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.

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

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.

End-of-life care: Empowering cancer patients with information and choices

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. e20739-e20739
Author(s):  
K. Tucker
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Negative Impact ◽  
Terminally Ill ◽  
Life Care ◽  
Terminally Ill Patients ◽  
Aid In Dying ◽  
Practice Review ◽  
Life Options ◽  
End Of Life Decision

e20739 Background: Terminally ill patients want information and choices, including aid in dying, as they confront death due to cancer and other terminal illnesses. Physicians treating such patients want to feel safe in having candid conversations with patients about their wishes and to provide aid in dying when appropriate. Methods: Review the law governing end of life decision making, including aid in dying. Review the data from Oregon, which has more than 10 years experience with a regulated practice. Review what has been learned in OR, and how that is transferring to other states making aid in dying an end of life option. Results: Oregon's experience shows that when aid in dying is a legal option for mentally competent terminally ill patients overall end of life care improves. Conversations between physicians and patients are more open and candid; Referrals to hospice increase and occur earlier; clinician enrollment in CE for pain and symptom management increase; rx of strong pain medication increase; more patients die at home; patients are comforted to have aid in dying as an option; there is no negative impact on the practice of medicine. Conclusions: Terminally ill patients should be able to recieve comprehensive counseling about all end of life options. There is a growing trend of support for expanding end of life options to include aid in dying for mentally competent terminally ill patients who find themselves trapped in an unbearable dying process. No significant financial relationships to disclose.

Medical informatics: Documenting quality of end-of-life oncologic care.

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 311-311
Author(s):  
Jennifer Carrie Obel ◽  
Diletta Orlando-Brooks ◽  
Chad Konchak ◽  
Abigail Harper ◽  
Michael Marschke ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Terminally Ill ◽  
Data Retrieval ◽  
Time Frame ◽  
Life Care ◽  
Inappropriate Use ◽  
Terminally Ill Patients ◽  
Use Of Resources

311 Background: NorthShore University HealthSystem has created, via the Electronic Health Record (EHR), quarterly reports to measure quality of care for patients who die of cancer during the reporting time frame. Specific reports for 22 oncology providers and measurements across the population will be derived. Reports are automated with seamless data retrieval based on algorithms designed through the use of discrete, searchable entry fields. Goals include establishing a pre-report baseline, educating oncologists about their terminally ill patients’ outcomes and documenting improvements in end-of-life care through educational initiatives for patients and providers. Methods: To standardize reporting, a cohort of terminally ill patients was created based on QOPI definitions (Denominator). A set of quality end points to describe cancer utilization near the end of life was added as Numerator Values, to establish rates of potential inappropriate use of resources. Results: The OP, oncology EHR was changed to allow ADN/CSO placement that carry over to the IP EHR (hyperlink in patient header). The average time between a patient’s first OP, oncology visit and when the oncologist placed ADN/CSO will be calculated. ADN/CSO reports will be stratified by a patient’s age, race and oncologist. Each separate report will be validated prior to the “go live” phase. Conclusions: These metrics allow routine hypothesis generating queries of end-of-life care to assess compliance with quality measures. [Table: see text]

Aggressive End-of-Life Care and Symptom Relief Treatments in Terminally Ill Patients Who Had Discussed Withdrawal of Mechanical Ventilation: A Hospital-Based Observational Study

2020 ◽  
Vol 37 (11) ◽  
pp. 897-903
Author(s):  
Hsiao-Ting Chang ◽  
Ming-Hwai Lin ◽  
Chun-Ku Chen ◽  
Tzeng-Ji Chen ◽  
Shinn-Jang Hwang
Keyword(s):  
Mechanical Ventilation ◽  
Observational Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Symptom Relief ◽  
Terminally Ill ◽  
Shared Care ◽  
Life Care ◽  
Terminally Ill Patients ◽  
The Status

Objective: The aim of this study was to explore the status of aggressive end-of-life care and symptom relief treatments in terminally ill patients who had discussed the withdrawal of mechanical ventilation. Methods: This research is a retrospective observational study based on a chart review. Terminal patients aged ≥20 years, who were intubated with mechanical ventilation support, who underwent hospice-shared care, and who personally, or whose close relatives, had discussed the withdrawal of mechanical ventilation with hospice-shared care team members in a tertiary hospital in Taiwan during 2012 to 2015 were included. Demographics, medical conditions, and aggressive end-of-life care, including hospitalization, use of vasopressors, artificial nutrition, tube feeding, antibiotics, and symptom relief treatments including the use of opioids, steroids, and sedatives, were identified. The modes of care and treatments of patients by the status of withdrawal of mechanical ventilation were compared. Results: A total of 141 patients had discussed the withdrawal of mechanical ventilation, and 111 (78.7%) had been withdrawn. Aggressive end-of-life care was noted in all patients regardless of mechanical ventilation status. There were no significant differences in the number and pattern of aggressive end-of-life care measures between patients who had or had not been withdrawn. There were significantly higher rates of symptom relief treatments used in patients who had been withdrawn. Conclusions: Aggressive end-of-life care is common for patients who have discussed the withdrawal of mechanical ventilation. There are significantly higher rates of symptom relief medications administered in patients who have been withdrawn from mechanical ventilation.

Managing End-of-Life Care: Comparing the Experiences of Terminally Ill Patients in Managed Care and Fee for Service

2002 ◽  
Vol 50 (12) ◽  
pp. 2077-2083 ◽  
Author(s):  
Julia Slutsman ◽  
Linda L. Emanuel ◽  
Diane Fairclough ◽  
Debra Bottorff ◽  
Ezekiel J. Emanuel
Keyword(s):  
Managed Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Terminally Ill ◽  
Fee For Service ◽  
Life Care ◽  
Terminally Ill Patients

scholarly journals The Effect of Guided Imagery on Death Anxiety, Empathy and Attitude towards Terminally Ill Patients in Oncology Nurses

2020 ◽  
Vol 5 (1) ◽  
Keyword(s):  
End Of Life ◽  
Experimental Research ◽  
End Of Life Care ◽  
Death Anxiety ◽  
Guided Imagery ◽  
Terminally Ill ◽  
Oncology Nurses ◽  
Reactivity Index ◽  
Life Care ◽  
Terminally Ill Patients

Objective: Enabling oncology nurses to become aware of their own mortality is important to provide a dignity and quality end of life care. The aim of this study is to evaluate the effect of guided imagery on death anxiety, empathy and attitude towards terminally ill patients in oncology nurses. Guided imagery may be an effective tool to help nurses at the end of life care. Methods: This quasi-experimental research included 43 oncology nurses who were chosen using total population sampling method. The data was collected by using the nurse information form, the “Thorson-Powell Death Anxiety Scale”, the “Approach to Death and Dying Patients Attitude Scale”, the “Interpersonal Reactivity Index” Results: The nurses in the intervention and control groups were similar in terms of characteristics (P> .05). In intragroup comparison of the experimental group, it was determined that while both death anxiety and empathy levels increased, scores of avoiding terminally ill patients of nurses also decreased (P< .05). On the other hand, in the intergroup comparison, it did not affect death anxiety and attitude towards the terminally ill patients (P> .05); however, it was found that it increased empathy levels of nurses (P< .05). Conclusion: Guided Imagery may be an effective technique in oncology nurses to improve positive attitude towards the terminally ill patients and increase empathy level. Using guided imagery can facilitate clinical nursing practice by changing nurses’ perspective towards the nearing people end of life. However, further experimental research are needed to validate this study.

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