Analysis of the role of home care for patients in palliative care: an integrative review of the period 2019-2023
DOI:
https://doi.org/10.55892/jrg.v7i15.1337Keywords:
Palliative care, Home nursing, Primary health care, Quaternary prevention, PreventionAbstract
Introduction: Palliative care (PC) in Brazil is insufficient when one takes into account the continental size of Brazil, the ageing population and technological advances in the field of medicine. There is an indisputable need to expand PC services in Brazil to cover all candidates, and the expansion of PC in home care is an alternative. The aim of this research is to analyze the role of home care in palliative care for terminally ill patients and its impact. Methodology: This study is an integrative literature review, based on the guiding question “What are the impacts of palliative care in home care for patients?”. The papers were screened using the SCIELO, PubMed and BVS electronic databases, including publications between 2019 and 2023. The criteria for including papers in the search were those in Portuguese or English that addressed at least one of the study's specific objectives. Results: The search initially resulted in 711 articles, which were filtered according to the inclusion and exclusion criteria and critical analysis, and 14 studies were included in the review. The articles addressed the beneficial perception of participants and the preference of caregivers for home PC, the higher incidence of death at home in the model, the positive influence on the mental health of patients and families, with a lower prevalence of anxiety and depression, the strong will to live among patients and the reduction in total health costs with the application of the model. Conclusion: Home PC is a viable care alternative, impacting several benefits for patients, such as a reduction in persistent or intense death wish, strong average will to live, psychological influence of faith, spirituality, support and family support and the feeling of safety and protection in the regularity of care.
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ACADEMIA NACIONAL DE CUIDADOS PALIATIVOS (ANCP). Atlas dos cuidados paliativos no Brasil 2019. São Paulo, 2020. Disponível em: https://paliativo.org.br/wp-content/uploads/2020/05/ATLAS_2019_final_compressed.pdf. Acesso em: 18 out. 2022.
ACADEMIA NACIONAL DE CUIDADOS PALIATIVOS (ANCP). Análise Situacional e Recomendações para Estruturação de Programas e Cuidados Paliativos no Brasil. São Paulo, 2018. Disponível em: https://paliativo.org.br/wp-content/uploads/2018/12/ANALISE-SITUACIONAL_ANCP-18122018.pdf. Acesso em: 09 set. 2022.
ALENEZI, A. et al. Quality of life among ostomy patients: A narrative literature review. Journal of Clinical Nursing, v. 30, n. 21-22, p. 3111–3123, 12 maio 2021.
ALI, M. et al. The importance of identifying preferred place of death. BMJ supportive & palliative care, v. 9, n. 1, p. 84–91, 25 set. 2015.
ALVES, R. S. F. et al. Cuidados Paliativos: Alternativa para o Cuidado Essencial no Fim da Vida. Psicologia: Ciência e Profissão, v. 39, p. 1-15, 2019.
ALZAHRANI, N. S. The effect of hospitalization on patients’ emotional and psychological well-being among adult patients: An integrative review. Applied Nursing Research, v. 61, p. 151488–151488, 1 out. 2021.
ARNOLD, E.; FINUCANE, A.; OXENHAM, D. Preferred place of death for patients referred to a specialist palliative care service: Table 1. BMJ supportive & palliative care, v. 5, n. 3, p. 294–296, sep. 2015.
ATTY, A. T. DE M.; TOMAZELLI, J. G. Cuidados paliativos na atenção domiciliar para pacientes oncológicos no Brasil. Saúde em Debate, v. 42, n. 116, p. 225–236, jan. 2018.
BALASUNDRAM, S. et al. Increasing the chance of dying at home: roles, tasks and approaches of general practitioners enabling palliative care: a systematic review of qualitative literature. BMC primary care, v. 24, n. 1, 2023.
BIFULCO, V.; LEVITES, M. A Importância do cuidador no acompanhamento de doentes crônicos portadores de Alzheimer. Archivos en Artículo Especial, v. 20, n. 4, p. 167–171, 2018.
BORGES, M. et al. Custo direto de internações hospitalares por doenças crônicas não transmissíveis sensíveis à atenção primária em idosos. Ciência & Saúde Coletiva, v. 28, n. 1, p. 231–242, 1 jan. 2023.
BRANT, J. M. et al. Global Survey of the Roles, Satisfaction, and Barriers of Home Health Care Nurses on the Provision of Palliative Care. Journal of Palliative Medicine, v. 22, n. 8, p. 945–960, 1 ago. 2019.
BRASIL. MINISTÉRIO DA SAÚDE. Comissão Intergestores Tripartite. Resolução nº 41, de 31 de outubro de 2018. Dispõe sobre as diretrizes para a organização dos cuidados paliativos, à luz dos cuidados continuados integrados, no âmbito Sistema Único de Saúde (SUS). Diário Oficial [da] República Federativa do brasil, Brasília, DF, 2018. Disponível em: https://pesquisa.in.gov.br/imprensa/jsp/visualiza/index.jsp?data=23/11/2018&jornal=515&pagina=276. Acesso em: 16 out. 2022.
BRASIL. MINISTÉRIO DA SAÚDE. Secretaria de Atenção à Saúde. Núcleo Técnico da Política Nacional de Humanização. HumanizaSUS: Documento base para gestores e trabalhadores do SUS. 4 ed. Brasília: Editora do Ministério da Saúde, 2010. 72 p. ISBN 978-85-334-1444-0.
BRASIL. Portaria n° 1.208, de 18 de junho de 2013. Dispõe sobre a integração do Programa Melhor em Casa (Atenção Domiciliar no âmbito do SUS) com o Programa SOS Emergências, ambos inseridos na Rede de Atenção às Urgências. Diário Oficial [da] República Federativa do Brasil, Brasília, DF, r. Disponível em: https://bvsms.saude.gov.br/bvs/saudelegis/gm/2013/prt1208_18_06_2013.html. Acesso em: 13 out. 2022.
BRITO, F. M. et al. Cuidados paliativos e comunicação: estudo com profissionais de saúde do serviço de atenção domiciliar Palliative care and communication: study with health professionals of the home care service. Revista de Pesquisa Cuidado é Fundamental Online, v. 9, n. 1, p. 215–221, 10 jan. 2017.
CARVALHO, G. A. F. DE L. et al. Significados atribuídos por profissionais de saúde aos cuidados paliativos no contexto da atenção primária. Texto & Contexto - Enfermagem, v. 27, n. 2, 2018.
CHAIMOWICZ, Flávio. Saúde do Idoso. NESCON/UFMG - Curso de Especialização em Atenção Básica em Saúde da Família. 2.ed. Belo Horizonte: Nescon/UFMG, 2013. 179p.
CLARK, D. et al. Mapping Levels of Palliative Care Development in 198 Countries: The Situation in 2017. Journal of Pain and Symptom Management, v. 59, n. 4, p. 794-807.e4, abr. 2020.
COOK, A. C.; STEIN, D. M.; PANTILAT, S. Z. Surgery and Palliative Care: A Shared History and Integrated Future. The Joint Commission Journal on Quality and Patient Safety, v. 46, n. 9, p. 491–492, set. 2020.
CROSS, S. H. et al. Trends and Factors Associated with Place of Death for Individuals with Dementia in the United States. Journal of the American Geriatrics Society, v. 68, n. 2, p. 250–255, fev. 2020.
ENGESER, P. et al. Identifying Palliative Patients in General Practice: Focusing on the Place of Death and the Vital Role of Specialized Home Palliative Care: An Observational Study. Journal of Palliative Medicine, v. 23, n. 12, p. 1626-1630, 23 dez. 2020.
FLIERMAN, I. et al. Effectiveness of transmural team-based palliative care in prevention of hospitalizations in patients at the end of life: A systematic review and meta-analysis. Palliative medicine, v. 37, n. 1, p. 75–87, 2023.
FRANCO, C. M.; LIMA, J. G.; GIOVANELLA, L. Primary healthcare in rural areas: access, organization, and health workforce in an integrative literature review. Cadernos de Saúde Pública, v. 37, p. e00310520, 7 jul. 2021.
GOMES, B. et al. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliative Care, v. 12, n. 7, 15 fev. 2013. Disponível em: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/1472-684X-12-7#citeas. Acesso em: 31 ago. 2022.
GOMES, B. et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Annals of Oncology, v. 23, n. 8, p. 2006–2015, 1 ago. 2012.
GONZÁLEZ-GONZÁLEZ, A. I. et al. End-of-Life Care Preferences of Older Patients with Multimorbidity: A Mixed Methods Systematic Review. Journal of Clinical Medicine, v. 10, n. 1, p. 91, 29 dez. 2020.
GONZALEZ-JARAMILLO, V. et al. Impact of home-based palliative care on health care costs and hospital use: A systematic review. Palliative and Supportive Care, v. 19, n. 4, p. 474–487, 9 dez. 2020.
HOLDER, Tim. Why Palliative Care is More Than Just Care for the Dying. Journal of Clinical Pathways, 2018. Disponível em: https://www.hmpgloballearningnetwork.com/site/jcp/blog/why-palliative-care-more-just-care-dying. Acesso em: 25 nov. 2022.
INSTITUTO BRASILEIRO DE GEOGRAFIA E ESTATÍSTICA (IBGE). Coordenação de Pesquisas por Amostra de Domicílios. Características gerais dos moradores 2020-2021: IBGE, Coordenação de Pesquisas por Amostra de Domicílios. Rio de Janeiro: IBGE, 2022. 115 p. ISBN 9788524045394. Disponível em: https://biblioteca.ibge.gov.br/visualizacao/livros/liv101957_informativo.pdf. Acesso em: 09 ago. 2022.
JOHNSTON, E. E. et al. Hospital or Home? Where Should Children Die and How Do We Make That a Reality? Journal of Pain and Symptom Management, v. 60, n. 1, p. 106–115, jul. 2020.
JULIÃO, M. et al. The desire for death in Portuguese home-care palliative patients: Retrospective analysis of the prevalence and associated factors. Palliative & Supportive Care, v. 19, n. 4, p. 457–463, ago. 2021.
KOPER, I. et al. The association between PaTz and improved palliative care in the primary care setting: a cross-sectional survey. BMC Family Practice, v. 20, n. 1, 3 ago. 2019. Disponível em: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6679548/?report=reader. Acesso em: 29 set. 2023.
MARTINS, P. L.; AZEVEDO, C. S.; AFONSO, S. B. C. O papel da família nos planos de tratamento e no cuidado pediátrico hospitalar em condições crônicas complexas de saúde. Saúde e Sociedade, v. 27, n. 4, p. 1218–1229, 1 out. 2018.
MOONEY, K. et al. Technology-assisted mHealth caregiver support to manage cancer patient symptoms: A randomized controlled trial. Journal of pain and symptom management, v. 66, n. 1, p. 33–43, 2023.
OLIVEIRA, P. E.; ISIDORO, G. M.; SILVA, S. A. Cuidados à pessoa com câncer de mama metastático na atenção básica: relato de caso. J. nurs. health, v. 11, n. 3, p. 2111219232–2111219232, 2021.
OLIVEIRA, S. G.; KRUSE, M. H. L. Better off at home: safety device. Texto & Contexto - Enfermagem, v. 26, n. 1, 2017. Disponível em: https://doi.org/10.1590/0104-07072017002660015. Acesso em: 16 out. 2022.
OUVERNEY, A. P. A. A trajetória de consolidação dos cuidados paliativos no Brasil. Orientador: Lenaura de Vasconcelos Costa Lobato. 2022. 200 p. Tese (Doutorado em Política Social) - Universidade Federal Fluminense, Niterói, 2022. DOI dx.doi.org/10.22409/PPGESS.2022.d.08689988777. Disponível em: https://app.uff.br/riuff/handle/1/26296. Acesso em: 7 dez. 2023.
PAGE, M. J. et al. The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. British Medical Journal, v. 372, n. 71, 29 mar. 2021. Disponível em: www.bmj.com/content/bmj/372/bmj.n71.full.pdf. Acesso em: 05 dez. 2023.
PRIZER, L. et al. The presence of a caregiver is associated with patient outcomes in patients with Parkinson’s disease and atypical parkinsonisms. Parkinsonism & Related Disorders, v. 78, p. 61–65, 1 set. 2020.
PEREIRA, Adriana S. et al. Metodologia da pesquisa científica. [S. l.]: Brasil, 2018. Disponível em: http://repositorio.ufsm.br/handle/1/15824. Acesso em: 01 set. 2022.
RADBRUCH, Lukas et al. Redefining Palliative Care: A New Consensus-Based Definition. Journal of Pain and Symptom Management, [S. l.], v. 60, n. 4, p. 754-764, 4 out. 2020. DOI https://doi.org/10.1016/j.jpainsymman.2020.04.027. Disponível em: https://www.jpsmjournal.com/action/showPdf?pii=S0885-3924%2820%2930247-5. Acesso em: 09 set. 2022.
RECKREY, J. M. et al. Home-Based Primary Care as a Teaching Site for Palliative Care. Journal of Palliative Medicine, v. 23, n. 1, p. 7–7, 1 jan. 2020.
RIBEIRO, D. L.; DE CARVALHO FILHO, M. A. Cuidados paliativos na emergência: invocando Kairós e repensando os sistemas de saúde. Cadernos de Saúde Pública, v. 38, n. 9, p. e00127922, 2022.
RIBEIRO, U.; VICENTE, L.; LEMOS, S. Letramento funcional em saúde em adultos e idosos com disfagia. Audiology - Communication Research, v. 26, 1 jan. 2021. Disponível em: www.scielo.br/j/acr/a/PbJGMYRH9w5vB746FQkzQtg/?format=pdf&lang=pt. Acesso em: 05 dez. 2023.
RODRIGUES, L. F. Modalidades de atuação e modelos de assistência em Cuidados Paliativos. Manual de Cuidados Paliativos ANCP. Ampliado e atualizado. 2 ed. P. 86-93. Rio de Janeiro, 2012.
ROTH, A. R.; CANEDO, A. R. Introduction to Hospice and Palliative Care. Primary Care: Clinics in Office Practice, v. 46, n. 3, p. 287–302, set. 2019.
SANTOS, André Felipe Junqueira dos et al. Atlas dos Cuidados Paliativos no Brasil 2019. 1. ed. São Paulo: ANCP, 2020. 55 p. ISBN 978-65-990595-0-6.
SANTOS, Q. N.; PORTO, L. A.; BATISTA, C. B. Significados de morte e morrer para profissionais de unidade de terapia intensiva. Psicol. argum, p. 316–337, 2020.
SANTOS, Vânia Nazaré Maia dos; SOEIRO, Ana Cristina Vidigal; MAUÉS, Cristiane Ribeiro. Qualidade de Vida de Pacientes Oncológicos em Cuidados Paliativos Domiciliares e Desafios da Prática Médica diante da Finitude da Vida. Revista Brasileira de Cancerologia, [s. l.], v. 66, n. 4, p. e–02423, 28 set. 2020. DOI https://doi.org/10.32635/2176-9745.RBC.2020v66n4.423. Disponível em: https://rbc.inca.gov.br/index.php/revista/article/view/423. Acesso em: 7 ago. 2023.
SCHAPIRA, M. et al. Geriatric co-management and interdisciplinary transitional care reduced hospital readmissions in frail older patients in Argentina: results from a randomized controlled trial. Aging Clinical and Experimental Research, v. 34, n. 1, p. 85–93, 7 jun. 2021.
SCHEERENS, C. et al. Earlier palliative home care is associated with patient-centred medical resource utilisation and lower costs in the last 30 days before death in COPD: a population-level decedent cohort study. European Respiratory Journal, v. 55, n. 5, p. 1901139–1901139, 27 fev. 2020.
SCHLICK, C. J. R.; BENTREM, D. J. Timing of palliative care: When to call for a palliative care consult. Journal of Surgical Oncology, v. 120, n. 1, p. 30–34, 18 maio 2019.
SEIDEL, D.; THYRIAN, J. R. Burden of caring for people with dementia – comparing family caregivers and professional caregivers. A descriptive study. Journal of Multidisciplinary Healthcare, v. 12, p. 655–663, ago. 2019.
SOUZA, L. K. DE; WEIS, A. H.; BLATT, C. R. Oxigenoterapia domiciliar: perfil dos usuários assistidos pelo programa melhor em casa. Revista Baiana de Enfermagem, v. 35, 2021. Disponível em: https://periodicos.ufba.br/index.php/enfermagem/article/view/45064. Acesso em: 16 out. 2022.
SPELTEN, E. et al. Rural palliative care to support dying at home can be realised; experiences of family members and nurses with a new model of care. Australian Journal of Rural Health, v. 27, n. 4, p. 336–343, 1 ago. 2019.
TALABANI, N. et al. Patients’ experiences of person-centred integrated heart failure care and palliative care at home: an interview study. BMJ supportive & palliative care, v. 10, n. 1, p. e9–e9, mar. 2020.
TISSOT, J. T.; VERGARA, L. G. L.; ELY, V. H. M. B. Definição de atributos ambientais essenciais para a humanização em quartos de internação. Ambiente Construído, v. 20, n. 3, p. 541–551, jul. 2020.
TWADDLE, M. L.; MCCORMICK, E. Palliative care delivery in the home. In: UpToDate, 2024. Disponível em: https://www.uptodate.com/contents/palliative-care-delivery-in-the-home?search=home%20based%20palliative%20care&source=search_result&selectedTitle=1%7E150&usage_type=default&display_rank=1. Acesso em: 20 de maio de 2024.
VALENTINO, C. et al. Where do Brazilian cancer patients prefer to die? Agreement between patients and caregivers. Journal of Pain and Symptom Management, v. 64, n. 2, p. 186–204, 1 ago. 2022.
VALERO-CANTERO, I. et al. Cancer patients’ satisfaction with in-home palliative care and its impact on disease symptoms. Healthcare (Basel, Switzerland), v. 11, n. 9, p. 1272, 2023.
VAN DER PLAS, A. G. et al. Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups. British Journal of General Practice, v. 68, n. 670, p. e351–e359, 26 mar. 2018.
VAN DOORNE, I. et al. Patients’ preferred place of death: patients are willing to consider their preferences, but someone has to ask them. Age and Ageing, v. 50, n. 6, p. 2004–2011, 28 ago. 2021.
WANG, S. E. et al. End-of-Life Care in Patients Exposed to Home-Based Palliative Care vs Hospice Only. Journal of the American Geriatrics Society, v. 67, n. 6, p. 1226–1233, 4 mar. 2019.
WORLD HEALTH ORGANIZATION. Cancer control: knowledge into action: WHO guide for effective programmes; module 5. Geneva: World Health Organization; 2007. Disponível em: http://apps.who.int/iris/bitstream/handle/10665/44024/9241547345_eng.pdf. Acesso em: 31 ago. 2022.
WU, Meng-Ping; HUANG, Sheng-Jean; TSAO, Lee-Ing. The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care. American Journal of Hospice and Palliative Medicine, v. 37, ed. 10, p. 816-822, 1 mar. 2020. DOI https://doi.org/10.1177/1049909120907601. Disponível em: https://journals.sagepub.com/doi/10.1177/1049909120907601?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed. Acesso em: 22 nov. 2022.
ZEILANI, R. et al. The experience of family support among patients newly diagnosed with cancer in Jordan. European Journal of Oncology Nursing, v. 60, p. 102173–102173, 1 out. 2022.