Reconceptualizing Advance Care Planning From the Patient's Perspective

Abstract

The traditional academic assumptions are not fully supported from the perspective of patients involved in ACP. The patients we interviewed stated that (1) the purpose of ACP is not only preparing for incapacity but also preparing for death; (2) ACP is not based solely on autonomy and the exercise of control, but also on personal relationships and relieving burdens placed on others; (3) the focus of ACP is not only on completing written advance directive forms but also on the social process; and (4) ACP does not occur solely within the context of the physician-patient relationship but also within relationships with close loved ones.

Advance Care Planning in Belgium and The Netherlands: A Nationwide Retrospective Study Via Sentinel Networks of General Practitioners

“…39 Remarkably, ACP is documented considerably more often in The Netherlands than in Belgium, even after controlling for country differences in patient or care characteristics. This country-specific effect might be rooted in a general difference in medical culture between the two countries, as physicians in The Netherlands tend more toward the formalization of practices.…”

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…It is consistently reported that, rather than promoting personal preferences and autonomy, a key motivator for ACP is patients' desire to relieve family members of the burden of care and responsibility for making difficult decisions. 65,76,81,82,133 ACP emerges largely as a professional construct framed as an intervention requiring professional mediation. Little is known about the extent or nature of discussions regarding end of life issues that may go on within families, though some studies report patients may look to relatives as well as, and possibly instead of, professionals for this purpose.…”

“…Little is known about the extent or nature of discussions regarding end of life issues that may go on within families, though some studies report patients may look to relatives as well as, and possibly instead of, professionals for this purpose. 43,75,133,134 The availability and willingness of relatives to provide care is critical to enabling death to occur at home. 69,135 Relatives clearly have an important role to play in decisions about ACP and in providing hands-on care for patients dying at home.…”

“…69,135 Relatives clearly have an important role to play in decisions about ACP and in providing hands-on care for patients dying at home. 133,136 However, carers' entitlement to information about prognosis and their role in decision-making and future planning is frequently unclear, and carers assess professional communication about EOLC as inadequate. 100 Evidence for effectiveness of advance care planning Despite the very considerable policy commitment to ACP in the UK as well as internationally, it remains uncommon in practice.…”

“…73 There is consistent evidence that the key priority for patients is control of pain, followed by not imposing a burden on family members. 5,65,69,74,76,78,81,82,107,125,133,181 Indeed, the desire to makes things easier for family members is stated to be one of the principal reasons for patients to engage in ACP.…”