Identifying Patients With Particular Needs: The Gold Standards Framework
Some particular patient needs are disease specific. One of the major barriers to the delivery of good-quality EOL care is the fact that people who are approaching the end of their lives are not identified at an early enough stage. Consequently, they and their families are not provided with the
support they need. This may lead to poor care provision, inappropriate hospital admissions, preventable suffering, or crisis events. This is a particular problem for patients with non-malignant diseases, frailty, and dementia, as the illness trajectories of such conditions are not as predictable as those of malignant disease.
The Gold Standards Framework (GSF) is a result of a grassroots initiative of primary care providers to improve palliative care in the United Kingdom (Gold Standards Framework, 2012). The GSF Prognostic Indicator Guide was developed by the GSF Central Team to assist generalist clinicians with early identification of people approaching the end stages of their disease process. The guidance provides useful prompts or “triggers” to health care professionals, making them aware that supportive measures for EOL care should be initiated promptly.
Triggers include multiple comorbidity, frailty, and excess mortality: Muscle weakness, bone fragility associated with falls and fractures, malnutrition, delirium, and frailty exacerbated by the risks of recurrent and possibly inappropriate admission to acute hospital services can accelerate death though a range of avoidable physical and psychological harms.
Expert clinicians, especially case managers (often advance practice nurses) and geriatricians, are aware of the inherent risks the older and or frail patient faces. Timely and accurate assessment as part of proactive management or ACP linked with objective critical decision making delivers a higher chance of securing the right outcomes. Individual tools and intervention might have limited impact. Health care decisions that are subject to direct or indirect bias of financial incentives might lead to skewed and unfavorable outcomes too, such as the exclusion of intensive care for an elder where there might have gained benefit because of age discrimination.
Universal Positive Change
U.K.-based systems of integration of health and care delivery systems give some hope for more universal positive change over and above either disease-specific and small-scale initiatives. The basic ingredients remain the same: keep the patient (and family) at the center of what we do and provide good clinical care, a multidisciplinary focus, anticipatory treatment and care decisions, coordination of services, and access to specialist advice and support for the patient and frontline staff.
Informed treatment and care decisions in anticipation of future predicted events can lead to the formulation of legally binding advance directives (ADs) (e.g., advance decisions to refuse treatments). Statutes enshrine the legal principles of autonomy and self-determination of people with mental capacity, even if the decisions they make may seem
unwise to others. Advance decision making is not new. The expected benefits of these decisions have had uncertain impact in the United States. In England, the statute is still markedly underutilized and enacted when judged against the expected need of the 1% per year dying. The overarching principles of ACP include ADs that compel health care workers to follow their legally binding decisions. ACP systems must include the structured approach to set patient priorities, including ADs and preferences of where and how to die if we are ever to achieve the IHI's Triple Aim of (a) improving the patient experience of care (including quality and satisfaction); (b) improving the health of populations; and (c) reducing the per capita cost of health care.