Elsevier

American Heart Journal

Volume 164, Issue 3, September 2012, Pages 313-319.e5
American Heart Journal

Curriculum in Cardiology
Preferences of people with advanced heart failure—a structured narrative literature review to inform decision making in the palliative care setting

https://doi.org/10.1016/j.ahj.2012.05.023Get rights and content

Background and Approach

There is a growing emphasis on the need for high-quality and patient-centered palliative care for patients with heart failure (HF) near end of life. Accordingly, clinicians require adequate knowledge of patient values and preferences, but this topic has been underreported in the HF literature. In response, we conducted a structured narrative review of available evidence regarding patient preferences for HF care near end of life, focusing on circumstances of death, advance care planning, and preferences for specific HF therapies.

Results

Patients had widely varying preferences for sudden (“unaware”) death versus a death that was anticipated (“aware”), which would allow time to make arrangements and time with family; preferences influenced their choice of HF therapies. Patients and physicians rarely discussed advance care planning; physicians were rarely aware of resuscitation preferences. Advance care planning discussions rarely included preferences for limiting implantable cardioverter defibrillator use, and patients were often uninformed of the option of implantable cardioverter defibrillator deactivation. A substantial minority of patients strongly preferred improved quality of life versus extended survival, but preferences of individuals could not be easily predicted.

Conclusions

Current evidence regarding preferences of patients with HF near end of life suggests substantial opportunities for improvement of end-of-life HF care. Most notably, the wide distribution of patient preferences highlights the need to tailor approach to patient wishes, avoiding assumptions of patient wishes. A research agenda and implications for health care provider training are proposed.

Section snippets

Methods

We used a systematic review approach to generate a structured narrative review to make sure that we did not overstate facts or miss important studies. However, given that the topic of patient preferences is broad and studies are heterogenous, traditional systematic review with or without meta-analysis was impractical. Thus, we will not focus on systematic review methods here and instead provide the reader with a online Appendix Supplemental Table of original HF research studies that were

Where and under what circumstances do patients prefer to die?

Forty-two percent of US adults die in hospitals (2008), and calls to improve terminal care include recommendations to expand the use of home and hospice.15 Several studies have queried patients regarding their preferred site of terminal care. Patients typically preferred home or hospital as site of preferred terminal care,16, 17, 18, 19 although, in 1 study, a quarter of patients preferred a nursing home.18 Patients cited their desires to be with family members, worries about burdening family

Conclusions

Although patients with HF and other terminal diseases may have similar illness experiences, our literature review found that patients with HF often have preferences for and have received more life-sustaining interventions than other seriously ill patients. Some of the available therapies for HF are unique (eg, ICDs and LVADs) and present their own challenges when discussing discontinuation. We identified several areas such as ICD deactivation and preferences regarding HF therapies for which

Acknowledgements

S.D. and C.O. had access to all of the data in the study and take responsibility for the integrity of the data and accuracy of the data analysis. This material is the result of work supported with resources and the use of facilities at the Phoenix VA Health Care System. The contents do not represent the views of the Department of Veterans Affairs or the United States Government.

References (54)

  • J. MacIver et al.

    Choices: a study of preferences for end-of-life treatments in patients with advanced heart failure

    J Heart Lung Transplant

    (2008)
  • R.S. Phillips et al.

    Choices of seriously ill patients about cardiopulmonary resuscitation: correlates and outcomes

    Am J Med

    (1996)
  • G.C. Fonarow et al.

    Potential impact of optimal implementation of evidence-based heart failure therapies on mortality

    Am Heart J

    (2011)
  • G.C. Stewart et al.

    Patient expectations from implantable defibrillators to prevent death in heart failure

    J Card Fail

    (2010)
  • R. Lampert et al.

    HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy: this document was developed in collaboration and endorsed by the American College of Cardiology (ACC), the American Geriatrics Society (AGS), the American Academy of Hospice and Palliative Medicine (AAHPM); the American Heart Association (AHA), the European Heart Rhythm Association (EHRA), and the Hospice and Palliative Nurses Association (HPNA)

    Heart Rhythm

    (2010)
  • S. Brush et al.

    End-of-life decision making and implementation in recipients of a destination left ventricular assist device

    J Heart Lung Transplant

    (2010)
  • K.M. Swetz et al.

    Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy

    Mayo Clin Proc

    (2011)
  • L.W. Stevenson et al.

    Changing preferences for survival after hospitalization with advanced heart failure

    J Am Coll Cardiol

    (2008)
  • E.F. Lewis et al.

    Preferences for quality of life or survival expressed by patients with heart failure

    J Heart Lung Transplant

    (2001)
  • M.R. Shah et al.

    Evaluation Study of Congestive Heart Failure and Pulmonary Artery Catheterization Effectiveness (ESCAPE): design and rationale

    Am Heart J

    (2001)
  • D.M. Lloyd-Jones et al.

    Lifetime risk for developing congestive heart failure: the Framingham Heart Study

    Circulation

    (2002)
  • T. Jaarsma et al.

    Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology

    Eur J Heart Fail

    (2009)
  • J. Levenson et al.

    The last six months of life for patients with congestive heart failure

    J Am Geriatr Soc

    (2000)
  • J.S. Kutner

    An 86-year-old woman with cardiac cachexia contemplating the end of her life: review of hospice care

    JAMA

    (2010)
  • L.A. Allen et al.

    Decision making in advanced heart failure: a scientific decision from the American Heart Association

    Circulation

    (2012)
  • Committee on Quality Health Care in America IoM

    Crossing the quality chasm: a new health system for the 21st century

  • CDC Wonder Online Database. Centers for Disease Control and Prevention. 2012. Available at:...
  • Cited by (44)

    • Heart failure mortality prediction using PRISM score and development of a classification and regression tree model to refer patients for palliative care consultation

      2020, IJC Heart and Vasculature
      Citation Excerpt :

      Considering this huge variability, it is important to provide a patient-centered approach to treatment that tailors to their lifestyle choices. A longitudinal study of 608 patients in the USA showed that only 41% had an advanced directive [12,13]. A randomized controlled study has shown that consultation with palliative care increased the chances of dying at home [14], as this allows patients an opportunity to spend more time with their families.

    • How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews

      2019, Journal of Pain and Symptom Management
      Citation Excerpt :

      Family carers often mediated between patients and health care professionals in a “decision making triad”.25 Where patients had spoken with someone about ACP, it was more likely to be with family or friends than health care professionals.44,45 Some reviews highlighted that ACP could be difficult if family carers were unwilling to engage.45,46

    • Palliative care in heart failure

      2018, Trends in Cardiovascular Medicine
      Citation Excerpt :

      While some patients may prioritize increased survival, others strongly prefer to optimize quality of life, even at the expense of prolonged survival. MacIver et al found an almost even split between these two groups; [51] and subsequent studies have shown that patient preferences vary widely and are difficult to predict [32]. Mode of death should also be discussed, as this can influence patients’ treatment decisions.

    • An Intervention to Enhance Goals-of-Care Communication Between Heart Failure Patients and Heart Failure Providers

      2016, Journal of Pain and Symptom Management
      Citation Excerpt :

      Although clinical practice guidelines recommend that cardiology providers engage in GoC conversations and refer patients to palliative care,7,8 there are no specific strategies to determine when GoC conversations should occur.9 Thus, HF patients and family caregivers report minimal communication with providers regarding expectations of illness trajectory, prognostic estimates, symptom management, implantable cardioverter-defibrillator deactivation, and advance care planning.10,11 Providers often fail to initiate such discussions with patients,12,13 and when they do, the prognostic estimates may not be well received by patients.14

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

      2016, Canadian Journal of Cardiology
      Citation Excerpt :

      The wish for an unaware death needs to be balanced in the setting of implantable cardioverter defibrillator (ICD) therapy. The possibility of receiving painful electrical shocks in the last phases of life is genuine and should prompt ongoing conversations about the optimal timing of deactivation of the shock function.79 Among patients with ICDs, there is low awareness of what deactivation involves; the topic is generally never discussed, and most patients are unaware that deactivation is an option.83

    View all citing articles on Scopus

    William S. Weintraub MD, served as guest editor for this article.

    View full text