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Advisor(s)
Abstract(s)
Introdução: Telemedicina ou telessaúde são dois conceitos que definem a utilização de
tecnologias de telecomunicação na prestação de cuidados médicos especializados à
distância. No contexto dos cuidados paliativos são emergentes as novas oportunidades
de desenvolvimento proporcionadas pela aplicação destas tecnologias, sobretudo ao
nível da comunicação e suporte aos pacientes em fim de vida e suas famílias. Contudo,
existem implicações éticas associadas a este contexto específico de fim de vida, que
resulta dos potenciais riscos de negligência da privacidade e confidencialidade do
paciente e, também de problemas relacionados com a humanização/desumanização dos
cuidados.
Objetivo: Identificar os benefícios e implicações éticas da telemedicina aplicada aos
cuidados em fim de vida.
Métodos: A presente dissertação assume-se como uma revisão sistemática com síntese
narrativa. Todos os tipos de estudo foram incluídos, com exceção de literatura cinzenta.
As revisões sistemáticas foram selecionadas apenas com o objetivo de identificar artigos
relevantes e significativos para inclusão na revisão. A população de interesse: pacientes
adultos em fim de vida sob cuidados paliativos submetidos a tecnologias de telemedicina,
suas famílias, cuidadores informais e profissionais de saúde envolvidos no processo de
cuidados.
Resultados: Foram incluídos 22 estudos, dos 321 encontrados através da pesquisa
realizada. Os estudos qualitativos representam a maioria e, em geral, verificou-se uma
variação elevada no tamanho das amostras. Dos três tipos de contextos de aplicação da
telemedicina (cuidados paliativos hospitalares, hospice-base e domiciliários), os
cuidados domiciliares representam a aplicação mais comum das intervenções de
telemedicina, sendo a teleconsulta o principal método implementado e com maior
expressão no conjunto dos estudos.
Os principais benefícios identificados foram a melhoria da qualidade de vida, associada
a uma melhor gestão dos sintomas, incluindo dor e bem-estar psicológico. Além disso, a
melhoria do acesso a cuidados paliativos especializados com uma abordagem mais
centrada no paciente. Outro benefício identificado foi o papel mais ativo e o
empowerment impulsionado pelas intervenções de telemedicina. Implicações éticas também foram identificadas, estando principalmente associadas à
privacidade e confidencialidade dos dados do paciente. A um nível mais macro, foram
apontadas implicações éticas em relação à justiça e igualdade de acesso à tecnologia,
dispositivos e conhecimentos digitais, aumentando os problemas já existentes em
populações vulneráveis. Outro aspeto identificado diz respeito às responsabilidades
éticas, ao erro médico e às limitações da telemedicina que podem interferir no raciocínio
clínico e tomada de decisões.
Discussão/Conclusões: As intervenções de telemedicina foram identificadas como de
grande potencial para melhorar a qualidade dos cuidados de saúde. Alguns dos estudos
identificam questões relacionadas com a humanização dos cuidados. No entanto, tais são
abordadas de forma superficial e sem correlação direta com a satisfação e qualidade de
vida do paciente/cuidador. As maiores implicações éticas são referentes à privacidade e
segurança da tecnologia, reconhecidos por pacientes e profissionais de saúde.
Introduction: Telemedicine or telehealth are two concepts that define the use of telecommunication technologies in providing specialized medical services at a distance. The palliative care environment offers many new opportunities to improve communication and support patients and their families at the end of life. However, there are ethical concerns in the end-of-life context, mainly associated with the risks of neglecting patient privacy and confidentiality and issues related to the humanization /dehumanization of care. Aim: To identify the benefits and ethical implications of telemedicine applied to end-oflife care. Methods: This is a systematic review with narrative synthesis. All study designs were included, except grey literature. Systematic reviews were only selected for the purpose of identify relevant and significant articles for inclusion in the review. The population of interest: adult patients at the end of life in palliative care undergoing telemedicine interventions, the families, informal caregivers and health professionals involved in the care process. Results: We included 22 studies out of 321 found. Qualitative studies were in the majority, and, in general, there was a significant variation in sample sizes. From the three types of telemedicine application contexts (hospital-based, hospice-base and homebased palliative telemedicine) home care was the most common application of telemedicine interventions, and teleconsultation forms constituted the majority of interventions. The main benefits identified were the improvement in quality of life, associated with a better management of symptoms including pain and phycological well-being. It was also recognized the improvement of access to specialized palliative care, with a more centered approach. Another benefit recognized was the more active role and empowerment of patients and families, propelled by telemedicine interventions. Ethical issues and concerns were also identified, being mainly associated with privacy and confidentiality of patient’s data. At a macro level, ethical implications were recognized regarding justice and equality of access to technology and digital devices and knowledge, amplifying the already existing problems in more vulnerable populations. Other aspect was related to ethical responsibilities, medical error and the limitations of telemedicine that can interfere with clinical judgment and decisions. Discussion/Conclusions: Telemedicine interventions were identified with great potential to improve the quality of care. Some of the articles raise questions about the humanization of care. However, they are superficially addressed and do not correlate with patient/caregiver satisfaction and quality of life. The most considerable ethical implications is relate to the privacy and security risks of the technology, recognized by both patients and healthcare professionals.
Introduction: Telemedicine or telehealth are two concepts that define the use of telecommunication technologies in providing specialized medical services at a distance. The palliative care environment offers many new opportunities to improve communication and support patients and their families at the end of life. However, there are ethical concerns in the end-of-life context, mainly associated with the risks of neglecting patient privacy and confidentiality and issues related to the humanization /dehumanization of care. Aim: To identify the benefits and ethical implications of telemedicine applied to end-oflife care. Methods: This is a systematic review with narrative synthesis. All study designs were included, except grey literature. Systematic reviews were only selected for the purpose of identify relevant and significant articles for inclusion in the review. The population of interest: adult patients at the end of life in palliative care undergoing telemedicine interventions, the families, informal caregivers and health professionals involved in the care process. Results: We included 22 studies out of 321 found. Qualitative studies were in the majority, and, in general, there was a significant variation in sample sizes. From the three types of telemedicine application contexts (hospital-based, hospice-base and homebased palliative telemedicine) home care was the most common application of telemedicine interventions, and teleconsultation forms constituted the majority of interventions. The main benefits identified were the improvement in quality of life, associated with a better management of symptoms including pain and phycological well-being. It was also recognized the improvement of access to specialized palliative care, with a more centered approach. Another benefit recognized was the more active role and empowerment of patients and families, propelled by telemedicine interventions. Ethical issues and concerns were also identified, being mainly associated with privacy and confidentiality of patient’s data. At a macro level, ethical implications were recognized regarding justice and equality of access to technology and digital devices and knowledge, amplifying the already existing problems in more vulnerable populations. Other aspect was related to ethical responsibilities, medical error and the limitations of telemedicine that can interfere with clinical judgment and decisions. Discussion/Conclusions: Telemedicine interventions were identified with great potential to improve the quality of care. Some of the articles raise questions about the humanization of care. However, they are superficially addressed and do not correlate with patient/caregiver satisfaction and quality of life. The most considerable ethical implications is relate to the privacy and security risks of the technology, recognized by both patients and healthcare professionals.
Description
Keywords
Cuidados Paliativos Decisões Éticas Fim de Vida Humanização dos Cuidados Telemedicina