The Canadian Cardiovascular Society, American College of Cardiology and American Heart Association recommend that heart failure patients engage in ACP early in their illness [13,14,17]. Effective ACP is associated with improved quality of life and satisfaction with care, lower rates of depression and anxiety amongst bereaved family members and lower healthcare costs . ACP is the process a person uses to reflect on their values and beliefs to establish wishes that guide decision-making in the future, particularly at EOL [19▪,20]. There are three main elements  identification of the substitute decision maker (SDM)  reflecting on values, wishes and beliefs as they relate to health care and  preparing SDMs for future decision-making by discussing these values and wishes. Once established, the wishes inform future consent or refusal of treatment. The purpose of this process is to support patient autonomy and involvement in decision-making by requiring all care decisions to be based on the expressed wishes or best interest of the patient, regardless of whether the decision is made by a capable patient or the SDM of an incapable patient. Traditionally, ACP has been thought of as determining the medical interventions and life-sustaining treatments that are preferred at EOL. There is now evidence that this method is largely ineffective as it is impossible to know the future context in which these decisions will be made . The value-based model of ACP represents a new paradigm in heart failure EOL care. By engaging with this process, the patient and their SDM acquire the information and develop the skills needed to participate in the complex medical decisions that may be needed as their medical condition worsens. This approach is more likely to ensure that the care an individual receives is concordant with their values, goals and wishes. At present, there is no evidence to determine if the value-based model of ACP is effective. Future research is needed to determine if this approach actually increases ACP completion rates for patients living with heart failure.
Patients who continue to deteriorate despite the interventions of the heart-failure-team-based palliative care provider may benefit from hospice care. Hospice care is specialized palliative care that uses a multidisciplinary team approach to provide patients and families with comprehensive EOL care. Care can be provided either at home or within a residential hospice. Historically, this was the type of care many cardiologists understood as palliative care [12▪]. The results of the palliative care in heart failure (PAL-HF) trial suggest specialist heart failure palliative care is an effective method to support heart failure patients at EOL [30▪▪]. PAL-HF randomized 150 patients, from one site, to usual care (n = 75) or heart failure palliative care intervention (n = 75). The palliative care intervention consisted of interdisciplinary, guideline-driven heart failure palliative care to manage symptoms, psychosocial and spiritual needs and quality of life for patients with advanced heart failure. Patients were eligible for enrollment if they were at high risk for rehospitalization or death based on their Evaluation Study of Congestive Heart Failure and Pulmonary Artery Catheterization Effectiveness score . Consistent with a palliative approach to heart failure EOL care, the primary outcomes were quality of life scores; KCCQ and the Functional Assessment of Chronic Illness Therapy – Palliative Care scale (FACIT-PAL); FACIT spiritual and well-being scores and Hospital Anxiety and Depression (HADs) scores. Patients were followed for 6 months. There were no differences in baseline characteristics between the two groups. The average age of the sample was 71 years, 47% were women and 45% had a diagnosis of heart failure with preserved ejection fraction (HFpEF). The average duration of heart failure was 67 months. At 6 months, patients in the intervention arm showed significant improvement in the KCCQ and FACIT-PAL scores, HADs scores and spiritual well-being scores. There was no difference in hospitalization rates (30%) or mortality (29%). Importantly, the sample included almost 50% women and patients with HFpEF, often under-represented groups in heart failure trials, which improves the generalizability of results to clinical care.
Papers of particular interest, published within the annual period of review, have been highlighted as:
1. Ko DT, Alter DA, Austin PC, et al. Life expectancy after an index hospitalization for patients with heart failure
: a population-based study. Am Heart J 2008; 155:324–331.
2. Jessup M, Abraham WT, Casey DE, et al. 2009 focused update: ACCF/AHA guidelines for the diagnosis and management of heart failure
in adults: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines: developed in collaboration with the International Society for Heart and Lung Transplantation. Circulation 2009; 119:1977–2016.
3. Costanzo MR, Mills RM, Wynne J. Characteristics of ‘Stage D’ heart failure
: insights from the acute decompensated heart failure
national registry longitudinal module (ADHERE LM). Am Heart J 2008; 155:339–347.
4. Unroe KT, Grenier MA, Hernandez AF, et al. Resource use in the last 6 months of life among Medicare beneficiaries with heart failure
, 2000–2007. Arch Int Med 2011; 171:196.
5. Kaul P, McAlister FA, Ezekowitz J, et al. Resource use in the last 6 months of life among patients with heart failure
in Canada. Arch Int Med 2011; 171:211–217.
6. Fried TR, van Doorn C, O’Leary JR, et al. Older persons’ preferences for site of terminal care. Ann Intern med 1999; 131:109–112.
7. Formiga F, Ortega CC, Casas S, et al. End-of-life preferences in elderly patients admitted for heart failure
. Qual J Med 2004; 97:803–808.
9. Kavalieratos D, Mitchell EM, Carey TS, et al. Not the ‘grim reaper service’: an assessment of provider knowledge, attitudes, and perceptions regarding palliative care
referral barriers in heart failure
. J Am Heart Assoc 2014; 3:e000544.
10. Hauptman PJ, Swindle J, Hussain Z, et al. Physician attitudes toward end-stage heart failure
: a national survey. Am J Med 2008; 121:127–135.
11. Dunlay SM, Foxen JL, Cole T, et al. A survey of clinician attitudes and self-reported practices regarding end-of-life care in heart failure
. Palliat Med 2015; 29:260–267.
12▪. McIlvennan CK, Allen LA. Palliative care
in patients with heart failure
. BMJ 2016; 353:i1010.
An excellent review article on heart failure palliative care that includes a discussion of the barriers and opportunities for integration of palliative care onto the heart failure team.
13. McKelvie RS, Moe GW, Cheung A, et al. The 2011 Canadian Cardiovascular Society Heart Failure
Management Guidelines update: focus on sleep apnea, renal dysfunction, mechanical circulatory support, and palliative care
. Can J Cardiol 2011; 27:319–338.
14. Yancy CW, Jessup M, Bozkurt B, et al. 2013 ACCF/AHA guideline for the management of heart failure
: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. J Am Coll Cardiol 2013; 62:e239.
15. Jaarsma T, Beattie JM, Ryder M, 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; 11:433–443.
16▪. Kavalieratos D, Gelfman LP, Tycon LE, et al. Palliative care
in heart failure
. J Am Coll Cardiol 2017; 70:1919–1930.
An excellent review of heart failure palliative care that includes a discussion of symptom management and inpatient support.
17. Howlett J, Morrin L, Fortin M, et al. End-of-life planning in heart failure
: it should be the end of the beginning. Can J Cardiol 2010; 26:135–141.
18. Dixon J, Matosevic T, Knapp M. The economic evidence for advance care planning
: systematic review of evidence. Palliat Med 2015; 29:869–884.
19▪. Sudore RL, Lum HD, You JJ, et al. Defining advance care planning
for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage 2017; 53:821–832.
Description and outcomes of a Delphi technique to develop a consensus definition for advance care planning. The definition can be used to guide clinical, research and policy initiatives.
20. Sinuff T, Dodek P, You JJ, et al. Improving end-of-life communication and decision making: the development of a conceptual framework and quality indicators. J Pain Symptom Manage 2015; 49:1070–1080.
21. Sudore RL, Fried TR. Redefining the ‘Planning’ in advance care planning
: preparing for end-of-life decision making. Ann Intern Med 2010; 153:256–261.
22. Allen LA, Stevenson LW, Grady KL, et al. Decision making in advanced heart failure
: a scientific statement from the American Heart Association. Circulation 2012; 125:1928–1952.
23. Timmons MJ, MacIver J, Alba AC, et al. Using heart failure
instruments to determine when to refer heart failure
patients to palliative care
. J Palliat Care 2013; 29:217.
24▪. MacIver J, Wentlandt K, Ross HJ. Measuring quality of life in advanced heart failure
. Curr Opin Support Palliat Care 2017; 11:12–16.
An article that discusses routine measurement of symptom severity and quality of life in Stage D heart failure.
25. Ezekowitz JA, Thai V, Hodnefield TS, et al. The correlation of standard heart failure
assessment and palliative care
questionnaires in a multidisciplinary heart failure
clinic. J Pain Symptom Manage 2011; 42:379–387.
26. Opasich C, Gualco A, De Feo S, et al. Physical and emotional symptom burden of patients with end-stage heart failure
: what to measure, how and why. J Cardiovasc Med 2008; 9:1104–1108.
27. Spertus J, Peterson E, Conard MW, et al. Monitoring clinical changes in patients with heart failure
: a comparison of methods. Am Heart J 2005; 150:707–715.
28. Sidebottom AC, Jorgenson A, Richards H, et al. Inpatient palliative care
for patients with acute heart failure
: outcomes from a randomized trial. J Palliat Med 2015; 18:134–142.
29. Evangelista LS, Lombardo D, Malik S, et al. Examining the effects of an outpatient palliative care
consultation on symptom burden, depression, and quality of life in patients with symptomatic heart failure
. J Card Fail 2012; 18:894–899.
30▪▪. Rogers JG, Patel CB, Mentz RJ, et al. Palliative care
in heart failure
: the PAL-HF randomized, controlled clinical trial. J Am Coll Cardiol 2017; 70:331–341.
A randomized clinical trial that provides evidence that an integrated approach to heart failure palliative care improves the quality of life for patients at heart failure end of life.
31. O’Connor CM, Hasselblad V, Mehta RH, et al. Triage after hospitalization with advanced heart failure
: The ESCAPE (Evaluation Study of Congestive Heart Failure
and Pulmonary Artery Catheterization Effectiveness) risk model and discharge score. J Am Coll Cardiol 2010; 55:872–878.
32. Hauptman PJ, Mikolajczak P, George A, et al. Chronic inotropic therapy in end-stage heart failure
. Am Heart J 2006; 152:1096.e1–1096e.8.
33. Hershberger RE, Nauman D, Walker TL, et al. Care processes and clinical outcomes of continuous outpatient support with inotropes (COSI) in patients with refractory endstage heart failure
. J Card Fail 2003; 9:180–187.
34. Gorodeski EZ, Chu EC, Reese JR, et al. Prognosis on chronic dobutamine or milrinone infusions for stage D heart failure
. Circ Heart Fail 2009; 2:320–324.
35. Hashim T, Sanam K, Revilla-Martinez M, et al. Clinical characteristics and outcomes of intravenous inotropic therapy in advanced heart failure
. Circ Heart Fail 2015; 8:880–886.