Elephant in the room - Family members´ perspectives on advance care planning

Kastbom, Lisa; Karlsson, Märit; Falk, Magnus; Milberg, Anna

doi:10.1080/02813432.2020.1842966

Cited by 11 publications

(20 citation statements)

References 26 publications

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“…Better collaboration between GPs and other specialists should also be encouraged. Collaborative models appear promising for effective ACP discussions [ 25 , 26 , 27 ], which is in accordance with Hungarians’ view that EOL conversation requires a cooperation between HCPs, and between HCPs and family members. A randomized controlled trial in Norway has confirmed that standardized education programs, clearly defined roles and responsibilities improve the implementation of ACP [ 28 ].…”

Section: Discussionmentioning

confidence: 53%

Who should talk with patients about their end-of-life care wishes? A nationwide survey of the Hungarian population

Busa

Pozsgai

Zeller

et al. 2022

Scandinavian Journal of Primary Health Care

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Objective To explore the needs and opportunities of the general population to communicate their end-of-life care wishes and to investigate what roles are assigned to healthcare providers and family members in end-of-life care discussions. Design A cross-sectional social survey was carried out in Hungary. Descriptive analysis and analysis of variance were performed. Setting Nationwide survey of the Hungarian general population. Subject The sample ( n = 1100) was designed to represent the adult population as per distribution by gender, age and geographical region. Main outcome measures Needs and opportunities of the general population to communicate end-of-life care wishes. Results 72% of participants found it important to discuss their end-of-life care wishes with someone. Six out of ten believed that it was also the GPs’ task to talk with the patients about their end-of-life care wishes. An almost equal level of engagement was expected from healthcare providers (80%) -especially physicians (72%)- and family members (75%) in end-of-life conversations. However, only 36% of participants felt that there was someone among their healthcare providers, and 56% of them had a family member or friend with whom they could speak openly about death, dying and preparing for death. Conclusion Compared to their needs, the general population had fewer opportunities to speak about death, dying and preparing for death. Training programs for healthcare providers, particularly GPs, and public awareness campaigns may support the broader application of advance care planning in Hungary. Key Points Current guidelines recommend that GPs initiate advance care planning discussions. However, little is known with whom the general population wish to discuss their end-of-life care preferences and with whom there is an opportunity to do so. An almost equal level of engagement was expected from healthcare providers -especially physicians- and family members in end-of-life conversations. Most of the general population thought that participation in end-of-life discussions was also the GPs’ task. The majority of participants reported that there was no one among their healthcare providers and a sizable minority felt that there was no one among their family members or friends with whom they could talk openly about death, dying, and preparing for death. The highest levels of unmet needs regarding end-of-life conversations with healthcare providers were found among those who considered it important to discuss their end-of-life care wishes.

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Section: Discussionmentioning

confidence: 53%

Who should talk with patients about their end-of-life care wishes? A nationwide survey of the Hungarian population

Busa

Pozsgai

Zeller

et al. 2022

Scandinavian Journal of Primary Health Care

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“…In this study, prescriptions of palliative drugs for symptom relief prior to death, were twice as common among patients with advance care planning, compared to those without. Besides the principles of beneficence and non-maleficence, as well as respecting the patient’s autonomy, advance care planning is central to enabling family members to prepare themselves for the impending deterioration and death of the patient [ 30 ]. It seems important to support healthcare staff to both initiate advance care planning in nursing home patients, and involve the patient and family members in the care planning and preparation of EOL care.…”

Section: Discussionmentioning

confidence: 99%

Prevalence, content and significance of advance care planning in nursing home patients

Kastbom

Falk

Karlsson

et al. 2022

Scandinavian Journal of Primary Health Care

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Objective Studies on advance care planning in nursing homes are rare, and despite their demonstrated favourable effects on end-of-life care, advance care plans are often lacking. Therefore, we wished to explore: (i) the prevalence of advance care plans in a Swedish nursing home setting using two different definitions, (ii) the content of advance care plans, (iii) adherence to the content of care plans and (iv) possible associations between the presence of advance care planning and background characteristics, physician attendance and end-of-life care. Design Retrospective chart review. Setting Twenty-two nursing homes in Sweden. Subjects A total of 367 deceased patients (included between 1 June 2018 and 23 May 2020) who had lived in nursing homes. Main outcome measures Electronic health record data on the prevalence of advance care plans with two different definitions and variables regarding background characteristics, physician attendance and end-of-life care, were collected. Results Of the study population, 97% had a limited care plan (ACP I) documented. When using the comprehensive definition (ACP II), also including patient’s preferences and involvement of family members in advance care planning, the prevalence was 77%. Patients with dementia more often had care plans, and a higher physician attendance was associated with presence of advance care plans. Prescription of palliative drugs and information to family members of the patient’s deterioration and impending death were more common in patients with care plans compared to those where such plans were missing. There was adherence to the care plan content. Conclusion In contrast to previous research, this study showed a high prevalence of advance care plans in nursing home patients. Patients with care plans more frequently received prescriptions of palliative drugs and their family members were informed to a greater extent about the patient’s deterioration and impending death compared to those without care plans. These aspects are often seen as vital components of good palliative care. Key points Studies on advance care planning in nursing homes are rare, and despite their demonstrated positive effects on end-of-life care, advance care plans are often lacking. The present study revealed a high prevalence of advance care plans (77-97% depending on definition) in nursing home patients. Patients with dementia more often had advance care plans, and a higher physician attendance was associated with presence of care plans. Advance care plans were positively associated with components of good palliative care, such as prescriptions of palliative drugs and information to family.

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“…However, it is important for healthcare staff to initiate EOL conversations, so that patient's needs and their family's preferences are properly addressed. 29 It was also found that some doctors have to follow the family's wishes, even if it was against the professional judgement of what was appropriate for the patient. [48][49][50] For instance, against the doctors' recommendations, some family might still desire more unnecessary treatments just to sustain a dying patient's life when he or she could not make an EOL decision.…”

Section: Different Cultural Perspectives On Eol Communicationmentioning

confidence: 99%

“…20 83 Fostering positivity in EOL communication as a clinician was also viewed to be important. 29 When family members and patients clearly understand one another's EOL preferences, decisions on treatments and palliative care could effectively address patients' needs. 79 There is also plenty of material to discuss with the significance of timing in EOL communication.…”

Section: Open Accessmentioning

confidence: 99%

“… 28 29 In one international survey of palliative care professionals, more than 80% of the participants agreed that more practical instructions during communication with patients’ family members would enhance EOL decision-making. 29 30 Recently, the English Parliamentary and Health Service Ombudsman 31 found that the main area of health professionals’ complaints about EOL care was communication failure with terminally ill patients and their family members. Without adequate family involvement, promoting the holistic care of patients during their EOL is difficult.…”

Section: Introductionmentioning

confidence: 99%

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Role of patients’ family members in end-of-life communication: an integrative review

et al. 2023

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ObjectivesTo synthesise empirical findings on the role of family in end-of-life (EOL) communication and to identify the communicative practices that are essential for EOL decision-making in family-oriented cultures.SettingThe EOL communication settings.ParticipantsThis integrative review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting guideline. Relevant studies published between 1 January 1991 and 31 December 2021 were retrieved from four databases, including the PsycINFO, Embase, MEDLINE and Ovid nursing databases, using keywords with meanings of ‘end-of-life’, ‘communication’ and ‘family’. Data were then extracted and coded into themes for analysis. The search strategy yielded 53 eligible studies; all 53 included studies underwent quality assessment. Quantitative studies were evaluated using the Quality Assessment Tool, and Joanna Briggs Institute Critical Appraisal Checklist was used for qualitative research.Primary and secondary outcome measuresResearch evidence on EOL communication with a focus on family.ResultsFour themes emerged from these studies: (1) conflicts in family decision-making in EOL communication, (2) the significance of timing of EOL communication, (3) difficulty in identification of a ‘key person’ who is responsible for decisions regarding EOL care and (4) different cultural perspectives on EOL communication.ConclusionsThe current review pointed towards the importance of family in EOL communication and illustrated that family participation likely leads to improved quality of life and death in patients. Future research should develop a family-oriented communication framework which is designed for the Chinese and Eastern contexts that targets on managing family expectations during prognosis disclosure and facilitating patients’ fulfilment of familial roles while making EOL decision-making. Clinicians should also be aware of the significance of the role of family in EOL care and manage family members’ expectations according to cultural contexts.

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Elephant in the room - Family members´ perspectives on advance care planning

Cited by 11 publications

References 26 publications

Who should talk with patients about their end-of-life care wishes? A nationwide survey of the Hungarian population

Who should talk with patients about their end-of-life care wishes? A nationwide survey of the Hungarian population

Prevalence, content and significance of advance care planning in nursing home patients

Role of patients’ family members in end-of-life communication: an integrative review

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