Creation of a Nursing Intervention Model to Support Decision Making by Elderly Advanced Cancer Patients and Their Families About the Place of Death, and Evaluation of the Model's Appropriateness and Clinical Applicability

BACKGROUND To support advanced cancer patients, for whom standard therapy is no longer avail-able, and their oncologists in therapy decisions, we aim to develop a decision-making aid (DA) in a multi-phased bicentric study. The DA aims to help patients to better un-derstand risks and benefits of available treatment options including the options of standard palliative care, off-label drug use within an individual treatment plan and involvement in clinical trials. OBJECTIVE This study protocol outlines the development and testing of a DA in a pre-post design study targeting at a heterogeneous population of advanced cancer patients. METHODS In phase I, The DA will be developed after of decisional needs of patients and views of health care providers based on face-to face interviews and focus groups discus-sions. Subsequently, the DA will be alpha-tested and redrafted, as necessary, in phase II. In phase III, the DA will be (1) beta-tested with patients and oncologists and (2) assessed by experts. In the last project phase, we will run a pre-post design study with n= 70 doctor-patient-encounters to access improvements on primary study outcome, i.e. patients’ level of decisional conflict. In addition, the user ac-ceptance will be tested. RESULTS Interviews with cancer patients, oncologists and health care providers have been completed. CONCLUSIONS A unique feature of this study is the development of a DA for patients with different types of advanced cancer, which covers a wide range of topics relevant for patients near the end of life such as forgoing cancer-specific therapy and patients’ inclusion in clinical trials. CLINICALTRIAL NCT04606238 https://clinicaltrials.gov/ct2/show/NCT04606238

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A prospective cohort study of stability in preference for place of death among patients with stage IV cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.e24148 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. e24148-e24148

Author(s):

Ling En Koh ◽

Chetna Malhotra ◽

Eric Finkelstein ◽

Keyword(s):

Logistic Regression ◽

Cohort Study ◽

Relative Risk ◽

Cancer Patients ◽

Advanced Cancer ◽

Patient Preference ◽

Place Of Death ◽

Advanced Cancer Patients ◽

Baseline Preference ◽

Over Time

e24148 Background: Advanced care planning (ACP) involves discussion and documentation of patients’ care preferences including their preference for place of death. This process assumes that patients’ preference will not change over time; yet evidence for this is inconclusive. The primary aim of this study was to test whether patient preference for place of death changes over time and to identify factors associated with this change. We also assessed whether patients who do not change their preference for place of death during the study duration have greater congruence between actual and baseline preference for place of death. Methods: As part of an ongoing cohort study, we surveyed 466 advanced cancer patients every 6 months in Singapore for a period of two years. We asked patients their preference for place of death (home/ institution/ unclear). We assessed proportion of patients who changed their preference from baseline and at every time point. We ran univariable and multivariable multinomial logistic regression models to assess the association between change in preference for place of death and patient socio-demographics (gender, race, education, housing, marital status) as well as time varying variables (quality of life (Functional Assessment of Cancer Therapy- General), pain severity (Brief Pain Inventory), psychological distress (Hospital Anxiety and Depression Scale), any intervening hospitalization). We used a logistic regression model to assess if no change in preference during the study period was associated with congruence between actual and baseline preference for place of death. Results: More than a quarter of patients changed their preference for place of death every 6 months with 55% changing their preference at least once within 2 years. There was no clear trend in direction of change in preference. Patients who were psychologically distressed at the time of survey had a greater relative risk of changing their preferred place of death to home (Relative Risk Ratio (RRR) 1.81; 95% Confidence Interval (CI): 1.16-2.82) and to institution (RRR 2.00; 95% CI: 1.17-3.42) relative to no change in preference. Having no change in preference for place of death during the study period was not associated with congruence between actual and baseline preference for place of death. Conclusions: The study provides evidence of instability in advanced cancer patients’ preference for place of death. It calls into question the validity of patient preference for place of death recorded on ACP documents and suggests that we should regularly re-evaluate these documents.

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Is shared decision-making vanishing at the end-of-life? A descriptive and qualitative study of advanced cancer patients’ involvement in specific therapies decision-making

BMC Palliative Care ◽

10.1186/s12904-015-0057-4 ◽

2015 ◽

Vol 14 (1) ◽

Cited By ~ 3

Author(s):

Yvan Beaussant ◽

Florence Mathieu-Nicot ◽

Lionel Pazart ◽

Christophe Tournigand ◽

Serge Daneault ◽

...

Keyword(s):

Decision Making ◽

Qualitative Study ◽

End Of Life ◽

Cancer Patients ◽

Shared Decision Making ◽

Advanced Cancer ◽

Shared Decision ◽

Advanced Cancer Patients

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Impact of Culture and Religion on End-of-Life Decisions Among Advanced Cancer Patients in Developing Countries

Innovation in Aging ◽

10.1093/geroni/igaa057.787 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 244-244

Author(s):

Justina Yevu Johnson ◽

Lori Popejoy

Keyword(s):

Decision Making ◽

Developing Countries ◽

End Of Life ◽

Cancer Patients ◽

Family Caregivers ◽

Advanced Cancer ◽

Healthcare Providers ◽

Advanced Cancer Patients ◽

End Of Life Decisions ◽

Primary Family

Abstract Palliative care and end of life decisions are important components of quality care at the end-of-life. Individual’s perception of cancer diagnosis is affected by their customs and traditions, religious orientations and stigma. Culture and religion as a social determinant of health affects people’s interpretation of health and illness and is a major factor in deciding the type of care at end of life and death. The purpose of the review was to identify factors related to culture and/or religion that impact decision making at end of life among advanced cancer patients their primary family caregivers and healthcare providers. An extensive literature search was conducted in Psych Info, PubMed, Philosophy Index, Atlas Religion, and Academic Search Premier databases for primary studies on the topic. Primary studies conducted only in developing countries and among healthcare providers, advanced cancer patients and their primary family caregivers were included. Five studies met the inclusion criteria: two primary studies, one methodological paper, and two on perspectives. The studies reported economic status of the patient, family, culture, and religious beliefs as factors that affected decision making at the end of life. Improving cancer care in developing countries requires the accommodation of the culture, traditions, and religious beliefs of both healthcare providers, patients and family. Culturally appropriate care model is therefore needed to enhance palliative and end of life care in developing countries. Leininger’s Cultural Care Theory seem an appropriate path to take.

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