O fim de vida em casa: do doente à família - revisão integrativa

Introduction: In Portugal, an epidemiological study of Death Places in 2010 and comparison with the preferences of the Portuguese population (1) shows that 50.3% of people prefer to die at home and that the preference to die at home decreases from the group 16-24 years (61.9%) for the group of 55-64 years (42.5%), but increases in people aged 75 years or more, and the group has the highest preference to die at home (66,2%). The care unit is composed of the patient and the family which should be considered together as interconnected realities. Many families take care of their sick or terminally ill in order to respect his last wishes but take care of a family at the end of life can become a burden with high emotional costs, physical, financial and psychological. (2) Aim: identify the needs and resources of patients in end-of- life, in palliative care, and the families who care for their patient at home Materials and Methods: Integrative literature in EBSCO databases, MEDLINE, PubMed and B-on with the descriptors "Palliative Care", "Patients", "Family; "End-of-life," Home ". The inclusion criteria were included all English-language articles; existing full-text; with resume and references available and analyzed by experts with the time frame between 2006 and 2016. Exclusion criteria, articles related to pediatrics were excluded for a total of 4 of the 51 items found. Results: The evidence shows that of the 47 analyzed articles found mostly review articles of literature, conferences, editorials and commentaries. The most discussed topics were: palliative home care, family support, home care, symptom control, needs of patients and their families / caregivers and promoting quality of life. Since most patients want to stay and die at home, monitoring the clinical status of patients for palliative care allows a plan advanced and individualized care through a holistic approach. Also allows empower the family to care for the fact that the families do not have knowledge to ensure continuity of care can become distressing and stressful, since assuming the role of caregiver is a significant factor in stress and psychological disturbance. (2) As to the identified needs we highlight the level of the patient's physical needs, referring to the control of symptoms (85%), with predominance of pain control (90%); psychological needs such as communication (58.3%); spiritual needs (50%) for the management of pain, loss of sense of life and (33%) for the management of fear of dying; social needs (33%) related to the resources available in the community and finally, family needs, for the preparation of the informal caregiver for your paper (58.5%). (3) With regard to resources, the literature review shows the identification, qualification and training of informal caregivers, preparation for self-care on discharge from the hospital, the therapeutic regimen management, promotion / transition in the continuity of care in the community, social support, information sharing between stakeholders (patient / family / teams), early referral of the patient. (4) Conclusion: The analysis emerged that given that patients with advanced or incurable disease manifest symptoms sometimes complex that influence the quality of life, changes in the physical, psychological, social, cultural and spiritual well-being, making it crucial to identify and assessment of patient needs, establish an advanced care plan with individualized and effective therapeutic strategies ensuring support to families in crisis situations and management of resources, to solve the problems identified.