End-of-life planning in heart failure: It should be the end of the beginning

Abstract

Cardiovascular disease (CVD) is a chronic, progressive, incurable condition characterized by periods of apparent stability interspersed with acute exacerbations. Despite many important advances in its treatment, approximately one-third of deaths in Canada each year result from CVD. While this might lead one to assume that a comprehensive medical approach exists to the management of this inevitable outcome, the reality is much different. The current Canadian medical model emphasizes the management of acute exacerbations of CVD during which end-of-life issues figure frequently and prominently, although in a setting that is inappropriate to address the comprehensive needs of patients and their families. As a result, end-of-life care was made a theme of the recently reported Canadian Heart Health Strategy and Action Plan (www.chhs-scsc.ca). From this, several recommendations are made, central to which is the need to reframe CVD as a condition ideally suited to a chronic disease management approach. In addition, replacement of the term 'palliative care' with the term 'end-of-life planning and care' is proposed to foster earlier and more integrated comprehensive care, which, it is proposed, denotes the provision of advanced care planning, palliative care, hospice care and advanced directives, with a focus on decision making and planning. Finally, end-of-life planning and care should be a routine part of assessment of any patient with CVD, should be reassessed whenever important clinical changes occur and should be provided in a manner consistent with relevant CVD practice guidelines. Specifically, a Canadian strategy to improve end-of-life planning and care should focus on the following:• Integrated end-of-life planning and care across the health care system; • Facilitated communication and seamless care provision across all providers involved in end-of-life planning and care; • Adequate resources in the community for end-of-life planning and care; • Specialized training in sensitive communication and supportive care as part of core training for all members of the interdisciplinary care team; • Measurement of key performance indicators for end-of-life planning and care; and • Research into effective end-of-life planning and care. Heart failure is an advanced form of CVD with very high morbidity, mortality and burden of care, making it an ideal condition for implementation and testing of interventions to improve end-of-life planning and care. Les maladies cardiovasculaires (MCV) sont des maladies chroniques, évolutives et incurables caractérisées par des périodes de stabilité apparente entrecoupées d'exacerbations aiguës. Malgré les nombreux progrès importants du traitement, environ le tiers des décès au Canada découlent d'une MCV. On pourrait penser qu'il existe une approche médicale approfondie pour prendre en charge cette issue inévitable, mais la réalité est bien différente. Le modèle canadien actuel fait ressortir la prise en charge des exacerbations aiguës des MCV pour lesquelles les enjeux de fin de vie ont une ...

Should We Perform a Heart Failure Risk Score?

“…Several major societies, including the American Heart Association, the Canadian Cardiovascular Society, and the European Society of Cardiology, have all-published guidelines or position papers dealing with the patient with advanced heart failure and end-of-life care. [7][8][9] Several common themes are emphasized as follows: (1) individual prediction of outcomes in individual patients with heart failure is inherently imprecise. This necessitates a discussion of patient values and preferences to inform clinicians of patient wishes; (2) these discussions are best accomplished relatively early in the course of the disease, rather than during a crisis event, with the discussion including those closest to the patient, such as family or significant other; (3) advanced directives may prove useful in many instances, not the least of which is the identification of a substitute decisionmaker in event of incapacitation.…”

“…Evaluation and consideration of different cultural values should be developed. 8 And above all, care providers must become facile in the art of shared decision-making with patients and their families. In this way, we allow the best possibility that patients will be empowered, involved, and treated in the manner and place of their choosing when they need it the most.…”

Necesidad De Prácticas Cuidantes Culturalmente Congruentes: Personas Con Enfermedad Cardiovascular Al Final De La Vida

“…Existen pocos estudios acerca de los elementos que constituyen los cuidados para la persona con enfermedad cardiovascular en la etapa final; los existentes se han enfocado desde la fisiopatología, en función de comprender las respuestas metabólicas y cambios estructurales, en los cuales las enfermeras se han interesado por el diseño y aplicación de escalas para medir la calidad de la atención o la adherencia al tratamiento de los pacientes con enfermedad cardiovascular (15)(16)(17). También algunos estudios hablan de las experiencias de vida de las personas enfermas: sentimientos, significados, percepciones; la investigación hallada respecto al final de la vida del paciente con enfermedad cardiovascular precisa relación con los conceptos de cuidado paliativo no oncológico, al paciente en fase terminal o al final de la vida y atención tanatológica (18,(21)(22)(23)(24). Por otro lado es importante resaltar que en México se ha avanzado de manera significativa en la investigación de cuidados al final de la vida para la persona con enfermedad cardiovascular; lo exponen bajo el concepto de tanatología, que sugiere facilitar desde el inicio del proceso a paciente-familia el acompañamiento para la elaboración del duelo y posterior a la muerte; se documentan programas de atención en sesiones terapéuticas donde paciente-familia se expresan con relación a su experiencia de enfermedad en fase terminal, y se señala en la literatura que estos programas favorecen el proceso de duelo y previenen problemas bioéticos (conspiración del silencio, representación de la comedia o tratamiento médico fútil), claudicación del cuidador primario o duelos complicados, además de favorecer la muerte digna (25,26).…”

Psychiatric aspects of chronic palliative care: Waiting for death

“…That wider type of care implies an interdisciplinary organization (Nelson et al, 2010) aiming at a personal, steady, and continuous followup. Whereas palliative care will likely be introduced earlier in the trajectories of declining patients with chronic key organ failure, active total care (Murray et al, 2005b) remains mainly focused on symptom relief (Seamark et al, 2007), quality of life (Isaac & Curtis, 2009), end-of-life planning (Howlett et al, 2010) and self-management education (Rocker et al, 2007). These aspects of comprehensive care are all important features.…”