Empathy at the end of life: how to care without compromising your well-being

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.

Download Full-text

Spiritual Diversity, Spiritual Assessment, and Māori End-of-Life Perspectives: Attaining Ka Ea

Religions ◽

10.3390/rel11100536 ◽

2020 ◽

Vol 11 (10) ◽

pp. 536

Author(s):

Holly Nelson-Becker ◽

Tess Moeke-Maxwell

Keyword(s):

End Of Life ◽

Rapid Assessment ◽

Well Being ◽

Spiritual Needs ◽

Assessment Instruments ◽

Spiritual Values ◽

Spiritual Assessment ◽

Contemporary World ◽

Spiritual Diversity ◽

Sense Of Satisfaction

The contemporary world is endowed with increasingly diverse spiritual and cultural perspectives, yet little is known about the spiritual concerns and spiritual resilience of Māori from Aotearoa New Zealand at the end of life. A context is provided for the value of spiritual assessment and identification of spiritual needs or concerns. Spiritual concerns and the desire to attain a state of ka ea (fulfillment, gratitude, or peace) may point to interventions, helping activities, or referrals that guide treatment. We reflect on qualitative findings from the 2017–2020 Pae Herenga study of 61 caregiving families, their helping professionals, and religious/spiritual leaders. We explore essential spiritual values and practices that support kaumātua (older tribal people) who have a life-limiting illness in achieving a sense of satisfaction and fulfilment at the end of life. Three themes emerged: the relational is spiritual, the need to live into the future, and value of spiritual end-of-life care. While some scholars have lamented the lack of culturally appropriate rapid assessment instruments, we suggest that a more open-ended assessment guide is better suited to understand key elements of spiritual diversity and spiritual concerns, particularly the spiritual strengths and resources that lead to well-being and even thriving at life’s end. Finally, learning about spiritual diversity can assist others to reconnect to lost meanings and regain a more holistic and centred view of life.

Download Full-text

A Review of Brooke Army Medical Center Chaplaincy Service During the SARS-COV2 Pandemic: Implications for Service Structure and Patient Needs

Military Medicine ◽

10.1093/milmed/usab353 ◽

2021 ◽

Author(s):

Zaith Bauer ◽

Joseph Sherwin ◽

Stanley Smith ◽

Jason Radowsky

Keyword(s):

Mortality Rate ◽

End Of Life ◽

Medical Center ◽

Well Being ◽

Primary Study ◽

P Value ◽

Inpatient Setting ◽

Spiritual Support ◽

Army Medical ◽

Brooke Army Medical

ABSTRACT Introduction We aimed to evaluate the effect of the SARS-COV2 pandemic on chaplain utilization at Brooke Army Medical Center. Our hypothesis was that multiple pandemic-related factors led to a care environment with increased mental and spiritual stress for patients and their families, leading to an increased need for adjunct services such as chaplaincy. Materials and Methods This was a single-institution retrospective chart review study that evaluated the records of 10,698 patients admitted between July 1, 2019, and January 31, 2020, or between July 1, 2020, and January 31, 2021. Our primary study outcomes included the number of chaplain consultations, the number of visits per consultation, and the time of visits between the two study cohorts. Secondary outcomes included inpatient mortality and the number of end-of-life visits. We also isolated a subgroup of patients admitted with COVID-19 and compared their outcomes with the two larger cohorts. Statistical analysis included t-test or chi-squared test, based on the variable. This study was reviewed and approved by the Brooke Army Medical Center Institutional Review Board (IRB ID C.2021.010e). Results Fewer consults were performed during the study period affected by the SARS-COV2 pandemic (4814 vs. 5884, P-value <.01). There were fewer individual visits per consult during the study period affected by the SARS-COV2 pandemic (1.44 vs. 1.64, P-value <.01), which led to fewer overall time spent per consult (37.41 vs. 41.19 minutes, P-value <.01). The 2020 cohort (without COVID-19 cases) demonstrated a higher mortality rate than the 2019 cohort (2.8% vs. 1.9%, P-value <.01). The COVID-19 diagnosis cohort demonstrated a much higher mortality rate compared to other patients in the 2020 cohort (19.3% vs. 2.8%, P-value <.01). We demonstrated the relative need for EOL consults by presenting the ratio of EOL consults to inpatient deaths. This ratio was highest for the COVID-19 diagnosis cohort (0.76) compared to the 2020 cohort (0.50) and the 2019 cohort (0.60). Conclusions This study demonstrates that factors related to the SARS-COV2 pandemic resulted in fewer chaplaincy consults in our inpatient setting. We did not find other reports of a change in the rate of chaplaincy consultation, but available reports suggest that many centers have had difficulty balancing the spiritual needs of patients with local exposure guidelines. Although fewer individual chaplain consults occurred during the SARS-COV2 pandemic, our chaplain service innovated by utilizing various phone, video, and web-based platforms to deliver spiritual support to our community. Our study also suggests that the patients most greatly affected by the pandemic have an increased need for spiritual support, especially at the end of life. Future studies in this subject should examine the effect of various types of chaplain services as they relate to the health and well-being of hospitalized patients.

Download Full-text

Enabling first and second year doctors to negotiate ethical challenges in end-of-life care: a qualitative study

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002672 ◽

2021 ◽

pp. bmjspcare-2020-002672

Author(s):

Sinead Donnelly ◽

Simon Walker

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Moral Distress ◽

Well Being ◽

First Year ◽

Life Care ◽

Ethical Challenges ◽

Life And Death ◽

Medicine Physician ◽

Second Year

ObjectiveTo understand the unique ethical and professional challenges confronting first and second year doctors in caring for people who are dying, and to learn what factors help or hinder them in managing these.Method6 first year and 7 second year doctors were interviewed one-to-one by a senior palliative medicine physician (SD), quarterly over 12 months, using a semistructured approach. Thematic analysis was conducted with the findings, following the general inductive approach.Results21 hours of recorded interviews were analysed by SD, and ethical and professional issues were identified. These were discussed with SW, and sorted into seven broad categories. The participants’ accounts of the issues convey a strong ethical sensitivity, developed through their undergraduate training. A recurring challenge for them through their first 12–24 months of work as doctors is being responsible for the decisions, knowing that what they do can have life and death consequences. The participants frequently describe senior doctors as an important source of support, and the lack of such support as leading to moral distress and demoralisation. Another important factor is having opportunity to discuss and reflect on the decisions after they are made. Where such reflection had been facilitated properly, participants displayed considerable growth in their ability to manage ethical challenges.ConclusionSenior support and opportunities for reflection need to be recognised as key factors in enabling first and second year to respond appropriately to ethical challenges in end-of-life care, and in sustaining their well-being through this critical stage of their professional life.

Download Full-text

Meaning-Centered Psychotherapy

Psycho-Oncology ◽

10.1093/med/9780190097653.003.0062 ◽

2021 ◽

pp. 489-494

Author(s):

Melissa Masterson Duva ◽

Wendy G. Lichtenthal ◽

Allison J. Applebaum ◽

William S. Breitbart

Keyword(s):

End Of Life ◽

Advanced Cancer ◽

Psychosocial Care ◽

Well Being ◽

Cancer Center ◽

Existential Psychology ◽

Patients With Cancer ◽

Spiritual Well Being ◽

The Face

Existential concerns carry significant distress, particularly among patients with advanced cancer. For patients who are facing death, a sense of meaning—and the preservation of that meaning—is not only clinically and existentially important but also central to providing holistic, high-quality end-of-life care. Nearly two decades ago, the authors’ research group at Memorial Sloan Kettering Cancer Center began to understand that a meaning-centered approach to psychosocial care was imperative to alleviate the existential distress that plagued many patients with advanced cancer. Based on Viktor Frankl’s work on the importance of meaning and principles of existential psychology and philosophy, they developed Meaning-Centered Psychotherapy (MCP) to help patients with advanced cancer sustain or enhance a sense of meaning, peace, and purpose in their lives in the face of terminal cancer. This chapter provides an overview of MCP in working with patients with cancer. It summarizes the ever-growing body of research that has demonstrated the effectiveness of MCP in improving meaning, spiritual well-being, and quality of life and in reducing psychological distress and despair at end of life. Adaptations of MCP for other purposes and populations, such as cancer survivors, caregivers, and bereavement, are mentioned but are elaborated on in other specific chapters related to these issues in this textbook.

Download Full-text

Happiness at the End of Life: A Qualitative Study

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909120939857 ◽

2020 ◽

pp. 104990912093985

Author(s):

Anne O’Callaghan ◽

Ben Bickford ◽

Conor Rea ◽

Antonio Fernando ◽

Phillipa Malpas

Keyword(s):

Palliative Care ◽

End Of Life ◽

Hospice Care ◽

Qualitative Interviews ◽

Well Being ◽

Natural World ◽

The Internet ◽

Present Moment ◽

Hospice Patients ◽

Health And Well Being

Background: Happiness is a core ingredient of health and well-being, yet relatively little is known about what happiness means for individuals near the end of life, and whether perceptions of happiness change as individuals approach the end of their lives. Aim: The aim of this study was to explore, through interviews, how individuals experiencing hospice care understood and conceptualized happiness. Design: Qualitative interviews with hospice patients were analyzed thematically. Setting/Participants: Adult patients (n = 20) in a New Zealand hospice who were receiving palliative care and who could give their informed consent were invited by hospice nurse coordinators to an interview. Results: Four themes emerged from analysis of the transcribed interviews. Participants defined happiness most frequently and in most depth in relation to connection with others. They identified being in the present moment, particularly in relation to nature, and that happiness had become less associated with money, status, or possessions. They had an attitude of determination to focus on what mattered now. Conclusion: Patients receiving palliative care were generally happy with their lives, appreciated the simpler aspects of life away from the material. There was a common exhortation to young people to avoid focusing too much on acquisition and the internet and to prioritize instead social connection and engagement with the natural world.

Download Full-text

Individual Meaning-Centered Psychotherapy for Advanced Cancer Patients

10.1093/med/9780199837229.003.0003 ◽

2017 ◽

Author(s):

William Breitbart ◽

Wendy G. Lichtenthal ◽

Allison J. Applebaum ◽

Melissa Masterson

Keyword(s):

Clinical Trials ◽

End Of Life ◽

Cancer Patients ◽

Advanced Cancer ◽

Therapeutic Intervention ◽

Well Being ◽

Existential Psychology ◽

Advanced Cancer Patients ◽

Spiritual Well Being ◽

Existential Concerns

Among the advanced cancer population, existential concerns are major issues that promote significant distress. For patients who are facing death, meaning and the preservation of meaning are not only clinically and existentially important but also central concepts to a therapeutic intervention. Based on Viktor Frankl’s logotherapy and the principles of existential psychology and philosophy, “meaning-centered psychotherapy” was developed to help patients with advanced cancer sustain or enhance a sense of meaning, peace, and purpose in their lives. This chapter provides an overview of work developing and testing individual meaning-centered psychotherapy (IMCP). It provides an overview of the session content in the IMCP intervention. It also presents findings from clinical trials, which support the efficacy of IMCP as an intervention to increase a sense of meaning, spiritual well-being, and hope while decreasing end-of-life despair. Furthermore, it presents difficult scenarios that may arise when delivering IMCP for clinicians interested in this work.

Download Full-text

4526 Coping with End of Life Care: Compassion Fatigue and Burnout Effects on Cortisol Patterns of Health Care Providers Caring for Children

Journal of Clinical and Translational Science ◽

10.1017/cts.2020.232 ◽

2020 ◽

Vol 4 (s1) ◽

pp. 71-71

Author(s):

Liza Carolina Sanchez-Plazas ◽

Ricardo L. Garcia ◽

Kelly Komatz

Keyword(s):

End Of Life ◽

Compassion Fatigue ◽

Child Death ◽

Maslach Burnout Inventory ◽

Well Being ◽

Burnout Syndrome ◽

Control Group ◽

Care Providers ◽

Dying Children ◽

The Impact

OBJECTIVES/GOALS: The objectives are to assess the impact of cumulative grief on the development of Compassion Fatigue (CF) and Burnout Syndrome (BS) in HCPs who care for dying children. We will also evaluate the relationship between CF and cortisol patterns in HCPs. METHODS/STUDY POPULATION: Cross-sectional study to be conducted in a Pediatric Hospital in Puerto Rico. A sample of 50 pediatric nurses will be selected to collect the data to evaluate the occurrence of CF and BS among HCP caring for children during end of life (EoL). Study subjects will include nurses who care for dying children in the Intensive Care Units and Oncology ward. Nurses working in the pediatric ward will be included as the control group. Three validated instruments (Spanish Version) will be administered (Professional Quality of Life vIV, Maslach Burnout Inventory- HSS, briefCOPE scale). Cortisol samples in saliva and hair will also be taken to determine levels in these HCPs. RESULTS/ANTICIPATED RESULTS: Our expected outcome is that CF and BS will be more frequent in HCPs caring for children during EoL compared with controls and that EoL nurses will have higher scores on CF scale and more frequent dysregulated cortisol patterns. DISCUSSION/SIGNIFICANCE OF IMPACT: Understanding how HCPs cope with grief caused by child death and the occurrence of CF and BO in our hispanic population allowing us to develop support strategies based on the specific HCPs needs. This knowledge will help improve HCPs’ well-being and may diminish the physiologic impact on cortisol.

Download Full-text

Performance Status and Symptom Scores of Women With Gynecologic Cancer at the End of Life

International Journal of Gynecological Cancer ◽

10.1097/igc.0b013e318291e5ef ◽

2013 ◽

Vol 23 (5) ◽

pp. 971-978 ◽

Cited By ~ 15

Author(s):

Lori Spoozak ◽

Hsien Seow ◽

Ying Liu ◽

Jason Wright ◽

Lisa Barbera

Keyword(s):

Cervical Cancer ◽

End Of Life ◽

Performance Status ◽

Gynecologic Cancer ◽

Symptom Burden ◽

Symptom Assessment ◽

Well Being ◽

Assessment System ◽

Edmonton Symptom Assessment System ◽

Symptom Scores

ObjectiveThe Palliative Performance Scale (PPS), which measures performance status (100 = best performance to 0 = dead), and the Edmonton Symptom Assessment System (ESAS), which measures severity of 9 symptoms, are routinely collected at ambulatory cancer visits in Ontario. This study describes the trajectory of scores in patients with gynecologic cancer in the last 6 months of life.MethodsAn observational study was conducted between 2007 and 2010. Patients had ovarian/fallopian tube, uterine, and cervical cancer and required 1 or more PPS or ESAS assessment in the 6 months before death. Outcomes were the average PPS and ESAS scores per week before death. Using logistic regression, we analyzed the odds ratio of reporting a moderate to severe score for each symptom.ResultsSeven hundred ninety-five (PPS) and 1299 (ESAS) patients were included. The average PPS score started at 70 and ended at 30, rapidly declining in the last 2 months. For ESAS symptoms, drowsiness, decreased well-being, lack of appetite, and tiredness increased in severity closer to death and were prevalent in more than 70% of patients in the last week of life. Patients with cervical cancer had increased odds of moderate to severe pain (1.74; 95% confidence interval, 1.30–2.32) compared with ovarian cancer.ConclusionsTrajectories of mean performance status had not reached the “end-of-life” phase until 1 week before death. A large proportion of the gynecologic cancer patients reported moderate to severe symptom scores as death approached. Pain was uniquely elevated in the cervical cancer cohort as death approached. Adequately managing the symptom burden appears to be a significant issue in end-of-life gynecologic care.

Download Full-text

Spirituality and religion in terminally ill patients with cancer

Journal of Clinical Oncology ◽

10.1200/jco.2007.25.18_suppl.19587 ◽

2007 ◽

Vol 25 (18_suppl) ◽

pp. 19587-19587

Author(s):

P. Heras ◽

K. Kritikos ◽

A. Georgopoulou ◽

A. Hatzopoulos ◽

N. Kritikos

Keyword(s):

End Of Life ◽

Cancer Patients ◽

Terminally Ill ◽

Well Being ◽

Negative Association ◽

Terminally Ill Cancer Patients ◽

Patients With Cancer ◽

Spirituality And Religion ◽

Spiritual Well Being ◽

Strong Negative Association

19587 Background: The importance of spirituality and religion in coping with a terminal illness is becoming increasingly recognised. We aimed to assess the relation between spiritual well-being, religiosity, depression, and end-of-life despair in terminally-ill cancer patients. Methods: One hundred forty three terminally ill cancer patients with a life expectancy of less than 6 months were interviewed with a series of standardised instruments, including the FACIT Spiritual Well-Being Scale, a religiosity index similar to those used in previous research, the Hamilton depression rating scale, the Memorial Symptom Assessment Scale and the Duke-UNC Functional Social Support Questionnaire. Results: A strong negative association was observed between the FACIT Spiritual Well-Being scale and the HDRS, but no such relationship was found for religiosity. Similar patterns were observed for the FACIT subscales, finding a strong negative association between the meaning and peace subscale (which corresponds to the more existential aspects of spirituality) and HDRS scores, whereas a positive, albeit nonsignificant, association was observed for the faith subscale (which corresponds more closely to religiosity). Conclusions: These results suggest that the beneficial aspects of religion may be primarily those that relate to spiritual well-being rather than to religious practices per se. Spiritual well-being offers some protection against end-of-life despair in those for whom death is imminent. The area of spiritual work is fertile ground for further investigation, especially interventions aimed at improving spiritual health and general quality of life among terminally ill patients with cancer. No significant financial relationships to disclose.

Download Full-text