Older patients’ attitudes towards and experiences of patient-physician end-of-life communication: a secondary analysis of interviews from British, Dutch and Belgian patients

Abstract

BackgroundOlder patients often experience sub-standard communication in the palliative phase of illness. Due to the importance of good communication in patient-centred end-of-life care, it is essential to understand the factors which influence older patients’ communication with physicians. This study examines older patients’ attitudes towards, and experiences of, patient-physician end-of-life (EoL) communication in three European countries.MethodsA secondary analysis of interviews from British, Dutch and Belgian patients over the age of 60 with a progressive terminal illness was conducted. Cross-cutting themes were identified using a thematic approach.ResultsThemes from 30 interviews (Male n = 20, Median age 78.5) included: confidence and trust; disclosure and awareness; and participation in decision-making. Confidence and trust were reinforced by physicians’ availability, time and genuine attention and hindered by misdiagnoses and poor communication style. Most participants preferred full disclosure, though some remained deliberately ill-informed to avoid distress. Patients expressed a variety of preferences for and experiences of involvement in medical EoL decision-making and a few complained that information was only provided about the physician's preferred treatment.ConclusionsA variety of experiences and attitudes regarding disclosure and participation in decision-making were reported from each country, suggesting that communication preferences are highly individual. It is important that physicians are sensitive to this diversity and avoid stereotyping. In regard to communication style, physicians are advised to provide clear explanations, avoid jargon, and continually check understanding. Both the ‘informed’ and the ‘shared’ patient-physician decision-making models assume patients make rational choices based on a clear understanding of treatment options. This idealized situation was often not reflected in patients’ experiences.

Understanding psycho-social processes underpinning engagement with services in motor neurone disease: A qualitative study

“…[26][27][28][29] Rodriguez and Young 24 also found that service users questioned the benefit of lifesustaining interventions in situations where they perceived their quality of life as unacceptable. As in MND, people with advanced cancer prefer to be in control over treatment decisions and end-of-life care.…”

“…Empathy and genuine concern from healthcare professionals can engender trust in the service user, but a lack of sensitivity on behalf of service providers can diminish service users' trust in service providers. 27 Our findings shed light on MND service users' perceptions of life-sustaining treatments and of palliative care. We found that participants were resigned to death because of the terminal nature of MND, and they were averse to the notion of prolonging life in MND for the sake of longevity alone.…”

End of life care for frail older patients in family practice (ELFOP) – protocol of a longitudinal qualitative study on needs, appropriateness and utilisation of services

“…Internationally and nationally, there is a recent intensive debate on health care needs in older age, as well as emerging efforts to facilitate primary palliative care to alleviate the end of life of patients with non-malignant life limiting illness or advanced frailty [5,17,32,40,41]. In this study, the health care related needs and experiences of frail elderly patients as well as their informal caregivers and family physicians will be analysed.…”

“…Several, repeated interviews within an 18 months period may be a barrier for some patients. However, published experiences [32,40,41] demonstrate that patients can, and indeed appreciate to talk about personal and sensitive issues such as increasing functional decline, death, dying, and bereavement in repeated interviews over a longer period of time. We expect a 30% drop out due to withdrawal or non-ability to be interviewed any more, and 30% due to death.…”

Open communication strategies between a triad of ‘experts’ facilitates death in usual place of residence: A realist evaluation

“…Despite this, the literature indicates that quality shared decision-making occurs only about 10% of the time, 6,15 adoption in practice has been slow 9 and there is a lack of evidence about how to successfully implement shared decision-making. 16 Shared decision-making is essential in palliative care in order to elicit preferences about care, including place of care; however, recent research indicates mixed implementation, [17][18][19] which may be due to particular difficulty of using shared decision-making in integrated care sites such as palliative care, where decisions need to be negotiated between, and shared with, multiple health and social care practitioners, employed carers, patients and their family carers. 20 It is important that patient preferences are discussed in advance of end-of-life care, before lack of capacity sets in, to avoid unwanted, futile, aggressive and costly medical treatment, avoid the cessation of treatment when continuation is preferred and to ensure that preferred place of care or death is clear to all.…”