Elsevier

Canadian Journal of Cardiology

Volume 32, Issue 9, September 2016, Pages 1148-1156
Canadian Journal of Cardiology

Review
End-of-Life Decisions and Palliative Care in Advanced Heart Failure

https://doi.org/10.1016/j.cjca.2016.04.015Get rights and content

Abstract

Advanced heart failure (HF) therapies are focused on extending life and improving function. In contrast, palliative care is a holistic approach that focuses on symptom alleviation and patients' physical, psychosocial, and spiritual needs. HF clinicians can integrate palliative care strategies by incorporating several important components of planning and decision-making for HF patients. Future care planning (FCP) for HF patients should incorporate the basic tenets of shared decision-making (SDM). These include understanding the patient's perspective and care preferences, articulating what is medically feasible, and integrating these considerations into the overall care plan. Use of defined triggers for FCP can stimulate important patient-caregiver conversations. Guidelines advocate an annual review of HF status and future care preferences. Advance directives are important for any individual with a chronic, life-limiting illness and should be integrated into FCP. Nevertheless, use of advance directives by HF patients is extremely low. Consideration of illness trajectories and risk-scoring tools might facilitate prognostication and delivery of appropriate HF care. Decisions about heart transplantation or left ventricular assist device implantation should include planning for potential complications associated with these therapies. Such decisions also should include a discussion of palliative management, as an alternative to intervention and also as an option for managing symptoms or adverse events after intervention. Palliative care, including FCP and SDM, should be integrated into the course of all patients with advanced HF. Clinicians who provide HF care should acquire the skills necessary for conducting FCP and SDM discussions.

Résumé

Les traitements de l’insuffisance cardiaque (IC) à un stade avancé sont axés sur le prolongement de la vie et l’amélioration du fonctionnement. En revanche, les soins palliatifs constituent une approche holistique qui se concentre sur le soulagement des symptômes et les besoins physiques, psychosociaux et spirituels des patients. Les cliniciens spécialisés en IC peuvent intégrer les stratégies de soins palliatifs en incorporant plusieurs composantes importantes de la planification et de la prise de décision concernant les soins aux patients atteints d’IC. La planification des soins futurs (PSF) des patients atteints d’IC devrait inclure les principes de base de la prise de décision partagée (PDP). Ceux-ci comprennent la compréhension du point de vue du patient et de ses préférences en matière de soins, l’articulation de ce qui est réalisable et l’intégration de ces considérations au plan de soins global. L’utilisation des déclencheurs définis de la PSF peut susciter des discussions importantes entre le soignant et le patient. Les lignes directrices préconisent un bilan annuel de l’évolution de l’IC et des préférences futures en matière de soins. Des directives préalables sont importantes pour tous les individus atteints d’une maladie chronique limitant l’espérance de vie et devraient être intégrées à la PSF. Néanmoins, l’utilisation des directives préalables par les patients atteints d’IC est extrêmement faible. La prise en considération des trajectoires de maladie et des outils de score de risque pourrait faciliter le pronostic et la prestation appropriée des soins aux patients atteints d’IC. Les décisions de transplantation cardiaque ou d’implantation d’un dispositif d’assistance ventriculaire gauche devraient comprendre la planification des complications potentielles associées à ces traitements. De telles décisions devraient également comporter une discussion sur la prise en charge en soins palliatifs en tant que solution aux interventions et également en tant qu’option de prise en charge des symptômes ou des événements indésirables après l’intervention. Les soins palliatifs, y compris la PSF et la PDP, devraient faire partie du suivi de tous les patients atteints d'IC à un stade avancé. Les cliniciens qui offrent des soins spécialisés en IC devraient acquérir les compétences nécessaires pour mener les discussions sur la PSF et la PDP.

Section snippets

Ethical Underpinnings of the Palliative Approach: Enshrining Patient Autonomy and Facilitating Patient Self-Determination

In 1976, California became the first state in the United States to legally sanction advance directives (ADs). In 1990, the United States passed further laws mandating that patients be informed of their rights with respect to refusal and discontinuation of treatments and requiring that institutions ask patients for ADs and make those documents available.27 In Canada, beginning in 1990-1991, there was legal recognition of 2 types of ADs: the instructional AD and the proxy directive (medical power

Recognition as a Prelude for Action: Tools to Prompt Recognition

Although PC should ideally be integrated early in the course of HF care, recognition of HF worsening is a key to re-evaluation of treatment strategies and also an opportunity to initiate FCP and consider PC involvement. “Failure to recognize disease worsening” can result in failure to treat (ie, to make referrals for life-saving or life-prolonging procedures at appropriate points in the course of the illness). It is crucial that clinicians caring for HF patients recognize clinical signs

Frailty Scores

Frailty is increasingly conceptualized to be a biologic state that is associated with decreased physiologic reserve and decreased resistance to stressors resulting from a cumulative decline across multiple systems. This is especially important in elderly individuals, who make up a substantial proportion of the growing HF population. Frailty has been shown to increase vulnerability to stressors, and it is associated with worse outcomes in many forms of cardiovascular disease, including HF.58, 59

Triggers for PC Consultation

Specific and predetermined criteria, or “triggers,” are useful to ensure appropriate specialist involvement for patients at high risk for unmet PC needs.17, 64 The unmet needs can be exacerbated by the “culture” of intensive care unit medicine and cardiology, with their focus on “rescuing” rather than supporting the patient. Triggers have been developed for patients in intensive care settings, and some authors have suggested triggers for chronically ill ambulatory patients.65 Although automatic

Patient Perspectives

In advanced HF, patients' perception of their duration of survival differs significantly from SHFM prediction of survival; most patients overestimate their expected survival by 40%.68 Decision-making requires an accurate prognostic perspective; thus, conversations about the prognosis need to occur early in the HF trajectory and become a routine part of care. From the patient's perspective, the consequences of failing to appreciate limited survival time might include an inability to participate

What Do Patients Want? What Typically Happens?

Patients with HF generally receive maximal medical therapy until death, and those in hospital commonly undergo cardiopulmonary resuscitation.71 The prevalence of DNR orders for patients with HF is < 5%.72 The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) trial highlighted a significant discrepancy between current practice and patient preferences, as stated in a structured interview with physicians and family members73; 215 (23%) of 936 patients

What Do Patients Identify as Most Important to Them?

From a recent meta-analysis of what hospitalized patients identify as being most important to them with respect to end-of-life care, 4 top themes emerged: (1) effective communication and SDM; (2) expert care; (3) respectful and compassionate care; and (4) trust and confidence in clinicians. Financial affairs were important to families, and “not being a burden” was identified as a patient concern.77 Notably, families and patients ranked the need for honest communication as one of the most

Defining Priorities

Establishing what is important to patients can help guide decision-making. Excellent self-help tools for patients and families are available to direct meaningful conversations about end-of life preferences. These tools include the “Conversation Project”85 and “Voicing My Choices,”86 which use open questions and analogue scales to define where patients stand on a range of issues (eg, “what I want to know”: ranging from “I only want to know the basics” to “I want to know as much as I can.”).

Potential transplant candidates

Transplantation is an established therapy for end-stage HF, with 2600 heart transplants performed annually in the United States and Canada combined87; the most recent report from Canada, dated 2012, states that 129 patients received cardiac transplantations.88 Transplantation is not a simple “cure” for HF. Even a successful transplantation imposes new problems, including the risk of perioperative death, as well as tissue rejection, infection, renal insufficiency, and malignancy. Currently,

Conclusion: Changing the Culture by Moving Toward Full Integration of PC Services With Advanced HF Services

Integrating PC services with complex hospital processes and enshrined routines is a challenge. There is strong evidence of a clear benefit to HF patients if PC is involved at all points along the illness trajectory. These patients have a morbid and mortal disease with a high symptom load. They should be aware of the HF course, willing to accept the risks, and open to considering treatments that, although they offer hope, also impose burdens. As a profession, we should not ask HF patients to

Disclosures

The authors have no conflicts of interest to disclose.

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