Medical oncology outpatients’ preferences and experiences with advanced care planning: a cross-sectional study

Chow

Journal of Clinical Nursing

et al. 2020

Self Cite

Aims and objectives To assess nurses’ perceptions of what constitutes optimal end‐of‐life (EOL) care in hospital and evaluate nurses’ perceived barriers to EOL care delivery. Background Care of dying patients is common in hospitals. However, little is known about the important elements of and barriers to optimal EOL care from key service providers’ perspective, which is crucial for quality EOL care in hospital settings. Method This is a cross‐sectional survey. Nurses practising in hospitals recruited by convenience sampling completed self‐report survey questionnaires. STROBE checklist was used in study reporting. Results One hundred and‐seventy‐five nurses participated in the survey. The majority (70%) had experience in caring for dying patients. The five most highly perceived factors constituting optimal EOL care included the following: “families know and follow patient's EOL wishes”; “patients emotional concerns identified and managed well”; “patients participating in decision‐making”; “EOL care documents stored well and easily accessed”; and “provide private rooms and unlimited visiting hours for families of dying patients”. Top five barriers were “doctors are too busy”; “nurses are too busy”; “insufficient private room/space”; “nurses have limited training in EOL care”; and “families have unrealistic expectations of patient's prognosis.” Multivariate regression analysis identified that nurses without experience in caring for dying patients reported a significantly higher number of perceived barriers towards EOL care (p = .012). Those with postgraduate degree training reported significantly fewer perceived barriers (p = .007). Conclusion Findings identified essential elements for optimal hospital EOL care not only involving patients and families in EOL decision and care, but also documentation and environmental issues in the healthcare system level and the needs for strengthening manpower and expertise at palliative care policy level. Relevance to clinical practice This study revealed quantitative data to inform health service managers and policy makers in terms of training and service development/ re‐design for EOL care in hospital settings.

Section: Methodsmentioning

confidence: 99%

Nurses’ perceptions of and barriers to the optimal end‐of‐life care in hospitals: A cross‐sectional study

Chow

Journal of Clinical Nursing

et al. 2020

Self Cite

“…Yet, physicians may not always engage in such care in a timely manner due to time constraints, a fear that transitioning to palliative care may "take away hope", or a lack of clarity as to who should provide such care i.e., the general practitioner (GP) or the treating oncologist [15][16][17][18][19]. Moreover, previous research reported that the quality of conversations regarding ACP can be improved [20,21], but also that patients' individual needs may not always be met [17,22]. Studies on the preferences and experiences of patients with incurable cancer regarding these conversations are scarce.…”

Section: Introductionmentioning

confidence: 99%

Experiences and needs of patients with incurable cancer regarding advance care planning: results from a national cross-sectional survey

Stegmann

Geerse

Tange

et al. 2020

Support Care Cancer

Introduction Patients faced with incurable cancer may experience a lack of support from their physician throughout and after treatment. Studies on the needs and experiences of these patients are scarce. In this study, we explored the needs and experiences of patients diagnosed with incurable cancer regarding the conversation, in which they were told that their cancer was incurable, the care received after this conversation, and their preferences regarding end of life conversations.Methods Data were cross-sectionally collected through a national online survey in the Netherlands (September 2018). Descriptive statistics and correlation coefficients were reported and subgroups were compared.Results 654 patients (mean age 60 years; 58% women) completed the survey. Patients were primarily diagnosed with breast cancer (22%) or a hematological malignancy (21%). Patients reported a strong need for emotional support during the conversation, in which they were told their cancer was incurable (mean score 8.3; scale 1-10). Their experienced satisfaction with received emotional support was mediocre (mean score 6.4; scale 1-10). Of those patients who felt like they did not receive any additional care (37%) after the diagnosis, the majority expressed a clear need for this kind of care (59%). Mostly, support pertained to psychosocial issues. Regarding conversations about the end of life, most patients (62%) expressed a need to discuss this topic, and preferred their healthcare provider to initiate this conversation. ConclusionCare for patients with incurable cancer can be further improved by tailoring conversations to specific needs and timely providing appropriate supportive care services.

“…In the family-centered decision-making culture in Korea, decisions about life-sustaining treatments have conventionally been made by the family [ 2 , 18 ]. Therefore, there is a need for opportunities and communication channels to properly discuss the EOLC needs of patients and their families, and healthcare providers should actively involve patients and their families in these processes [ 19 ]. Shared decision-making involving patients, families, and healthcare providers may alleviate patients’ and families’ psychological burden of having to make a choice [ 20 ].…”

Section: Discussionmentioning

confidence: 99%

We Want More Than Life-Sustaining Treatment during End-of-Life Care: Focus-Group Interviews

Kim

2021

IJERPH

We qualitatively investigated end-of-life care needs. Data were collected via focus-group interviews with three groups: young adults, middle-aged adults, and older adults. The key question was, “What kind of care would you like to receive at the end of life?” Interview data were transcribed and analyzed using content analysis. End-of-life care needs were classified into six categories: life-sustaining treatment needs, physical care needs, emotional care needs, environmental needs, needs for respect, and needs for preparation for death. Because the Korean culture is family-oriented and talking about death is taboo, Korean patients at the end of their life do not make decisions about life-sustaining treatment or actively prepare for death. Therefore, to provide proper end-of-life care, conversations and shared decision-making among patients and their families are crucial. Further, we must respect patients’ dignity and help them achieve a good death by understanding patients’ basic care preferences. Future research should continue examining end-of-life care needs that reflect the social and cultural context of Korea to inform instrument development.