Understanding the concept of a “good death” among bereaved family caregivers of cancer patients in Singapore

AbstractObjective:The aim of this study was to examine the concept of a good death from the perspectives of both the dying person and the family caregiver, as perceived by bereaved family caregivers of advanced cancer patients.Method:The data were gathered from five focus group discussions and one face-to-face qualitative interview conducted over 8 months among 18 bereaved family caregivers recruited from a local hospice. The transcripts of the focus groups and the interview were entered into NVivo Version 8 and were analyzed using the thematic approach.Results:A good death may be understood as having the biopsychosocial and spiritual aspects of life handled well at the end of life. Five major themes were identified. These were preparation for death, family and social relationships, moments at or near death, comfort and physical care, and spiritual well-being. Differences were also noted in what is important at the end of life between the patients and caregivers. Having a quick death with little suffering was perceived to be good by the patient, but the family caregiver wanted to be able to say a final goodbye to the patient. Patients tend to prefer not to die in their children's presence but the children wished to be present for the final moment. In addition, family caregivers reported it was important for them to be able to give the patients permission to die, to feel recognized for the efforts made, and to have had a fulfilling caregiving experience.Significance of results:Whereas there are global attributes of a good death, our findings suggest that patients and family caregivers may define a good death differently. Therefore, there is a need to respect, address, and reconcile the differences, so that all parties may have a good experience at the end of a person's life.

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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.

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What makes grief difficult? Perspectives from bereaved family caregivers and healthcare providers of advanced cancer patients

Palliative & Supportive Care ◽

10.1017/s1478951510000076 ◽

2010 ◽

Vol 8 (3) ◽

pp. 277-289 ◽

Cited By ~ 33

Author(s):

Kelli I. Stajduhar ◽

Wanda Martin ◽

Moira Cairns

Keyword(s):

Focus Groups ◽

End Of Life ◽

Cancer Patients ◽

Family Caregivers ◽

Family Relationships ◽

Qualitative Data ◽

Healthcare Providers ◽

Secondary Analysis ◽

Advanced Cancer Patients ◽

Bereaved Family

AbstractObjective:Family members who take on the role of caregiving for someone who is dying begin bereavement after being emotionally and physically taxed by the caregiving experience. The course of bereavement is influenced by a number of factors, including health problems, financial concerns, social support, and family relationships. This paper reports on findings from a secondary analysis of qualitative data from a study examining family caregiver coping in end-of-life cancer care, to describe, from the perspectives of bereaved family caregivers, their perspectives on what made their grief difficult.Method:Qualitative data from three focus groups with family caregivers (n = 19) and two focus groups with health professionals (n = 14) were subjected to interpretive thematic analysis.Results:Our finding suggest three broad areas that make family caregivers' grief difficult: (1) dealing with occurrences in everyday life; (2) dealing with challenges specific to the caregiving situation; and (3) dealing with the healthcare system.Significance of results:The findings provide an important beginning point in understanding the types of issues that seem to make grief difficult for family caregivers of cancer patients at the end of life and can help professional groups to understand what is needed by family caregivers in terms of support and delivery of services.

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Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002608 ◽

2020 ◽

pp. bmjspcare-2020-002608

Author(s):

Joaquín T Limonero ◽

Jorge Maté-Méndez ◽

María José Gómez-Romero ◽

Dolors Mateo-Ortega ◽

Jesús González-Barboteo ◽

...

Keyword(s):

Psychometric Properties ◽

End Of Life ◽

Family Caregivers ◽

Advanced Cancer ◽

Emotional Distress ◽

Family Caregiver ◽

Screening Tools ◽

Anxiety And Depression ◽

The Family ◽

End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

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Caregivers needing care: the unmet needs of the family caregivers of end-of-life cancer patients

Supportive Care in Cancer ◽

10.1007/s00520-017-3886-2 ◽

2017 ◽

Vol 26 (3) ◽

pp. 759-766 ◽

Cited By ~ 18

Author(s):

Maryam Hashemi ◽

Alireza Irajpour ◽

Fariba Taleghani

Keyword(s):

End Of Life ◽

Cancer Patients ◽

Family Caregivers ◽

Unmet Needs ◽

The Family

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Spiritual well-being associated with personality traits and quality of life in family caregivers of cancer patients

Supportive Care in Cancer ◽

10.1007/s00520-018-4107-3 ◽

2018 ◽

Vol 26 (8) ◽

pp. 2633-2640 ◽

Cited By ~ 4

Author(s):

Anna Vespa ◽

Roberta Spatuzzi ◽

Fabiana Merico ◽

Marica Ottaviani ◽

Paolo Fabbietti ◽

...

Keyword(s):

Quality Of Life ◽

Personality Traits ◽

Cancer Patients ◽

Family Caregivers ◽

Well Being ◽

Spiritual Well Being

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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.

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