Palliative Care for People Living with Heart and Lung Disease

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About this Research Topic

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Background

Palliative care (PC) has undergone similar progress to other disciplines like cardiology or pulmonology in the last few decades, but this is only rarely perceived by other medical disciplines and communities. According to modern definitions, PC should be dedicated to all people affected by any disease, if its specific treatment cannot assure improvement of the underlying pathophysiology in a magnitude sufficient to alleviate symptoms and suffering. PC today is neither limited to a specific disease (like cancer) nor to a certain prognosis (like last weeks or months of life). It should be provided to all (both affected people and their relatives) who have disease related needs that cannot be optimally covered by the usual disease-oriented approach.

People living with heart disease, particularly with heart failure (HF) and chronic lung disease, particularly chronic obstructive lung disease (COPD) being the common end-pathway of many heart or lung diseases, circulatory or systemic disease, experience consequences of progressive loss of heart/lung function and subsequently of almost all organs and systems, as result of under-perfusion, congestion or underoxygenation. Deterioration of physical capacity and evolving symptoms (lack of energy, breathlessness) limit professional, social and familiar functioning, suppress quality of life and cause suffering affecting any dimension of a person’s life. The uncertain prognosis and acute deteriorations often related with risk of (sudden) death, bear the fear of losing independency, dying and the future of the family both before and after death (i.e. related to financial burden of living with disease and later to widowing). In young people affected by such disease, losing their role as mother or father is usually additional burden.

For all these reasons, people living with heart or lung disease can experience health related needs that can be covered by additional layer of care provided by PC, which addresses their physical, emotional, social, spiritual needs and problems. Support in coping with those needs helps to cope with the challenging disease and to live a life as full as possible, despite progressive diseases. Some dilemmas and burdens evolve early in the course of disease and not at the end-of-life. Effective relief of symptoms should be attributed to care during the whole period of living with the disease, and not only at the end-of-life. For this reason, PC should be accessible during the whole journey of living with a disease, always when the needs emerge, or even if risk of such needs/burdens can be recognized in advance.

PC can be provided as PC approach, when all health care professionals apply the principles of PC and in the case of more complex problems and needs as specialist PC, by health care professionals having appropriate training in providing PC. The general PC has evolved as a discipline, caring for people living with malignant oncologic disease. This is why the effectivity of PC interventions and their safety in people living with heart or lung disease are still not established and need careful revision of benefits and potential hazards.

The holistic nature and multidimensional care is an attribute of PC, independent of what is the cause. PC varies in peoples’ experiences, but the characteristics of affected people and the needs they require can substantially differ according to underlying disease. The provision of PC to people living with heart and lung disease, despite desired and effective in improving quality of life, is still marginal, however some positive trends can be noted in the last years.

The aim of this Research Topic is to discuss topics critical for improvement of PC provision for people living with the above mentioned disease:
1) Symptom burden (causes of or suffering) in people living with cardiovascular disease.
2) Symptom burden (causes of or suffering) in people living with progressive lung disease.
3) Palliative management of most common symptoms in people living with cardiovascular disease.
4) Palliative management of most common symptoms in people living with chronic lung disease.
5) Pathophysiology of breathlessness in people living with cardiovascular and lung disease.
6) Recognition of palliative care needs in people with cardiovascular disease.
7) Spiritual care in heart failure.
8) Modification of cardiovascular drugs in advanced heart failure (including deprescribing and diuretics at the end of life).
9) Palliative care for people living with congenital heart disease.
10) Advance practice or palliative nurse education in heart failure.
11) Needs of COPD patients on communication with doctors.
12) Does pulmonary rehabilitation improve spiritual care.
13) Physiotherapy in COPD at the end of life.
14) Opioids for breathlessness management in people with heart failure.
15) Integrated care for Heart failure, COPD and elderly patients.
16) Pomeranian project of care for COPD patients based on social workers.
17) Pharmacovigilance in context of palliative care for people with heart disease, pulmonary disease.
18) Palliative care program in acute hospital / cardiology department.

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