End-of-life healthcare decision-making: The intermediary role of the ethicist in supporting family caregivers and health professionals

Work ◽  
2011 ◽  
Vol 40 (1) ◽  
pp. 63-73 ◽  
Author(s):  
Rosemary C. MacDonald ◽  
Lori E. Weeks ◽  
Gloria McInnis-Perry
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Family Caregivers ◽  
Health Professionals ◽  
Healthcare Decision ◽  
Healthcare Decision Making ◽  
Intermediary Role

scholarly journals Data Mining Nursing Care Plans of End-of-Life Patients: A Study to Improve Healthcare Decision Making

2012 ◽  
Vol 24 (1) ◽  
pp. 15-24 ◽  
Author(s):  
Fadi Almasalha ◽  
Dianhui Xu ◽  
Gail M. Keenan ◽  
Ashfaq Khokhar ◽  
Yingwei Yao ◽  
...  
Keyword(s):  
Data Mining ◽  
Decision Making ◽  
End Of Life ◽  
Nursing Care ◽  
Healthcare Decision ◽  
Care Plans ◽  
Healthcare Decision Making

How family caregivers assist with upstream health care decision making by community-dwelling persons with advanced cancer: A qualitative study.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 13-13
Author(s):  
J Nicholas Dionne-Odom ◽  
Deborah Ejem ◽  
Rachel Wells ◽  
Amber Barnato ◽  
Richard Taylor ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Metastatic Cancer ◽  
Family Members ◽  
Community Dwelling ◽  
Healthcare Decision ◽  
Healthcare Decision Making ◽  
Care Decision

13 Background: In the palliative care context, the family caregiver role in patients’ healthcare decision-making has focused on being a surrogate decision-maker at end of life. Less is known about family caregiver’s role in supporting upstream patient decision-making in advanced cancer. Methods: Qualitative descriptive study consisting of one-on-one, semi-structured interviews with persons with metastatic cancer and their family caregivers. We elicited family members’ perspectives on how they assist their relatives with any current and prospective healthcare decisions. Transcribed interviews were analyzed using a thematic analysis approach. Co-investigators reviewed and refined themes. Results: Caregivers (n = 20) averaged 56 years of age and were mostly female (95%), White (85%), and the patient’s partner/spouse (70%). Patients (n = 18) averaged 58 years of age and were mostly male (67%) in “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ decision-making were: 1) seeking information about the cancer, its trajectory, and different treatments options; 2) identifying treatment and disease decision points, including decisions about seeking emergent care; 3) ensuring family members have a common understanding of the patient’s plan of care; 4) initiating and facilitating conversations with patients about coping, values, beliefs, and “what if” scenarios about current and potential future health states and treatments; 5) implementing choices (e.g., providing transportation) and addressing “spillover” decisions (e.g., work arrangements) resulting from medical treatment choices; and 6) making upstream healthcare decisions on behalf of patients who preferred to have decisions made by their family caregivers. Conclusions: These data highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early palliative care decision support interventions for family caregivers.

scholarly journals Adapting ENABLE for patients with advanced cancer and their family caregivers in Singapore: a qualitative formative evaluation

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Grace Meijuan Yang ◽  
J. Nicholas Dionne-Odom ◽  
Yi Han Foo ◽  
Ariel Hui Mei Chung ◽  
Nur Haidah Ahmad Kamal ◽  
...  
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Cancer Diagnosis ◽  
Formative Evaluation ◽  
Complementary Therapy ◽  
Healthcare Decision ◽  
Structured Interviews ◽  
Face To Face ◽  
Healthcare Decision Making

Abstract Background ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model. Methods Qualitative formative evaluation with a thematic analysis approach in two hospitals in Singapore, involving patients (n = 10), family caregivers (n = 11) and healthcare professionals (n = 10) who care for patients with advanced cancer. Semi-structured interviews were conducted to explore (i) the main needs and challenges facing individuals with advanced cancer and their family caregivers; (ii) patient involvement in healthcare decision making; and (iii) content and delivery of ENABLE. Results While physical needs were largely well met, participants expressed that psychosocial care was delivered too late in the illness trajectory. Healthcare decision making approaches varied from a patient-centred shared decision-making model to a family-centred model where patients may not know their cancer diagnosis and prognosis. The content was considered to be relevant, comprehensive and practical; financial assistance, adjustment to body image, and evaluation of complementary therapy were also recommended. Face-to-face rather than telephone sessions were preferred to facilitate rapport building. Conclusions ENABLE was broadly acceptable with some modifications, including adjusting the content to ensure it can be delivered even if the patient is not fully aware of cancer diagnosis and delivering the first session face-to-face with flexibility for subsequent sessions.

scholarly journals How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study

PLoS ONE ◽  
2019 ◽  
Vol 14 (3) ◽  
pp. e0212967 ◽  
Author(s):  
J. Nicholas Dionne-Odom ◽  
Deborah Ejem ◽  
Rachel Wells ◽  
Amber E. Barnato ◽  
Richard A. Taylor ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Healthcare Decision ◽  
Healthcare Decision Making

The Role of Cost-Consequence Analysis in Healthcare Decision-Making

1998 ◽  
Vol 13 (3) ◽  
pp. 277-288 ◽  
Author(s):  
Josephine A. Mauskopf ◽  
John E. Paul ◽  
David M. Grant ◽  
Andy Stergachis
Keyword(s):  
Decision Making ◽  
Healthcare Decision ◽  
Consequence Analysis ◽  
Healthcare Decision Making ◽  
Cost Consequence

Advance directives and end-of-life decisions in Switzerland: role of patients, relatives and health professionals

2015 ◽  
Vol 8 (4) ◽  
pp. 475-484 ◽  
Author(s):  
Sophie Pautex ◽  
Claudia Gamondi ◽  
Yves Philippin ◽  
Grégoire Gremaud ◽  
François Herrmann ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Directives ◽  
Health Professionals ◽  
Medical Information ◽  
Depression Scale ◽  
Well Being ◽  
Assessment System ◽  
Spiritual Well Being

BackgroundLittle is known in Europe about end-of-life (EOL) decisions and advance directives (AD), particularly in patients with severe advanced disease. Switzerland is a multicultural and multilingual federal country and has the particularity of being divided into four linguistic and cultural regionsObjectiveTo understand better in different regions of Switzerland which specific patient's characteristics could have an impact on their decision to complete AD or not.Design/setting/participantsProspective study conducted in four palliative care units. Patients with an advanced oncological disease, fluent in French, German or Italian and with a Mini-Mental State Examination >20 were included. Demographic data, symptom burden (Edmonton Symptom Assessment System, ESAS; Hospital Anxiety and Depression Scale, HADS) and spiritual well-being (Functional Assessment of Chronic Illness Therapy-Spiritual well-being, FACIT-sp) have been assessed. A structured questionnaire has been completed by patients, their relatives and health professionals.Results143 patients were included (mean age 68.3 years; 62 male). 41 completed ADs. No particular features were associated with the completion of ADs. Most patients were satisfied with the medical information received. A third of them were not worrying about their future, especially those living in the German-speaking part. Should they become unable to communicate, 87 expected their relative to transmit their own wishes, but only 38 had spoken recently with them about what they wanted. 23 of the 69 included relatives would like to play a more active role in decision-making.ConclusionsThese results illustrate the fact that terminally ill patients wish to be active in decision-making, but only seldom transmit their wishes to their relative or complete a written document. The discussion about ACP should be defined according to the particularity of each region and the role of healthcare professionals’ attitudes towards ADs, but we should also be creative and find other ways to promote shared decision-making.

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