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 Chinese Physicians’ Perceptions of Palliative Care Decision-making for Advanced Cancer Patients: A Qualitative Analysis at a Tertiary Hospital in Changsha, China

2021 ◽  
Author(s):  
Jessica Hahne ◽  
Xiaomin Wang ◽  
Rui Liu ◽  
Yuqiong Zhong ◽  
Xin Chen ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Medical Training ◽  
Family Members ◽  
Tertiary Hospital ◽  
Advanced Cancer Patients ◽  
Care Access ◽  
Care Decision

Abstract Background: Little previous research has been conducted outside of major cities in China to examine how physicians currently perceive palliative care, and to identify specific goals for training as palliative care access expands. This study explored physicians’ perceptions of palliative care decision-making for advanced cancer patients in Changsha, China.Methods: We conducted semi-structured qualitative interviews with physicians (n=24) specializing in hematology or oncology at a tertiary hospital. Results: Most physicians viewed palliative care as equivalent to end-of-life care, while a minority considered it possible to integrate palliative care with active treatment. Almost all physicians maintained separate conversations about palliative care with family members and patients, communicating more directly with family members than with patients about palliative care decisions. Physicians described experiencing ethical tension between the desire of family members to protect the patient from knowing they have advanced cancer, and the patient’s “right to decide” about palliative treatment. Physicians varied overall regarding perceptions of the role they should have in palliative care decision-making.Conclusions: As palliative care access expands in China, medical training should encourage earlier integration of palliative care for advanced cancer, address ethical issues faced by physicians communicating about palliative care, and establish guidance on the role of the physician in palliative care decision-making.

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

scholarly journals Palliative care for older South Asian migrants: A systematic review

2019 ◽  
Vol 18 (3) ◽  
pp. 346-358 ◽  
Author(s):  
Jahan Shabnam ◽  
Helle Timm ◽  
Dorthe S. Nielsen ◽  
Mette Raunkiaer
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Palliative Care ◽  
South Asian ◽  
Family Members ◽  
Care Practice ◽  
Care Needs ◽  
International Evidence ◽  
Migrant Families ◽  
Care Decision

AbstractObjectiveSouth Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers.MethodsA systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data.ResultsA total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families.Significance of resultsInvolvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.

Autonomous Decision Making and Japanese Tradition

1995 ◽  
Vol 4 (1) ◽  
pp. 71-74 ◽  
Author(s):  
Kazumasa Hoshino
Keyword(s):  
Decision Making ◽  
Medical Treatment ◽  
Family Members ◽  
Japanese Patients ◽  
Self Determination ◽  
Legal Obligation ◽  
Healthcare Decision ◽  
Autonomous Decision ◽  
Healthcare Decision Making

Crucial problems exist in understanding Japanese traditional customs with regard to autonomous decision making by patients in Japan. These problems are difficult to comprehend because they seem, by western standards, to defy logic. Questions that baffle those outside the Japanese tradition, include: Why do many Japanese patients hesitate to make medical treatment and care decisions for themselves without consulting family, close friends, or someone viewed as being in a superior position? Why do many Japanese physicians fail to disclose the truth directly to the patient, instead customarily conveying information to family members, despite the doctors' awareness of their legal obligation to protect the patient's privacy? Why do many Japanese physicians continue to question whether patients should be told the truth at all? What perpetuates Japan's widespread, but often unnoticed, neglect of the individual's right to self-determination in healthcare decision making?

scholarly journals Nursing Home Staff’s Perceptions of Healthcare Decision Making for Unbefriended Residents

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 384-384
Author(s):  
Hyejin Kim ◽  
Molly Perkins ◽  
Thaddeus Pope ◽  
Patricia Comer ◽  
Mi-Kyung Song
Keyword(s):  
Decision Making ◽  
Geographic Area ◽  
Care Physician ◽  
Healthcare Decision ◽  
Do Not Resuscitate ◽  
Best Interest ◽  
Care Plans ◽  
Course Of Action ◽  
Healthcare Decision Making ◽  
Facility Level

Abstract ‘Unbefriended’ adults are those who lack decision-making capacity and have no surrogates or advance care plans. Little data exist on nursing homes (NHs)’ healthcare decision-making practices for unbefriended residents. This study aimed to describe NH staff’s perceptions of healthcare decision making on behalf of unbefriended residents. Sixty-six staff including administrators, physicians, nurses, and social workers from three NHs in one geographic area of Georgia, USA participated in a 31-item survey. Their responses were analyzed using descriptive statistics and conventional content analysis. Of 66 participants, eleven had been involved in healthcare decision-making for unbefriended residents. The most common decision was do-not-resuscitate orders. Decisions primarily were made by relying on the resident’s primary care physician and/or discussing within a facility interdisciplinary team. Key considerations in the decision-making process included “evidence that the resident would not have wanted further treatment” and the perception that “further treatment would not be in the resident’s best interest”. Compared with decision making for residents with surrogates, participants perceived decision making for unbefriended residents to be equally-more difficult. Key barriers to making decisions included uncertainty regarding what the resident would have wanted in the given situation and concerns regarding the ethically and legally right course of action. Facilitators (reported by 52 participants) included some information/knowledge about the resident, an understanding regarding decision-making-related law/policy, and facility-level support. The findings highlight the complexity and difficulty of healthcare decision making for unbefriended residents and suggest more discussions among all key stakeholders to develop practical strategies to support decision-making practices in NHs.

Sign in / Sign up

Export Citation Format

Share Document