How are Treatment Decisions Made about Artificial Nutrition for Individuals at Risk of Lacking Capacity? A Systematic Literature Review

Abstract

BackgroundWorldwide, the number of individuals lacking the mental capacity to participate in decisions about their own healthcare is increasing. Due to the ageing global population and advancing medical treatments, there are now many more people living longer with neurological disorders, such as dementia, acquired brain injuries, and intellectual disabilities. Many of these individuals have feeding difficulties and may require artificial nutrition. However, little is known about the decision-making process; the evidence base is uncertain and often ethically complex. Using the exemplar of artificial nutrition, the objective of this review is to examine how treatment decisions are made when patients are at risk of lacking capacity.Methods and FindingsWe undertook a systematic review according to PRISMA guidelines to determine who was involved in decisions, and what factors were considered. We searched PubMed, AMED, CINAHL, EMBASE, PsychINFO, and OpenSigle for quantitative and qualitative studies (1990–2011). Citation, reference, hand searches and expert consultation were also undertaken. Data extraction and quality assessment were undertaken independently and in duplicate. We utilised Thomas and Harden’s ‘Thematic Synthesis’ for analysis. Sixty-six studies met inclusion criteria, comprising data from 40 countries and 34,649 patients, carers and clinicians. Six themes emerged: clinical indications were similar across countries but were insufficient alone for determining outcomes; quality of life was the main decision-making factor but its meaning varied; prolonging life was the second most cited factor; patient’s wishes were influential but not determinative; families had some influence but were infrequently involved in final recommendations; clinicians often felt conflicted about their roles.ConclusionsWhen individuals lack mental capacity, decisions must be made on their behalf. Dynamic interactive factors, such as protecting right to life, not unnecessarily prolonging suffering, and individual preferences, need to be addressed and balanced. These findings provide an outline to aid clinical practice and develop decision-making guidelines.

Relevancia del soporte nutricional especializado en las declaraciones de voluntades anticipadas. Experiencia de un centro hospitalario de especialidades

“…Sin embargo, estas fueron percibidas como influyentes, por los clínicos y los miembros de la familia y solo una minoría pensaba que los deseos de la familia deben prevalecer sobre las VA del paciente (19).…”

“…Cuando las personas carecen de la capacidad mental, se deben tomar decisiones en su nombre y deben ser abordados y equilibrados y es conveniente desarrollar pautas de toma de decisiones (19). Por su parte Kitzinger y col. (28) indica que las personas en estado vegetativo permanente y estado de mínima consciencia reciben tratamientos que prolongan la vida más allá de que sus familias creen que el paciente preferiría estar muerto.…”

“…Una revisión de 66 estudios de 40 países (19) sobre trastornos neurológicos que pueden requerir la NA concluye que la calidad de vida fue el principal factor de decisión, la prolongación de la vida fue el segundo factor más citado; los deseos del paciente eran influyentes pero no determinantes; las familias tenían alguna influencia pero con poca frecuencia fueron involucrados en las recomendaciones finales y que los médicos a menudo se sentían en conflicto acerca de sus roles. Paradójicamente, las decisiones éticas que más preocupan en cuidados críticos implican terapias de poca o ninguna utilidad.…”

Should an Elderly Patient with Stage V CKD and Dementia Be Started on Dialysis?

“…This is seen in the recent RPA guideline recommending that when the balance of benefits to burdens is uncertain, a trial of dialysis be offered (recommendation 7) (19). Clinicians often feel conflicted in their role as decision-makers, particularly because candidates for palliative renal care have varied comorbidity and functional profiles (26). Under these circumstances the use of a dialysis trial is an extension of biomedicalization (22) to nephrology.…”

Should they have a percutaneous endoscopic gastrostomy? The importance of assessing decision-making capacity and the central role of a multidisciplinary team

“…17 A recent systematic review of artifi cial nutrition for those at risk of lacking capacity found that the initial trigger for starting the decision-making process is a change in the person's clinical condition, such as choking. 18 However, this alone was insuffi cient for the complex decisions involved: when the individual lacked capacity, the overriding objective of the decision-makers was to improve the quality of life of the person lacking capacity. 18 …”