Advance care planning (ACP) as a process of discussing and recording wishes for future care and treatment is increasingly being promoted and discussed in the UK, reflecting recent changes in legislation. This study describes current ACP practice in care homes for older people drawing on data from a questionnaire survey (n = 213) of, and interviews (n = 15) with, care home managers. Whilst consultation about general care is taking place in the majority of homes surveyed using both formal and informal processes, the number of residents that have completed any ACP processes varies. Managers face intrinsic and extrinsic challenges related to the ascertaining of, and the implementing of wishes as they address ACP in the care home context. Until these wider contextual factors are addressed it will be difficult for staff in care homes to effectively undertake and implement ACP in care homes.
Objectives: Examine the extent to which financial assistance, in the form of subsidies for life-extending treatments (LETs) or cash pay-outs, distorts the demand for end-of-life treatments. Methods: A discrete choice experiment was administered to 290 cancer patients in Singapore to elicit preferences for LETs and palliative care (PC) only. Responses were fitted to a latent class conditional logistic regression model. We also quantified patients' willingness to pay to avoid and willingness to accept a less effective LETor PC only. We then simulated the effects of various LET subsidy and cash pay-out policies on treatment choices. Results: We identified 3 classes of patients according to their preferences. The first class (26.1% of sample) has a strong preference for PC and are willing to give up life expectancy gains and even pay for receiving only PC. The second class (29.8% of sample) has a strong preference for LETs and prefers to extend life regardless of cost or quality of life. The final class (44.1% of sample) prefers LETs to PC, but actively trades off costs, length and quality of life when making end-of-life treatment choices. Policy simulations show that LETsubsidies increase demand for LETs at the expense of demand for PC, but an equivalent cash payout was not shown to distort demand. Conclusions: Cancer patients have heterogeneous end-of-life preferences. LET subsidies and cash payouts have differing effects on the utilization of LETs. Policymakers should be mindful of these differences when designing healthcare financing schemes for patients with life-limiting illnesses.
Background: Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people's expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients' wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. Methods: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients' knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper. Results: One hundred two participants provided an analyzable response to the survey when asked why they haven't talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It's not a priority; and 8. A lack of knowledge about ACP. Conclusions: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients' knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person-centred relationship they have with patients to mitigate some of these barriers.
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