Chronic heart failure is a progressive disease with serious symptoms, which reduce patient functionality and increasingly interfere with basic daily activities. Therefore, palliative care should be incorporated relatively early in the management of the disease as supportive treatment. With its progression, the role of palliation becomes more and more important. Principles of palliative care in heart patients cannot be simply transferred from the oncology. The prognosis in patients with chronic heart failure is less reliable than in oncology. Furthermore, in cardiac patients, active treatment of the heart failure is preserved or even intensified in the advanced stage of the disease, because it can control the severity of the symptoms.
Nevertheless, when ICU treatment in the terminal stage is recognized and confirmed as futile, the duty of intensivist is to provide care so that the patient can die with preserved dignity and without any additional harm.
Key words: palliative care, heart failure
Despite progress in its management, which is focused mainly to prolong life and improve the cardiac function, chronic heart failure remains a progressive disease with high mortality and serious symptoms that compromise the patient’s life and interfere with daily activities. The clinical course of chronic heart failure is usually related with a gradual decline in patient performance with episodes of acute worsening due to various reasons. (1, 2) Patients with heart failure have symptoms of basic disease such as fatigue and dyspnoea, but also pain, nausea, depression and anxiety, which result in serious psychosomatic distress. (3)
Palliative care is a holistic, multidisciplinary management, which aims to alleviate the symptoms and to improve the physical, psychological and social quality of the life of patients in the terminal stage of their disease.
The rationale and goal of palliative care for chronic heart failure
Palliative care should be an integral part of the management of chronic heart failure, which is initiated relatively early in the course of the disease as a supportive treatment. On the other hand, in the late and especially in the end stage of the disease with worsening of symptoms, palliative care should play an even more important role in the treatment strategy. The gradual increase of palliative care during progression of heart failure includes information of the patients about their disease and prognosis, goals of treatment, and the plan of end-of-life care. (4)
The most important goals of palliative care, which in principle should not shorten the dying process or prolong life are: relief of symptoms, integration of psychosocial and spiritual support, active life of the patient as long as possible, enhance the quality of life and to support the relatives. (5)
The goals of the treatment of progressive heart failure largely depend on the stage of the disease:
- chronic disease management phase (stage 1 – NYHA (New York Heart Association) class I – III): patients should be monitored actively and receive effective therapy to prolong life and to control symptoms. Additionally, patients should be properly educated about their disease and its prognosis:
- supportive and palliative care phase (stage 2 – NYHA class III-IV): the main goal is shifted to optimal symptom control and quality of life and the key professional should be appointed to coordinate care between cardiologists, palliative care providers and other services;
- terminal care phase (stage 3 – NYHA class IV): symptomatic treatment is most important, since the symptoms usually persists despite maximal treatment of heart failure. Resuscitation status should be clarified and communicated to all care givers. (6)
Prognosis of patients with chronic heart failure
Prognosis of the mortality risk in patients with heart failure is not reliable and is highly variable in individual patients. The features of almost 40,000 patients in studies with existing risk models for patients with heart failure were statistically analysed. The final model includes 13 significantly independent predictors of mortality: age, low ejection fraction, NYHA class, serum creatinine, diabetes, not prescribed beta-blockers, lower systolic pressure, lower body mass, time since diagnosis, chronic obstructive lung disease, male gender and not prescribed ACEI (angiotensin converting enzyme inhibitors) or angiotensin-receptor blockers. (7) Nevertheless, the risk scores (Seattle Heart Failure Model – SHFM; Meta-Analysis Global Group in Chronic Heart Failure – MAGGIC) are not reliable for a prediction of one-year mortality in individual patients and have very low sensitivity for one-year death. (8)
The traditional models for palliative care were developed for the cancer patients in whom prognosis of the disease is much clearer than for heart failure patients. Therefore, when the active treatment (for example chemotherapy) in cancer patients is exhausted, death usually appears in six months and active curative treatment can be switched to palliative management. On the other hand, in heart failure patients most of the active treatment is continued, since they have an important impact to the quality of life, despite the fact that they cannot prolong the survival.
Use of palliative care in chronic heart failure
Heart failure patients with following symptoms should be considered for palliative care referral: NYHA class III/IV symptoms, frequent hospital readmissions, recurrent ICD shocks, refractory angina, patients with multiple comorbidities, oxygen dependent chronic lung disease, dementia, metastatic cancer, progressive frailty, severe anxiety and depression and also patients who are considered candidates for mechanical support, transplantation, TAVR and home inotropic therapy. (9, 10)
Despite the facts that heart failure patients are increasingly included in palliative programs, most of them are provided only in hospitals. They are often targeted at specific patients who are considering special treatment options (mechanical circulatory support, transplantation or transcatheter aortic valve replacement (TAVR).
On the other hand, in the outpatient setting the need for palliative care for heart failure patients is largely unmet.
The evidence of palliative care impact in patients with chronic heart failure is limited and mixed:
- a multicentre randomized study in patients with chronic critical illness did not show reduction of anxiety and depression symptoms of family members after providing family meetings and information brochures; (11)
- the study in 524 dying patients showed improved outcome of care if patients received palliative consultations. (12)
Palliative care requires a multidisciplinary approach including primary care, cardiology and palliative care specialists, and there is evidence that such a team approach can improve survival in heart failure patients. (13) On the other hand, the low referral of heart failure patients to the palliative care facilities (despite its widespread availability) was found in a recent study in the United Kingdom. (14)
After realizing that the active treatment in the ICU is futile (organ function is resistant to treatment, goals of the treatment cannot be met, outcome is incongruent with patient values) and after discussing with the family members, it becomes necessary to ensure that the patient dies with preserved dignity. In the frame of end of life care, we can stop the dialysis, discontinue or wean the patient from vasopressors and inotrope, stop or wean the patient from mechanical ventilation and finally extubate the patient. (15) Every step should be carefully considered according to the individual situation in order to avoid additional harm.
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- 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.
- BlindermannCD, Homel P, Billings JA, Portenoy RK, Tennstedt SL. Symptom distress and quality of life in patients with advanced congestive heart failure. J Pain Symptom Manage 2008;35:594-603.
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- Pocock SM, Ariti CA, McMurray JJV, Maggioni A, Køber L, Squire IB, Swedberg K, Dobson J, Poppe KK,Whalley GA, Doughty RN, on behalf of the Meta-Analysis Global Group in Chronic Heart Failure (MAGGIC). Predicting survival in heart failure: a risk score based on 39 372 patients from 30 studies. European Heart Journal 2013; 34: 1404–1413.
- Allen LA, Matlock DD, Shetterly SM, et al. Use of Risk Models to Predict Death in the Next Year Among Individual Ambulatory Patients With Heart Failure. JAMA Cardiol 2017; 2:435-41.
- Lindvall C, Hultman TD, Jackson VA. Overcoming the barriers to palliative care referral for patients with advanced heart failure. J Am Heart Assoc 2014; 3:e000742.
- Teuteberg JJ, Teuteberg WG. Palliative care for patients with heart failure. Am Coll Card. Expert Analysis. Feb 11, 2016 http://www.acc.org/latest-in cardiology/articles/2016/02/11/08/02/palliative-care-for-patients-with-heart-failure. Last accessed: 22. 3. 2018
- Carson SS, Cox CE, Wallenstein S, et al. Effect of Palliative Care-Led Meetings for Families of Patients With Chronic Critical Illness: A Randomized Clinical Trial. JAMA 2016; 316:51-62.
- Casarett D, Pickard A, Bailey FA, et al. Do palliative consultations improve patient outcomes? J Am Geriatr Soc 2008; 56:593-9.
- Grady KL, Dracup K, Kennedy G, et al. Team management of patients with heart failure: A statement for healthcare professionals from The Cardiovascular Nursing Council of the American Heart Association. Circulation 2000; 102:2443-56.
- Cheang MH, Rose G, Cheung CC, Thomas M. Current challenges in palliative care provision for heart failure in the UK: a survey on the perspectives of palliative care professionals. Open Heart 2015; 2:e000188.
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