How to achieve the desired outcomes of advance care planning in nursing homes: a theory of change.

BACKGROUND: Advance care planning (ACP) has been identified as particularly relevant for nursing home residents, but it remains unclear how or under what circumstances ACP works and can best be implemented in such settings. We aimed to develop a theory that outlines the hypothetical causal pathway of ACP in nursing homes, i.e. what changes are expected, by means of which processes and under what circumstances. METHODS: The Theory of Change approach is a participatory method of programme design and evaluation whose underlying intention is to improve understanding of how and why a programme works. It results in a Theory of Change map that visually represents how, why and under what circumstances ACP is expected to work in nursing home settings in Belgium. Using this approach, we integrated the results of two workshops with stakeholders (n = 27) with the results of a contextual analysis and a systematic literature review. RESULTS: We identified two long-term outcomes that ACP can achieve: to improve the correspondence between residents' wishes and the care/treatment they receive and to make sure residents and their family feel involved in planning their future care and are confident their care will be according to their wishes. Besides willingness on the part of nursing home management to implement ACP and act accordingly, other necessary preconditions are identified and put in chronological order. These preconditions serve as precursors to, or requirements for, accomplishing successful ACP. Nine original key intervention components with specific rationales are identified at several levels (resident/family, staff or nursing home) to target the preconditions: selection of a trainer, ensuring engagement by management, training ACP reference persons, in-service education for healthcare staff, information for staff, general practitioners, residents and their family, ACP conversations and documentation, regular reflection sessions, multidisciplinary meetings, and formal monitoring. ONCLUSIONS: The Theory of Change map presented here illustrates a theory of how ACP is expected to work in order to achieve its desired long-term outcomes while highlighting organisational factors that potentially facilitate the implementation and sustainability of ACP. We provide the first comprehensive rationale of how ACP is expected to work in nursing homes, something that has been called for repeatedly.

International study of the place of death of people with cancer: a population-level comparison of 14 countries across 4 continents using death certificate data.

BACKGROUND: Where people die can influence a number of indicators of the quality of dying. We aimed to describe the place of death of people with cancer and its associations with clinical, socio-demographic and healthcare supply characteristics in 14 countries. METHODS: Cross-sectional study using death certificate data for all deaths from cancer (ICD-10 codes C00-C97) in 2008 in Belgium, Canada, Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (2010), USA (2007) and Wales (N=1,355,910). Multivariable logistic regression analyses evaluated factors associated with home death within countries and differences across countries. RESULTS: Between 12% (South Korea) and 57% (Mexico) of cancer deaths occurred at home; between 26% (Netherlands, New Zealand) and 87% (South Korea) occurred in hospital. The large between-country differences in home or hospital deaths were partly explained by differences in availability of hospital- and long-term care beds and general practitioners. Haematologic rather than solid cancer (odds ratios (ORs) 1.29-3.17) and being married rather than divorced (ORs 1.17-2.54) were most consistently associated with home death across countries. CONCLUSIONS: A large country variation in the place of death can partly be explained by countries' healthcare resources. Country-specific choices regarding the organisation of end-of-life cancer care likely explain an additional part. These findings indicate the further challenge to evaluate how different specific policies can influence place of death patterns.