Physicians’ decreased tendency to choose palliative care for patients with advanced dementia between 1999 and 2015

Abstract

Background Physicians’ decision-making for seriously ill patients with advanced dementia is of high importance, especially as the prevalence of dementia is rising rapidly, and includes many challenging ethical, medical and juridical aspects. We assessed the change in this decision-making over 16 years (from 1999 to 2015) and several background factors influencing physicians’ decision. Methods A postal survey including a hypothetical patient-scenario representing a patient with an advanced dementia and a life-threatening gastrointestinal bleeding was sent to 1182 and 1258 Finnish physicians in 1999 and 2015, respectively. The target groups were general practitioners (GPs), surgeons, internists and oncologists. The respondents were asked to choose between several life-prolonging and palliative care approaches. The influence of physicians’ background factors and attitudes on their decision were assessed. Results The response rate was 56%. A palliative care approach was chosen by 57 and 50% of the physicians in 1999 and 2015, respectively (p = 0.01). This change was statistically significant among GPs (50 vs 40%, p = 0.018) and oncologists (77 vs 56%, p = 0.011). GPs chose a palliative care approach less often than other responders in both years (50 vs. 63% in 1999 and 40 vs. 56% in 2015, p < 0.001). In logistic regression analysis, responding in 2015 and being a GP remained explanatory factors for a lower tendency to choose palliative care. The impact of family’s benefit on the decision-making decreased, whereas the influence of the patient’s benefit and ethical values as well as the patient’s or physician’s legal protection increased from 1999 to 2015. Conclusions Physicians chose a palliative care approach for a patient with advanced dementia and life-threatening bleeding less often in 2015 than in 1999. Specialty, attitudes and other background factors influenced significantly physician decision-making. Education on the identification and palliative care of the patients with late-stage dementia are needed to make these decisions more consistent.

Do Perceptions about Palliative Care Affect Emergency Decisions of Health Personnel for Patients with Advanced Dementia?

“…Providers appear to be skeptical about PC for patients with chronic diseases other than cancer [ 41 ], and many lack the self-confidence to provide such care [ 42 ]. A Finnish study concluded that the low rate of implementation of PC could be associated with unrecognized palliative needs of patients with dementia [ 43 ].…”

“…Noteworthy, however, a Finnish study, assessing the tendency of physicians to choose PC for patients with AD, using a hypothetical case scenario, reported that PC was chosen less frequently in 2015 than in 1999. The authors suggest that increased reports of legal concerns among physicians in 2015 may partially explain this shift of preferences [ 43 ].…”

“…Perceptions of risk and ability to cope may play a role in the care of patients with AD [ 16 ]. Substantial legal concerns were found to be associated with more aggressive treatment choices [ 43 ]. Others found critical gaps and a lack of knowledge of relevant legal status among health personnel [ 57 ], promoting dis-concordant perceptions and performance.…”

What care do people with dementia receive at the end of life? Lessons from a retrospective clinical audit of deaths in hospital and other settings

“…The study, conducted in the United Kingdom in 2002/2003, found that people with dementia dying in hospital receive different end-of-life care to those without dementia and are less likely to be referred to palliative care, and to receive palliative medications [ 10 ]. A more recent study also found that Finnish physicians were less likely to choose a palliative care approach for a person with advanced dementia and life-threatening bleeding in 2015 than they were in 1999 [ 11 ]. Studies such as these, have indicated a need for urgent change to improve end-of-life and palliative care for people with dementia, both in Australia [ 12 , 13 ], and internationally [ 14 ].…”

Needs and expectations of family caregivers of cancer patients in palliative care: A study protocol

“…Healthcare professionals are responsible for decisions about how much care patients and family caregivers receive (Haapasalmi et al, 2021). Building knowledge about the cancer patient's family caregivers' needs and expectations is essential.…”