Having the difficult conversations about the end of life

Barclay, Stephen; Maher, Jane

doi:10.1136/bmj.c4862

Cited by 55 publications

(49 citation statements)

References 29 publications

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“…40 While efforts have been made to increase physician comfort with ACP conversations through communication trainings, 33,34,38,[41][42][43][44] medical education may need to incorporate updated illness models for non-malignant chronic diseases to help foster physician awareness of the relevance of ACP for patients with heart failure. 45 Even though patient openers were offered in just 13 of 71 consultations, the finding that some patients proactively and explicitly broach topics considered to be of a difficult and sensitive nature, such as prognosis, stands in stark contrast to findings from earlier studies characterizing a "conspiracy of silence" between patients, providers and family members over these topics. [46][47][48][49][50] Instead, some patients in our study sought information from their providers regarding their prognosis and often received an inadequate response.…”

Section: Discussioncontrasting

confidence: 50%

Missed Opportunities for Advance Care Planning Communication During Outpatient Clinic Visits

et al. 2011

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BACKGROUND: Early provider-patient communication about future care is critical for patients with heart failure (HF); however, advance care planning (ACP) discussions are often avoided or occur too late to usefully inform care over the course of the disease. OBJECTIVE: To identify opportunities for physicians to engage in ACP discussions and to characterize physicians' responses to these opportunities. DESIGN: Qualitative study of audio-recorded outpatient clinic visits. PARTICIPANTS: Fifty-two patients≥65 years recently hospitalized for HF with one or more post-discharge follow-up outpatient visits, and their physicians (n=44), at two Veterans Affairs Medical Centers. APPROACH: Using content analysis methods, we analyzed and coded transcripts of outpatient follow-up visits for 1) patient statements pertaining to their future health or their future physical, psychosocial and spiritual/existential care needs, and 2) subsequent physician responses to patient statements, using an iterative consensus-based coding process. RESULTS: In 13 of 71 consultations, patients expressed concerns, questions, and thoughts regarding their future care that gave providers opportunities to engage in an ACP discussion. The majority of these opportunities (84%) were missed by physicians. Instead, physicians responded by terminating the conversation, hedging their responses, denying the patient's expressed emotion, or inadequately acknowledging the sentiment underlying the patient's statement. CONCLUSIONS: Physicians often missed the opportunity to engage in ACP despite openers patients provided that could have prompted such discussions. Communication training efforts should focus on helping physicians identify patient openers and providing a toolbox to encourage appropriate physician responses; in order to successfully leverage opportunities to engage in ACP discussions.KEY WORDS: qualitative research; advance care planning; heart failure; physician-patient communication.

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Section: Discussioncontrasting

confidence: 50%

Missed Opportunities for Advance Care Planning Communication During Outpatient Clinic Visits

et al. 2011

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“…37,38 Although quality end-oflife care indicators are complex to define and measure, [39][40][41][42][43][44] dying at home is often described as an important end-of-life aim. 14 Clarifying such preferences is challenging even for individuals without cognitive impairment, 13,[45][46][47][48] but particularly so with dementia. 49 Our finding that the majority of 'older old' people died away from home, particularly those living in the community and, of those, especially the most cognitively impaired, may suggest that community care could not or did not provide the support that community-dwelling individuals (or perhaps their informal carers 50 ) needed prior to death.…”

Section: Discussionmentioning

confidence: 99%

“…283 (100) 15 (22) 18 (20) All 76 (66), [57][58][59][60][61][62][63][64][65][66][67][68][69][70][71][72][73][74][75] 35 (55), 44 (42), [33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49][50][51][52] 155 (55) …”

Section: (100)mentioning

confidence: 99%

Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

et al. 2013

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Background: Despite fast-growing 'older old' populations, 'place of care' trajectories for very old people approaching death with or without dementia are poorly described and understood. Aim: To explore end-of-life transitions of 'older old' people across the cognitive spectrum. Design: Population-based prospective cohort (United Kingdom) followed to death. Setting/participants: Mortality records linked to 283 Cambridge City over-75s Cohort participants' cognitive assessments <1 year before dying aged ≥85 years. Results: Overall, 69% were community dwelling in the year before death; of those with severe cognitive impairment 39% were community dwelling. Only 6% subsequently changed their usual address. However, for 55% their usual address on death registration was not their place of death. Dying away from the 'usual address' was associated with cognition, overall fewer moving with increasing cognitive impairment -cognition intact 66%, mildly/moderately impaired 55% and severely impaired 42%, trend p = 0.003. This finding reflects transitions being far more common from the community than from institutions: 73% from the community and 28% from institutions did not die where last interviewed (p < 0.001). However, severely cognitively impaired people living in the community were the most likely group of all to move: 80% (68%−93%). Hospitals were the most common place of death except for the most cognitively impaired, who mostly died in care homes. Conclusion: Most very old community-dwelling individuals, especially the severely cognitively impaired, died away from home. Findings also suggest that long-term care may play a role in avoidance of end-of-life hospital admissions. These results provide important information for planning end-of-life services for older people across the cognitive spectrum, with implications for policies aimed at supporting home deaths. KeywordsCognitive impairment, dementia, aged, 80 and over, aged, frail elderly, patient transfer, residential characteristics, homes for the aged, nursing homes, delivery of health care, terminal care 221What is already known about the topic?• More people will be dying in very old age and dying with dementia or cognitive impairment.• Half the very old move in the last year of life and die away from their usual residence, but it is poorly understood how cognitive impairment affects these transitions. What this article adds?• Prospective population-based research with very old people, including cognitive assessments, reveals patterns in individual trajectories through care settings that routine data cannot explore.• Although 39% of ≥85-year-olds with severe cognitive impairment live in the community in their last year of life, only 8% die there, compared with 20% home deaths among cognitively unimpaired ≥85-year-olds.• The proportions of very old people dying in hospitals or in care homes decrease and increase, respectively, with worsening cognitive impairment. Implications for practice, theory or policy• Community end-of-life care provision needs to in...

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“…100 Another barrier is that clinicians, whose responsibility it is to break bad news, continue to find doing so difficult and thus avoid it, or fail to reach a consensus about whose role it is to do so. 114,148 People's interpretation or absorption of bad news when they are given it is not straightforward. There is often a discrepancy between the information that the professional perceived was given and the message received by the patient.…”

Section: Introductionmentioning

confidence: 99%

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Gott

Ingleton

Gardiner

et al. 2013

Health Services and Delivery Research

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BackgroundImproving the provision of palliative and end-of-life care is a priority for the NHS. Ensuring an appropriately managed ‘transition’ to a palliative approach for care when patients are likely to be entering the last year of life is central to current policy. Acute hospitals represent a significant site of palliative care delivery and specific guidance has been published regarding the management of palliative care transitions within this setting.Aims(1) to explore how transitions to a palliative care approach are managed and experienced in acute hospitals and to identify best practice from the perspective of clinicians and service users; (2) to examine the extent of potentially avoidable hospital admissions amongst hospital inpatients with palliative care needs.DesignA mixed-methods design was adopted in two hospitals in England, serving diverse patient populations. Methods included (1) two systematic reviews; (2) focus groups and interviews with 58 health-care professionals to explore barriers to, and facilitators of, palliative care transitions in hospital; (3) a hospital inpatient survey examining palliative care needs and aspects of management including a self-/proxy-completed questionnaire, a survey of medical and nursing staff and a case note review; (4) in-depth interviews with 15 patients with palliative care needs; (5) a retrospective case note review of all inpatients present in the hospital at the time of the survey who had died within the subsequent 12 months; and (6) focus groups with 83 key decision-makers to explore the implications of the findings for service delivery and policy.ResultsOf the 514 patients in the inpatient survey sample, just over one-third (n = 185, 36.0%) met one or more of the Gold Standards Framework (GSF) prognostic indicator criteria for palliative care needs. The most common GSF prognostic indicator was frailty, with almost one-third of patients (27%) meeting this criteria. Agreement between medical and nursing staff and the GSF with respect to identifying patients with palliative care needs was poor. In focus groups, health professionals reported difficulties in recognising that a patient had entered the last 12 months of life. In-depth interviews with patients found that many of those interviewed were unaware of their prognosis and showed little insight into what they could expect from the trajectory of their disease. The retrospective case note review found that 35 (7.2%) admissions were potentially avoidable. The potential annual cost saving across both hospitals of preventing these admissions was approximately £5.3M. However, a 2- or 3-day reduction in length of stay for these admissions would result in an annual cost saving of £21.6M or £32.4M respectively.ConclusionsPatients with palliative care needs represent a significant proportion of the hospital inpatient population. There is a significant gap between NHS policy regarding palliative and end-of-life care management in acute hospitals in England and current practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Having the difficult conversations about the end of life

Abstract: Clinicians need to create repeated opportunities for patients to talk about their future and end of life care, guided by the patient as to timing, pace, and content of such talks, and respecting the wishes of those who do not want to discuss such matters

Cited by 55 publications

References 29 publications

Missed Opportunities for Advance Care Planning Communication During Outpatient Clinic Visits

Missed Opportunities for Advance Care Planning Communication During Outpatient Clinic Visits

Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

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