ReviewEnd-of-Life Decisions and Palliative Care in Advanced Heart Failure
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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Cited by (44)
Criteria for Referral of Patients With Advanced Heart Failure for Specialized Palliative Care
2022, Journal of the American College of CardiologyElements of Integrated Palliative Care in Chronic Heart Failure Across the Care Continuum: A Scoping Review
2022, Heart Lung and CirculationCitation Excerpt :A multidisciplinary, collaborative team based approach is an element of integrated palliative care in CHF [26,33,34,40,43,46,71,72] and each individual within the team should understand their role [66]. It is recommended the team consist of primary care, advanced CHF clinicians, palliative care specialists, geriatricians, nurses, social workers, chaplains, pharmacists and allied health, through team meetings and collaboration, partnering health care professionals with patients and carers [14,17,19,21,23,32,36,39,40,42,48,50,51,53,60,62,63,65,71, 3-80]. In order to integrate palliative care, a cardiologist should be the care champion to ensure buy-in from other cardiologists [81], and can identify and manage comorbidities and patient needs in collaboration with palliative care and not a siloed approach [42,74,81].
The Cost-Effectiveness of Palliative Care: Insights from the PAL-HF Trial
2021, Journal of Cardiac FailureCitation Excerpt :However, critical gaps remain in identification of patients likely to benefit from palliative services and implementation strategies. Patients with advanced heart failure have a high need for palliative care, yet they are less likely to receive palliative services relative to patients with cancer, in part owing to the uncertainty in prognostication.30 Different models have been tested to extend the reach of palliative care, including a cardiologist-led,31 palliative care–trained social worker,32 and affiliate health providers under with physician supervision.33
A systematic review of psychosocial design considerations for the next generation of mechanical circulatory support
2021, Heart and LungCitation Excerpt :This care should span pre-surgical assessment – which is inherently subjective and difficult to standardise42 – through to long-term counselling follow-up.48 At present, psychotherapeutic or more informal emotional support is dependent on the makeup of a particular team – and on the therapeutic capabilities of individual team members.64 If new solutions can be developed to meet this need in the future, on a consistent basis regardless of location or patient resources, they may offer an effective way to reduce the burden on patient-caregiver dyads.
Consensus of experts from the French Society of Geriatrics and Gerontology on the management of heart failure in very old subjects
2021, Archives of Cardiovascular Diseases
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