Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives’ experiences? A two country survey

Abstract

ObjectivesAdvance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017–2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not.MethodsRelatives after cancer deaths in hospitals answered the CODE questionnaire 6–8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient’s remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models.Results276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18–80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support.ConclusionsRelatives who had been invited to a conversation about wishes for the patient’s remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient’s final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it.

Advance care planning in oncology: a scoping review and some recommendations

“…Fourteen articles that were not included in these categories are reported in Table 1. They address two topics: ACP uptake rates [39–44]; and ACP outcomes [45–52].…”

“…Thirty-eight studies [15–52] and three reviews were identified [6 ▪ ,8 ▪▪ ,13 ▪▪ ]. Studies were heterogeneous in terms of cancer care contexts, population size and characteristics, research designs, and assessment methods (Table 1).…”

Cancer patients' expectations of advance care planning: A typological content analysis of qualitative interviews

“…6 While many experimental studies have failed to demonstrate benefits in terms of relevant patient-reported outcome measures, 7 qualitative studies, research with relatives and personal anecdotes have suggested otherwise. 6,[8][9][10][11] This incongruence indicates that different basic assumptions of the person planning ahead could be an influencing factor. Over the years, it has been confirmed that expectations can impact outcomes of various medical interventions.…”

“…This is contrasted by an ongoing debate in the current literature that is highly critical of the actual value of ACP 6 . While many experimental studies have failed to demonstrate benefits in terms of relevant patient‐reported outcome measures, 7 qualitative studies, research with relatives and personal anecdotes have suggested otherwise 6,8–11 …”

Developing a care pathway for hospital‐based advance care planning for cancer patients: A modified Delphi study

“…In recent years, advance care planning (ACP) has been championed as a pillar of high‐quality, person‐centred care (Institute of Medicine, 2015; National Consensus Project for Quality Palliative Care, 2018) improving many patient‐ and carer‐relevant endpoints (Brinkman‐Stoppelenburg et al, 2014; Detering et al, 2010; Hjorth et al, 2021; Houben et al, 2014). It is a structured conversational process assisting ‘individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate’ (Rietjens et al, 2017).…”