Terminally ill patients who are supported by religious communities are more likely to receive aggressive end-of-life care rather than hospice care; spiritual support from medical teams may reverse this

2013 ◽  
Vol 17 (3) ◽  
pp. 95-95
Author(s):  
Ingela C V Thuné-Boyle
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Terminally Ill ◽  
Religious Communities ◽  
Spiritual Support ◽  
Life Care ◽  
Terminally Ill Patients ◽  
Medical Teams ◽  
To Receive

Association between Spirituality/Religiosity and Quality of End-of-Life Care (DRAFT)

2018 ◽  
Author(s):  
Marvin Omar Delgado-Guay
Keyword(s):  
End Of Life ◽  
Religious Coping ◽  
End Of Life Care ◽  
Religious Communities ◽  
Spiritual Support ◽  
Life Care ◽  
Care Outcomes ◽  
Aggressive Care ◽  
Prospective Longitudinal ◽  
To Receive

The Coping with Cancer Study is a multicenter, prospective, longitudinal observational study that examines the association between religious coping strategies and end-of-life care outcomes in patients with advanced cancer. Baseline interviews were performed to assess religious coping and other related variables. Patients were followed until death, a median of 122 days after baseline assessment. Logistic regression analyses showed a significant association between higher positive religious coping with increased preference of aggressive care at the end-of-life. Subsequent analyses from the same study showed that patients who expressed high spiritual support only from religious communities were less likely to receive hospice and more likely to receive aggressive end-of-life measures including dying in an intensive care unit. This effect was reverse in spiritual/religious care and was provided by the medical team.

scholarly journals Health Care Use by Older Adults With Acute Myeloid Leukemia at the End of Life

2017 ◽  
Vol 35 (30) ◽  
pp. 3417-3424 ◽  
Author(s):  
Rong Wang ◽  
Amer M. Zeidan ◽  
Stephanie Halene ◽  
Xiao Xu ◽  
Amy J. Davidoff ◽  
...  
Keyword(s):  
Health Care ◽  
Acute Myeloid Leukemia ◽  
End Of Life ◽  
End Of Life Care ◽  
Older Patients ◽  
Myeloid Leukemia ◽  
Hospice Care ◽  
Life Care ◽  
To Receive ◽  
Acute Myeloid

Purpose Little is known about the patterns and predictors of the use of end-of-life health care among patients with acute myeloid leukemia (AML). End-of-life care is particularly relevant for older adults with AML because of their poor prognosis. Methods We performed a population-based, retrospective cohort study of patients with AML who were ≥ 66 years of age at diagnosis and diagnosed during the period from 1999 to 2011 and died before December 31, 2012. Medicare claims were used to assess patterns of hospice care and use of aggressive treatment. Predictors of these end points were evaluated using multivariable logistic regression analyses. Results In the overall cohort (N = 13,156), hospice care after AML diagnosis increased from 31.3% in 1999 to 56.4% in 2012, but the increase was primarily driven by late hospice enrollment that occurred in the last 7 days of life. Among the 5,847 patients who enrolled in hospice, 47.4% and 28.8% started their first hospice enrollment in the last 7 and 3 days of life, respectively. Among patients who transferred in and out of hospice care, 62% received transfusions outside hospice. Additionally, the use of chemotherapy within the last 14 days of life increased from 7.7% in 1999 to 18.8% in 2012. Patients who were male and nonwhite were less likely to enroll in hospice and more likely to receive chemotherapy or be admitted to intensive care units at the end of life. Conversely, older patients were less likely to receive chemotherapy or have intensive care unit admission at the end of life, and were more likely to enroll in hospice. Conclusion End-of-life care for older patients with AML is suboptimal. Additional research is warranted to identify reasons for their low use of hospice services and strategies to enhance end-of-life care for these patients.

scholarly journals Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper

2015 ◽  
Vol 9 (1) ◽  
pp. e14-e14 ◽  
Author(s):  
Stephanie Sivell ◽  
Hayley Prout ◽  
Noreen Hopewell-Kelly ◽  
Jessica Baillie ◽  
Anthony Byrne ◽  
...  
Keyword(s):  
Qualitative Research ◽  
End Of Life ◽  
Home Environment ◽  
End Of Life Care ◽  
Terminally Ill ◽  
Well Being ◽  
Research Centre ◽  
Life Care ◽  
Home Setting ◽  
Terminally Ill Patients

ObjectivesTo present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.MethodsEight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.ResultsThe main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers’ training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.ConclusionsThe ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.

Accurate prognostic awareness and preference states influence the concordance between terminally ill cancer patients’ states of preferred and received life-sustaining treatments in the last 6 months of life

2019 ◽  
Vol 33 (8) ◽  
pp. 1069-1079 ◽  
Author(s):  
Fur-Hsing Wen ◽  
Jen-Shi Chen ◽  
Wen-Cheng Chang ◽  
Wen-Chi Chou ◽  
Chia-Hsun Hsieh ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
End Of Life Care ◽  
Nutritional Support ◽  
Terminally Ill ◽  
Cardiac Massage ◽  
Life Care ◽  
Terminally Ill Cancer Patients ◽  
Life Sustaining Treatment ◽  
To Receive

Background: Factors facilitating/hindering concordance between preferred and received life-sustaining treatments may be distorted if preferences and predictors are measured long before death. Aim: To examine factors facilitating/hindering concordance between cancer patients’ preferred and received life-sustaining-treatment states in their last 6 months. Design: Longitudinal, observational design. Setting/participants: States of preferred and received life-sustaining treatments (cardio-pulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, and nasogastric tube feeding) were examined in 218 Taiwanese cancer patients by a latent transition model with hidden Markov modeling. Multivariate logistic regression modeling was used to examine factors facilitating/hindering concordance between preferred and received life-sustaining-treatment states. Results: Concordance between preferred and received life-sustaining-treatment states was poor (40.8%, kappa value (95% confidence interval): 0.05 [–0.03, 0.14]). Patients who accurately understood their prognosis and preferred comfort care were significantly more likely to receive preferred life-sustaining treatments before death than those who did not know their prognosis but wanted to know, those who were uniformly uncertain about what life-sustaining treatments they preferred to receive, and those who preferred nutritional support but declined other life-sustaining treatments. Patient age, physician–patient end-of-life-care discussions, symptom distress, and functional dependence were not associated with concordance between preferred and received life-sustaining-treatment states. Conclusion: Prognostic awareness and preferred states of life-sustaining treatments were significantly associated with concordance between preferred and received life-sustaining-treatment states. Personalized interventions should be developed to cultivate terminally ill cancer patients’ accurate prognostic awareness, allowing them to formulate realistic life-sustaining-treatment preferences and facilitating their receiving value-concordant end-of-life care.

scholarly journals Improving Care Experiences for Patients and Caregivers at End of Life: A Systematic Review

2020 ◽  
Vol 38 (1) ◽  
pp. 84-93
Author(s):  
Denise D. Quigley ◽  
Sara G. McCleskey
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Systematic Reviews ◽  
End Of Life Care ◽  
Hospice Care ◽  
Grey Literature ◽  
Research Approach ◽  
Spiritual Support ◽  
Life Care ◽  
Care Plans

Background: End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. We reviewed literature on improving patient and/or caregiver end-of-life care experiences. Design: We searched U.S. English-language peer-reviewed and grey literature after 2000 on adult end-of-life care experiences. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for quantitative studies, Enhancing Transparency in Reporting the Synthesis of Qualitative Research approach for qualitative studies, and Assessment of Multiple Systematic Reviews tool for the literature reviews. Setting: Palliative and hospice care. Population: Full-text abstraction of 84 articles, identifying 16 articles. Measures: Patient and/or caregiver end-of-life care experiences (captured through administrative data or direct report). Results: Articles examined palliative care experiences across settings; none studied hospice care experiences. Patients and/or caregivers assessed overall care experiences, clinician–staff interactions, provider communication, respect and trust, timeliness of care, spiritual support, caregiver knowledge of care plans, or bereavement support. Efforts aimed at improving end-of-life care experiences are limited and show mixed results. Conclusions: Literature on improving patient and/or caregiver end-of-life care experiences is emerging and focused on palliative care experiences. Evidence on improving hospice care experiences is lacking. Research on strategies for improving end-of-life care experiences should go beyond overall care experiences to include specific aspects of palliative and hospice care experiences.

Do patients with lung cancer recall physician-initiated discussions about planning for end-of-life care following disclosure of a terminal prognosis?

2016 ◽  
Vol 9 (2) ◽  
pp. 197-201 ◽  
Author(s):  
Gillian Horne ◽  
Sheila Payne ◽  
Jane Seymour
Keyword(s):  
Lung Cancer ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Terminally Ill ◽  
Care Planning ◽  
Life Care ◽  
Goals Of Care ◽  
Terminally Ill Patients ◽  
Terminal Prognosis

BackgroundCommunicating with patients about their prognosis and goals of care, including offering opportunities to engage in advance care planning (ACP) is widely recognised as best practice. Little is known about terminally ill patients’ perceptions of communication and ACP practice following disclosure of their terminal prognosis.ObjectivesTo examine whether terminally ill patients with lung cancer and their relatives recall conversations with disclosing physicians, about their concerns, goals of care or any offers to engage in ACP.MethodsQualitative study using semistructured interviews with patients and their family members. The study setting was a cancer centre and cancer unit in northern England.Results25 patients with advanced lung cancer (18 men and 7 women, aged 47–85) and 19 family members, mainly from lower social economic classes, took part in the study. Participants had little or no recall of physicians initiating discussions about their concerns, or goals of care and did not perceive that they had been provided with either information about or opportunities to engage in ACP. Some participants reported a sense of abandonment following the disclosure of a terminal prognosis. This sense was compounded by a range of difficult emotional experiences following the disclosure.ConclusionsIt may be inappropriate to initiate discussions about end-of-life care planning immediately following the disclosure of a terminal prognosis. To avoid patients feeling abandoned physicians need to consider how they or another appropriate person can provide information and opportunities for terminally ill patients to engage in a process of ACP.Trial registration number06/Q2307/22.

scholarly journals COMPARISON OF DOCUMENTED PATIENT CARE BEFORE AND AFTER IMPLEMENTATION OF END OF LIFE CARE PATHWAY FOR TERMINALLY ILL PATIENTS AT SHAUKAT KHANUM MEMORIAL CANCER HOSPITAL AND RESEARCH CENTRE

2018 ◽  
Vol 4 (3) ◽  
Author(s):  
Irum Ghafoor ◽  
Haroon Hafeez ◽  
Farhat Naz ◽  
Muhammad Abu Baker
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Pathway ◽  
Symptom Control ◽  
Terminally Ill ◽  
Research Centre ◽  
Life Care ◽  
Terminally Ill Patients ◽  
Cancer Hospital ◽  
Before And After

Purpose: Shaukat Khanum Memorial Cancer Hospital and Research Cancer primarily deals with cancer patients and has various departments which provide best-integrated lifesaving care. However, when patients who have been given all possible medical and oncological treatment still progress their disease, they are then referred for best supportive care to palliative care department. The aim of this paper was to audit documented care for palliative patients before and after implementation of end of life care (ELC) pathway.Materials and Methods: We used a retrospective method to audit 45 terminally ill patients over a period of 3 months. Then, a re-audit was done over a period of 3 months and data were collected for patients who were started on SKM-ELC pathway.Results: Results show that the implementation of ELC pathway, 67% of the patients were not prescribed PRN medications for symptom control, 20% of the patients were not reviewed for the need of assisted nutrition and for 20% of the patient’s primary team were not even notified that the patient is dying. After the ELC pathway implementation, it was found that 100% of patients were reviewed for PRN medications and assisted nutrition. Oncologists were timely notified that the patient is dying.Conclusion: In summary, we can say that implantation of ELC pathway has significantly improved documented patients care in all aspects.Key words: Cancer, care for dying, end of life care, goals of care pathway

Important aspects of end-of-life care. Survey of patients visiting the primary care office

2011 ◽  
Vol 152 (27) ◽  
pp. 1082-1092 ◽  
Author(s):  
Ágnes Csikós ◽  
Lajos Nagy ◽  
Csilla Busa ◽  
János Kállai
Keyword(s):  
Primary Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Psychosocial Support ◽  
Death And Dying ◽  
Life Care ◽  
Truth Telling ◽  
Convenience Sample ◽  
To Receive

Introduction: Death and dying are still taboo topics in Hungary. The care of the dying, the adequate relief of their symptoms and the psychosocial support of both patients and their caregivers are not yet well addressed. Aims: Authors obtained information about the feelings and thoughts of patients on death and dying, and about their expectations for end-of-life care. Methods: Mailed questionnaire was send to a convenience sample of 29 adult primary care offices where a total of 845 unselected patients completed the questionnaire. Results: More than two thirds (69%) of respondents would like to receive end of life care in their home. Only 19% of respondents would prefer to die in a hospital. Respondents’ greatest fear was to lose their autonomy (55%). The second most noted concern was fear from pain (38%). According to 93% of the participants, truth telling is very important in the event of terminal illness. Conclusions: Hungarian patients prefer to receive end of life care in their home. Our data support the need for improvement in three primary areas, physician communication skills, pain and symptom management, and expansion of home hospice care. Orv. Hetil., 2011, 152, 1082–1092.

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