satisfaction with care), quality of life (including well-being, role adjustments), help from others (including practical assistance, social support), positives of caregiving, and unsolicited themes (including job flexibility, impact of the disease on the family, informational needs, relationship with patient).Significance of results:Results suggest caregivers may benefit from more information about patient prognosis and hospice, attention to quality-of-life issues, and enhanced, direct communication with clinicians. Although information of this nature is likely to be known to palliative care clinicians, the specific details and verbal insights provided by caregivers give an important voice to existing quantitative data and may provide more detailed information to assist palliative care clinicians seeking to develop interventions to meet caregiver needs during the period near the end of life.

scholarly journals Review of End-of-Life Care and Supportive Care during Disease Course in Elderly Patients with Multiple Myeloma

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4731-4731
Author(s):  
Sunyoung Jeong ◽  
Seug Yun Yoon ◽  
Min Young Lee ◽  
Kyoung Ha Kim ◽  
Nam Su Lee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Myeloma ◽  
Overall Survival ◽  
Supportive Care ◽  
End Of Life ◽  
Performance Status ◽  
Age At Diagnosis ◽  
Disease Course ◽  
Eol Care

Abstract Background Multiple myeloma (MM) is a plasma cell malignancy of which the median age at diagnosis is 70 years old. The novel agents had contributed significant improvement in the overall survival of MM. However, there is a disparity in survival between young and old patients, and early mortality is high in patients older than 70. Therefore, before making a treatment plan for elderly MM patients, it is crucial to consider both quality of life and even end-of-life (EOL) care. This study evaluated EOL characteristics and real-world supportive care in elderly MM patients. Methods We retrospectively reviewed medical records of patients diagnosed with MM at an age older than 70 between January 2011 and April 2021. We identified baseline characteristics, symptom burdens, factors associated with hospitalizations during the disease course, and several indicators of EOL; place of death, length of hospitalization, cause of death, chief complaints, agreement of "do-not-resuscitate (DNR)", other aggressive and less aggressive interventions in their last hospitalization. Result A total of 52 patients were included. The median age at diagnosis is 76 years old. 12 (23.08%) patients showed initial Eastern cooperative oncology group (ECOG) performance status 3 or 4. 30 (57.69%) patients had hypertension, 18 (34.62%) had diabetes, and 8 (15.38%) had chronic lung disease; asthma, COPD, and bronchiectasis. 3 (5.77%) patients had initial International staging system (ISS) stage 1 disease, 16 (30.77%) had 2, and 29 (55.77%) had 3. Only 2 (3.85) patients never received chemotherapy; one of them showed initial ECOG 3, and the other was unknown. The median overall survival was 16.69 months. 27 (51.92%) patients visited the emergency department during their disease course at least once, and 19 (36.54%) were admitted intensive care unit more than once. Only 4 (7.59%) patients were never admitted hospital during their disease course except for chemotherapy. The mean number of hospitalization was 3.23, and the reason for 41.67% of hospitalization was to control myeloma-related symptoms; general weakness, acute kidney injury, pain, fracture, cord compression, and anemia. The rate of hospitalization day after diagnosis was 9.85%. The EOL characteristics of 24 (46.15%) deceased at the hospital were analyzed. An average hospitalization length was 41.96 days. Other EOL characteristics are detailed in table 1. Conclusion Elderly MM patients spent almost 10% of their disease duration at the hospital to control disease-related symptoms. It might explain why elderly MM patients received aggressive therapy despite their age and poor performance status. To enhance their quality of life, we need to focus more on supportive care and make a decision for chemotherapy carefully. Furthermore, for EOL care, discussion for performing an aggressive intervention with patients should be encouraged. Figure 1 Figure 1. Disclosures No relevant conflicts of interest to declare.

Fact file 9: Palliative care

2017 ◽  
Author(s):  
Daisy Fancourt
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Improve Quality ◽  
Spiritual Support ◽  
Life Care ◽  
Seriously Ill Patients ◽  
Seriously Ill

Palliative care is support for seriously ill patients and their families. The aim of palliative care is to minimize pain and discomfort as much as possible and provide psychological, social, and spiritual support. An important part of palliative care is end-of-life care, which aims to improve quality of life as much as possible while patients are alive and then help them to die with dignity....

scholarly journals Perspectives of Singaporean patients and caregivers towards quality of life or quantity of life with disease-modifying treatment in the end-of-life setting

2016 ◽  
Vol 26 (1) ◽  
pp. 11-16 ◽  
Author(s):  
David Sng ◽  
Liang Qi Lee ◽  
Keson Tay ◽  
Rachel Jiayu Lee ◽  
Rukshini Puvanendran ◽  
...  
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Filial Piety ◽  
Metastatic Cancer ◽  
Healthcare Providers ◽  
Stage Iv ◽  
Disease Modifying ◽  
Oncology Centre ◽  
Disease Modifying Treatment

Background: Healthcare providers often struggle to balance the sometimes competing considerations of maximizing quality of life (QoL) and quantity of life with disease-modifying treatment (DMT). These decisions require in-depth dialog between all parties in order to understand the concerns and perspectives of the patient and caregiver in this period. Objectives: The objectives of this study were to explore Singaporean patients’ and caregivers’ attitudes towards QoL and DMT, and to examine the reasons behind their beliefs. Methods: Participants were given a video vignette of a family discussing how best to care for their mother who is recently diagnosed with cancer and were interviewed regarding their thoughts on QoL and DMT for a 70-year-old patient with stage IV metastatic cancer. Subjects/Setting: A total of 21 patients and caregivers were recruited from a tertiary oncology centre. Results: Both patients and caregivers show little support for pursuing QoL, despite the likely compromise to the patients’ QoL. These participants believed that not pursuing DMT was tantamount to giving up and accepting death. Whilst patients did accept that in some circumstances a QoL approach would be acceptable, caregivers remained adamant upon a DMT approach. The perspectives of caregivers reflected the influence of the Confucian-inspired practice of filial piety. Conclusion: Local sociocultural beliefs and values continue to play a significant consideration in end-of-life decision-making. However, compliance with these beliefs have evolved, with greater consideration given to clinical and QoL factors.

scholarly journals Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review

2019 ◽  
Vol 97 (1) ◽  
pp. 113-175 ◽  
Author(s):  
CATHERINE J. EVANS ◽  
LUCY ISON ◽  
CLARE ELLIS‐SMITH ◽  
CAROLINE NICHOLSON ◽  
ALESSIA COSTA ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Service Delivery ◽  
Older People ◽  
End Of Life ◽  
Rapid Review ◽  
Service Delivery Models ◽  
Delivery Models

scholarly journals Last Place of Care and End-of-Life Quality of Life in the United States: Evidence From a National Representative Data Set

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 17-17
Author(s):  
Yifan Lou ◽  
Nan Jiang ◽  
Katherine Ornstein
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Life Care ◽  
Person Centered Care ◽  
Centered Care ◽  
The Relationship

Abstract Background: Quality of life (QoL) during last stage of life has raised expanded interests as an important aspect of person-centered care. Last place of care (LPC), refer to the last place decedents received their formal end-of-life care (EOLC), has been identified as a key indicator of older adults’ end-of-life QoL, but the relationship was understudied. This study explores the association between LPC and end-of-life QoL among American older adults. Methods: Data used seven waves of Last Month of Life data with a total sample of 3068 Medicare decedents in NHATS. Outcome is end-of-life QoL assessed by eleven measures on four domains: pain and symptoms management (SP), quality of healthcare encounter (HE), person-centered care (PC), and overall quality of care (QC). LPC was categorized into home, hospital, nursing home, and residential hospice. Multivariate logistic regression analyses were used to examine the relationship with covariates. Results: LPC varied by most demographic characteristics, except immigration status and education. Older adults whose LPC is hospital, compared to those who had home-care, were less likely to have great experiences on HE, PC, and QC. People dying at nursing homes are more likely to receive care meeting their dyspnea and spiritual needs. Residential hospice is negatively related to respected care, clear coordination, and keeping family informed, but are more likely to provide PS and spiritual care. Discussion: Home-based end-of-life care has certain advantages but still has room to improve on SP and religious concerns. Hospitals should keep reforming their service delivery structure to improve patients’ QoL.

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