مراقبت تسکینی مبتنی بر منزل: حلقه گم شده مراقبت از بیماران در ایران

The World Health Organization (WHO) has introduced palliative care as a way to improve the quality of life of patients with incurable diseases and their families. This care begins with the diagnosis of the disease, and continues throughout the illness (1). Palliative care improves the quality of life of patients with life-threatening diseases and their families. Its purpose is to relieve suffering through the identification, evaluation, and relief of pain and other physical, psychosocial and spiritual problems (2). Palliative care is required for many diseases. According to reports, every year about 40 million people in the world need palliative care, but only 14% of them receive it, of whom 78% live in low-income or middle-income countries. According to the World Health Organization, patients who require palliative care services, suffer from cardiovascular diseases (38.5%), cancer (34%), chronic pulmonary diseases (10.3%), AIDS (5.7%), and diabetes (4.6%). Other patients with diseases, such as dementia, kidney failure, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological diseases, congenital anomalies, and resistant tuberculosis may also need palliative care services (1). Palliative care can be offered to patients through various models, including hospital-based palliative care, hospice-based palliative care and home-based palliative care (3). Studies have shown that home-based palliative care has a very beneficial effect on the physical, mental, psychological, social and economic dimensions of patient’s life, and reduces the cost of health system, shortens the length of hospitalization, reduces hospital complications and prevents hospital readmission (4-6). This type of care also facilitates the continuity of post-discharge care and helps patient to easily benefit from the facilities of different centers (7). On the other hand, most people prefer to receive care at their homes with their families (8). Studies have shown that home-based palliative care is clinically and economically effective and leads to the satisfaction of patients and their families. Also, the World Health Organization in 2014 has introduced home-based palliative care as one of the main elements of the health systems all around the world (1). However, reports indicate that many countries in the world do not have palliative care programs in their health care system (7), and the lack of government support for palliative care services, lack of prepared professional staff to provide palliative services, limitation in access to narcotic analgesics, resource constraints, lack of policy-makers’ familiarity with palliative medicine, the negative attitude of society towards palliative care and socio-cultural issues have been mentioned as barriers to palliative care in the world (1, 9,10). Iran’s health system is faced with increasing number of chronic patients and shortages of manpower and ICU beds in health centers. Most patients with life-threatening diseases in Iran are frequently admitted to hospital during the last days of their lives. Despite the shortage of hospital beds, especially in the critical care units, these patients occupy these beds and receive specialized medications until the end of their lives and eventually many of these patients die on ICU beds in hospital (11). While in many cases, hospitalization of incurable patients in critical care units does not have any positive effects on patients’ recovery, and is considered a futile care (12), which increases the costs of health system, poses financial burden on patient’s family, and leads to dissatisfaction and work burnout in healthcare staff (13). On the other hand, many of these patients prefer to spend the last days of their lives at home with their family and be in close contact with their relatives. Evidence suggests that palliative care in Iran is only offered in isolated and limited centers. Most patients are deprived of this kind of care, and home-based palliative care does not have any place in Iran’s health system (14). Patients with incurable conditions who require palliative care services are lost in the system, and in most cases do not receive proper and timely services they need (15). Also, the traditional attitude of healthcare staff towards the management of incurable conditions, the lack of transparency in the protection of healthcare staff against discontinuation of unnecessary treatments or unreasonable expectations of patients and their families, as well as social and cultural differences are barriers to the promotion of palliative care in Iranian society. Another problem in providing home-based palliative care services is the defect in the payment process and insurance coverage of end-of-life patients (16,17). Therefore, given the high prevalence of chronic and incurable illnesses, the increasing number of elderly population, limited critical care beds, shortages of human resources, limited financial resources and equipment in health centers, and taking into account the benefits of home-based palliative care, healthcare system authorities should consider this care method to be one of the important priorities of the health system so that patients can maintain their quality of life and also experience peace during the last days of their lives. Considering the limited research in this field, further research is required on the management of various dimensions of home-based palliative care in order to provide suitable models for the provision of home-based palliative care services in Iran.