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A pessoa em fim de vida : vivências dos enfermeiros
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Resumo(s)
O enquadramento conceptual do trabalho centrou-se na pessoa em fim de vida. O texto
elaborado compreende duas partes. Na primeira parte, sob o título “A Pessoa em Fim de
Vida”, estão incluídos capítulos ligados às características psicológicas, sociológicas,
assistenciais e vivenciais das pessoas no final das suas vidas internadas no Hospital de
S. Bernardo, em Setúbal. Nesta primeira parte incluem-se considerações sobre as
características e o funcionamento do Hospital de S. Bernardo e a vivência da autora
como enfermeira naquele hospital sobretudo nos domínios a que se referem aos doentes
graves e em situações terminais.
A segunda parte do trabalho, sob a designação “Tentativa de avaliação dos
conhecimentos e atitudes dos enfermeiros perante a pessoa em fim de vida”, inclui um
estudo baseado nas respostas a um inquérito efectuado aos enfermeiros do Hospital de
S. Bernardo, centrado nas suas opiniões sobre a sua própria preparação, sobre as
questões éticas mais relevantes, os seus conhecimentos, as suas capacidades e o seu
desempenho nos domínios dos cuidados a prestar aos doentes graves e em fim de vida.
A amostra da população dos enfermeiros do Hospital de S. Bernardo que serviu de base
ao estudo foi de ocasião e envolveu cinquenta enfermeiros. Os critérios de selecção
foram estabelecidos de acordo com conceitos de ordem teórica, ética e operacional.
Foram os seguintes: a) ser enfermeiro de um serviço de Urgência, Medicina ou Cirurgia
do Hospital de S. Bernardo; b) concordar na participação do estudo; c) demonstrar
evidências de motivação para a participação no estudo.
O questionário proposto era composto por trinta e duas questões fechadas e uma aberta.
As primeiras quatro questões dirigiam-se aos domínios sociodemográficos e à
experiência profissional. As questões propostas subsequentemente diziam respeito aos
conhecimentos, à natureza dos cuidados prestados e às opiniões face à qualidade dos
cuidados à pessoa em fim de vida. Foram questões de resposta fechada, do tipo Lickert.
A última questão proposta foi uma pergunta aberta sobre as estratégias para melhorar o
apoio à pessoa /família/pessoa significativa que se encontra em fim de vida internada no
hospital. As respostas à última pergunta foram interpretadas segundo codificações e
agrupadas em categorias. As respostas foram recolhidas e analisadas tendo sido sujeitas
à apreciação de juízes exteriores e neutros, peritos na área da investigação qualitativa e
na área da pessoa em fim de vida. As conclusões do trabalho foram as seguintes:
a) Os conhecimentos sobre a pessoa em fim de vida foram referidos por 44,0% dos
enfermeiros como Insuficiente, 30,0% Bom, 22,0% Suficiente e 4,0% Excelente.
b)Os conhecimentos adquiridos durante a preparação académica sobre a pessoa em fim
de vida foram referidos como 38,0% Suficiente, 32,0% Insuficiente, 20,0% Bom e 10,0%
Muito Bom.
c) Os conhecimentos adquiridos em formação contínua pós-graduada foram referidos
como 44,0% Suficiente, 28,0% Insuficiente, 18,0% Bom e 10,0% Muito Bom.
d) Os conhecimentos adquiridos em actividades dirigidas à formação específica sobre a
pessoa em fim de vida foram referidos como 32,0% Insuficiente, 32,0% Suficiente,
20,0% Bom, 12,0% Muito Bom e 4,0% Excelente.
e) As condições de acolhimento no Hospital de S. Bernardo à pessoa em fim de vida
foram consideradas 50,0% Suficiente, 30,0% Insuficiente, 10,0% Bom e 10,0% Muito
Bom.
f) No que respeita aos cuidados prestados à pessoa em fim de vida, essenciais à sua
dignidade de pessoa, desde a analgesia, à alimentação possível, ao conforto e à presença
pessoal consideraram:
f1) - No Hospital de S. Bernardo, 60,0% dos inquiridos Bom, 32,0% Suficiente e
8,0% Muito Bom.
f2) - Na cidade de Setúbal, 84,0% Suficiente e 16,0% Insuficiente.
f3) - Nos hospitais em geral, 84,0% Suficiente e 16,0% Insuficiente.
f4) - No país 52,0% Suficiente e 48,0% Insuficiente.
g) – As respostas dos inquiridos sobre o melhor local para cuidar a pessoa em fim de
vida foram as seguintes:
g1) - Em unidades específicas com esta finalidade, 62,0% consideraram
Excelente, 32,0% Muito Bom e 6,0% Bom.
g2) - Em unidades especializadas nos hospitais, 58,0% Excelente, 36,0% Muito
Bom e 6,0% Bom.
g3) - Em enfermarias comuns nos hospitais, 50,0%, Insuficiente, 20,0% Muito
Bom 12,0% Excelente 10,0% Suficiente, 8,0% Bom.
g4) - No domicílio com apoio hospitalar, 48,0% Excelente, 44,0% Muito Bom e
8,0% Bom. g5) - Em unidades especializadas fora dos hospitais 48,0% Muito Bom, 40,0%
Excelente e 12,0% Bom.
g6) - Os cuidados prestados à pessoa em fim de vida com apoio especializado
extra-hospitalar 52,0% responderam Excelente, 40,0% Muito Bom e 8,0%
Bom.
h) - Os enfermeiros consideraram a presença de um familiar/pessoa significativa junto à
pessoa internada em fim de vida, 60,0% Excelente, 36,0% Muito Bom e 4,0% Bom.
i) - Os enfermeiros responderam sobre a tomada de decisão pelo doente da presença de
um familiar/pessoa significativa junto à pessoa internada em fim de vida, 62,0%
Excelente, 36,0% Muito Bom e 2,0% Bom.
j) - As respostas dos inquiridos sobre a tomada de decisão pelos profissionais de saúde
da presença de um familiar/pessoa significativa junto à pessoa internada em fim de vida
86,0% Muito Bom, 10,0% Bom e 4,o% Excelente.
l) - Os enfermeiros sobre a integração de um familiar/pessoa significativa na equipa que
cuida dos doentes em fim de vida consideraram 66,0% Muito Bom, 28,0% Excelente e
6,0% Bom.
m) - Sobre a participação da família/pessoa significativa no cuidar da pessoa internada
em fim de vida 50,0% consideraram Muito Bom, 34,0% Excelente e 16,0% Bom.
n) - As respostas dos inquiridos sobre a permissão da visita de um familiar/pessoa
significativa junto à pessoa internada em fim de vida fora do horário normalizado 52,0%
referiram como Muito Bom, 30,0% Excelente, 16,0% Bom e 2,0% Suficiente.
o) - As respostas dos inquiridos sobre a boa qualidade da informação ao doente sobre a
sua situação de fim de vida 38,0% Muito Bom, 28,0% Excelente, 28,0% Bom e 6,0%
Suficiente.
p) - As respostas à pergunta sobre a aceitação por parte dos profissionais de saúde de
acções destinadas a promover a dignidade do final de vida, 66,0% consideraram Muito
Bom, 20,0% Excelente e 14,0% Bom.
q) - As respostas à pergunta sobre o apoio à família/pessoa significativa durante o luto,
70,0% Muito Bom, 16,0% Bom e 14,0% Excelente.
r) – No que se refere ao apoio e suporte psicológico aos profissionais de saúde que
cuidam das pessoas internadas em fim de vida referiram, Muito Bom 52,0%, 38,0%
Excelente e 10,0% Bom. s) - No que se refere à existência de diálogo e reflexão sobre as situações de fim de vida
na equipa multidisciplinar consideraram, 46,0% Excelente, 42,0% Muito Bom e 12,0%
Bom.
t) – Sobre a existência de actividades que sensibilizem os profissionais de saúde sobre a
temática “A Pessoa em fim de vida” na instituição referiram, 72,0% Excelente, 20,0%
Muito Bom e 8,0% Bom.
u) - Sobre a existência de directivas na instituição e de protocolos referentes à assistência
ao doente/família/pessoa significativa durante o processo de morrer, consideraram,
72,0% Excelente, 18,0% Muito Bom, 8,0% Bom e 2,0% não responderam.
v) - As respostas que os enfermeiros formularam à pergunta aberta foram, elas próprias,
consideradas neste trabalho como propostas de intervenção no hospital.
The conceptual framing of the work was centred in the end-of-life human person. The text produced comprises two parts. In the first part, under the title “The end-of-life person”, are included chapters related to psychological, sociological, assistential and existential characteristics of the people in the end of their lives admitted to the Hospital de S. Bernardo, in Setúbal. In this first part, considerations about the characteristics and the functioning of the Hospital de S. Bernardo are included, and the experience of the author as a nurse in that hospital, mainly in the domain of serious ill people and in terminal situations. The second part of the work, under the designation of “Attempt of evaluation of the knowledge and attitudes of the nurses towards the end-of-life person”, includes a study based on the answers given by the nurses of the Hospital de S. Bernardo to an inquiry centred on their opinion about their own professional preparation, about the most relevant ethical questions, their knowledge, their capacities and their performance in the areas of care given to the seriously ill and end-of-life people. The population sample of the nurses of the Hospital de S. Bernardo which acted as the base to this study was an opportunity sampling and it included fifty nurses. The selection criteria were established according to concepts of theoretical, ethical and operational order. They consisted of the following ones: a) to be a nurse of an Emergency, Medicine or Surgery Service at the Hospital de S. Bernardo.; b) to agree on participating in the study; c) to show evidence of motivation to participate in the study. The questionnaire presented was composed by thirty-two closed questions and one open question. The first four questions were related with the social-demographic domain and the professional experience. The subsequent questions referred to the knowledge, the nature of the care given and to the opinions about the quality of the end-of-life care. These were Lickert type closed questions. The last question asked was an open question on the strategies to improve the support to the person/family/ significant person who was in end of his or her life and admitted to the hospital. The answers to the last question were interpreted according to codifications and grouped in categories. The answers were collected and analyzed having been submitted to the appreciation of exterior and neutral judges, experts in the area of qualitative investigation and in the area of the end-of-life person. The conclusions of the work were the following ones: a) The professional knowledge about the end-of-life person was referred by 44,0% of the nurses as, Insufficient, 30.0% Good, 22.0% Sufficient and 4.0%. Excellent. b) The knowledge acquired during the academic preparation about the end-of-life person was referred as 38.0% Sufficient, 32.0% Insufficient, 20.0% Good and 10.0% Very Good. c) The knowledge acquired at postgraduate continuous formation was referred as 44.0% Sufficient, 28.0% Insufficient, 18.0% Good and 10.0% Very Good. d) The knowledge acquired at activities directed to the specific formation on the end-oflife person was referred as 32.0% Insufficient, 32.0% Sufficient, 20.0% Good, 12.0% Very Good, and 4.0% Excellent. e) The conditions of accommodation in the Hospital de S. Bernardo to the end-of-life person were considered 50.0% Sufficient, 30.0% Insufficient, 10.0% Good and 10.0% Very Good. f) As far as care given to the end-of-life person is concerned, essential to his or her dignity as a person, from the analgesia to the possible feeding, the comfort and the personal presence, they considered as: f1) Within the Hospital de S. Bernardo, 60.0% of the inquired nurses Good, 32.0% Sufficient and 8.0% Very Good. f2) Within all the city of Setúbal, 84.0% Sufficient and 16.0% Insufficient. f3) In hospitals in general, 84.0% Sufficient and 16.0% Insufficient. f4) Within all the country 52.0% Sufficient and 48.0% Insufficient. g) The answers of the inquired nurses about the best place to take care of the end-of-life persons were the following ones: g1) - In specific units with this purpose, 62.0% considered Excellent, 32.0% Very Good and 6.0% Good. g2) - In specialized units in the hospitals, 58.0% Excellent, 36.0% Very Good and 6.0% Good. g3) - In common infirmaries in the hospitals, 50.0%, Insufficient, 20.0% Very Good, 12.0% Excellent, 10.0% Sufficient, 8.0% Good. g4) – In their homes with hospital support, 48.0% Excellent, 44.0% Very Good and 8.0% Good. g5) - In specialized units outside hospitals 48.0% Very Good, 40.0% Excellent and 12.0% Good. g6) - The care given to the end-of-life people with specialized extra-hospital support 52.0% had answered Excellent, 40.0% Very Good and 8.0% Good. h) - The nurses considered the presence of a relative/ significant person closed to the hospitalized end-of-life person as, 60.0% Excellent, 36.0% Very Good and 4.0% Good. i) - The nurses answered about the end-of-life person’s decision making on the presence of relative/ significant person closed to him or her as, 62.0% Excellent, 36.0%Very Good and 2.0% Good. j) – The answers given by the nurses about the health professionals’ decision making on the presence of relative/ significant person closed to the end-of-life person as, 86.0% Very Good, 10.0% Good and 4.0% Excellent. l) - On the integration of a relative/ significant person in team which takes care of of end-of-life people, the nurses considered as, 66.0% Very Good, 28.0% Excellent and 6.0% Good. m) - On the participation of the family/significant person in taking care of of the hospitalized end-of-life person, 50.0% considered as, Very Good, 34.0% Excellent and 16.0% Good. n) - The answers of the inquired nurses about permitting the visit of a relative/ significant person to the hospitalized end-of-life person out of the regular visiting schedule, 52.0% referred it as, Very Good, 30.0% Excellent, 16.0% Good and 2.0% Sufficient. o ) - The answers of the inquired nurses on the good quality of the information to the patient on his or her end-of-life situation, 38.0% Very Good, 28.0% Excellent, 28.0% Good and 6.0% Sufficient. p) - The answers to the question on the health professionals’ acceptance of actions intended to the promotion of the end-of-life dignity were, 66.0% considered it as Very Good, 20.0% Excellent and 14.0% Good. q) - The answers to the question on the support to the family/significant person during mourning, 70.0% Very Good, 16.0% Good and 14.0% Excellent. r) - As for the psychological assistance and support to the health professionals who take care of end-of-life hospitalized persons, 52.0% Very Good, 38.0% Excellent and 10.0% Good. s) - As for the existence of dialogue and reflection on the end-of-life situations within the multidisciplinary team, they considered 46.0% Excellent, 42.0% Very Good and 12.0% Good. t) - On the existence of activities to sensitize the health professionals on the topic “endof- life person” in the institution had related 72.0% Excellent, 20.0% Very Good and 8.0% Good. u) - On the existence of directives in the institution and protocols related to the assistance to the patient/family/significant person during the process of dying, they considered 72.0% Excellent, 18.0% Very Good, 8.0% Good and 2.0% did not answer. v) - The answers that the nurses formulated to the open question were, themselves, considered in this work as proposals of intervention in the hospital.
The conceptual framing of the work was centred in the end-of-life human person. The text produced comprises two parts. In the first part, under the title “The end-of-life person”, are included chapters related to psychological, sociological, assistential and existential characteristics of the people in the end of their lives admitted to the Hospital de S. Bernardo, in Setúbal. In this first part, considerations about the characteristics and the functioning of the Hospital de S. Bernardo are included, and the experience of the author as a nurse in that hospital, mainly in the domain of serious ill people and in terminal situations. The second part of the work, under the designation of “Attempt of evaluation of the knowledge and attitudes of the nurses towards the end-of-life person”, includes a study based on the answers given by the nurses of the Hospital de S. Bernardo to an inquiry centred on their opinion about their own professional preparation, about the most relevant ethical questions, their knowledge, their capacities and their performance in the areas of care given to the seriously ill and end-of-life people. The population sample of the nurses of the Hospital de S. Bernardo which acted as the base to this study was an opportunity sampling and it included fifty nurses. The selection criteria were established according to concepts of theoretical, ethical and operational order. They consisted of the following ones: a) to be a nurse of an Emergency, Medicine or Surgery Service at the Hospital de S. Bernardo.; b) to agree on participating in the study; c) to show evidence of motivation to participate in the study. The questionnaire presented was composed by thirty-two closed questions and one open question. The first four questions were related with the social-demographic domain and the professional experience. The subsequent questions referred to the knowledge, the nature of the care given and to the opinions about the quality of the end-of-life care. These were Lickert type closed questions. The last question asked was an open question on the strategies to improve the support to the person/family/ significant person who was in end of his or her life and admitted to the hospital. The answers to the last question were interpreted according to codifications and grouped in categories. The answers were collected and analyzed having been submitted to the appreciation of exterior and neutral judges, experts in the area of qualitative investigation and in the area of the end-of-life person. The conclusions of the work were the following ones: a) The professional knowledge about the end-of-life person was referred by 44,0% of the nurses as, Insufficient, 30.0% Good, 22.0% Sufficient and 4.0%. Excellent. b) The knowledge acquired during the academic preparation about the end-of-life person was referred as 38.0% Sufficient, 32.0% Insufficient, 20.0% Good and 10.0% Very Good. c) The knowledge acquired at postgraduate continuous formation was referred as 44.0% Sufficient, 28.0% Insufficient, 18.0% Good and 10.0% Very Good. d) The knowledge acquired at activities directed to the specific formation on the end-oflife person was referred as 32.0% Insufficient, 32.0% Sufficient, 20.0% Good, 12.0% Very Good, and 4.0% Excellent. e) The conditions of accommodation in the Hospital de S. Bernardo to the end-of-life person were considered 50.0% Sufficient, 30.0% Insufficient, 10.0% Good and 10.0% Very Good. f) As far as care given to the end-of-life person is concerned, essential to his or her dignity as a person, from the analgesia to the possible feeding, the comfort and the personal presence, they considered as: f1) Within the Hospital de S. Bernardo, 60.0% of the inquired nurses Good, 32.0% Sufficient and 8.0% Very Good. f2) Within all the city of Setúbal, 84.0% Sufficient and 16.0% Insufficient. f3) In hospitals in general, 84.0% Sufficient and 16.0% Insufficient. f4) Within all the country 52.0% Sufficient and 48.0% Insufficient. g) The answers of the inquired nurses about the best place to take care of the end-of-life persons were the following ones: g1) - In specific units with this purpose, 62.0% considered Excellent, 32.0% Very Good and 6.0% Good. g2) - In specialized units in the hospitals, 58.0% Excellent, 36.0% Very Good and 6.0% Good. g3) - In common infirmaries in the hospitals, 50.0%, Insufficient, 20.0% Very Good, 12.0% Excellent, 10.0% Sufficient, 8.0% Good. g4) – In their homes with hospital support, 48.0% Excellent, 44.0% Very Good and 8.0% Good. g5) - In specialized units outside hospitals 48.0% Very Good, 40.0% Excellent and 12.0% Good. g6) - The care given to the end-of-life people with specialized extra-hospital support 52.0% had answered Excellent, 40.0% Very Good and 8.0% Good. h) - The nurses considered the presence of a relative/ significant person closed to the hospitalized end-of-life person as, 60.0% Excellent, 36.0% Very Good and 4.0% Good. i) - The nurses answered about the end-of-life person’s decision making on the presence of relative/ significant person closed to him or her as, 62.0% Excellent, 36.0%Very Good and 2.0% Good. j) – The answers given by the nurses about the health professionals’ decision making on the presence of relative/ significant person closed to the end-of-life person as, 86.0% Very Good, 10.0% Good and 4.0% Excellent. l) - On the integration of a relative/ significant person in team which takes care of of end-of-life people, the nurses considered as, 66.0% Very Good, 28.0% Excellent and 6.0% Good. m) - On the participation of the family/significant person in taking care of of the hospitalized end-of-life person, 50.0% considered as, Very Good, 34.0% Excellent and 16.0% Good. n) - The answers of the inquired nurses about permitting the visit of a relative/ significant person to the hospitalized end-of-life person out of the regular visiting schedule, 52.0% referred it as, Very Good, 30.0% Excellent, 16.0% Good and 2.0% Sufficient. o ) - The answers of the inquired nurses on the good quality of the information to the patient on his or her end-of-life situation, 38.0% Very Good, 28.0% Excellent, 28.0% Good and 6.0% Sufficient. p) - The answers to the question on the health professionals’ acceptance of actions intended to the promotion of the end-of-life dignity were, 66.0% considered it as Very Good, 20.0% Excellent and 14.0% Good. q) - The answers to the question on the support to the family/significant person during mourning, 70.0% Very Good, 16.0% Good and 14.0% Excellent. r) - As for the psychological assistance and support to the health professionals who take care of end-of-life hospitalized persons, 52.0% Very Good, 38.0% Excellent and 10.0% Good. s) - As for the existence of dialogue and reflection on the end-of-life situations within the multidisciplinary team, they considered 46.0% Excellent, 42.0% Very Good and 12.0% Good. t) - On the existence of activities to sensitize the health professionals on the topic “endof- life person” in the institution had related 72.0% Excellent, 20.0% Very Good and 8.0% Good. u) - On the existence of directives in the institution and protocols related to the assistance to the patient/family/significant person during the process of dying, they considered 72.0% Excellent, 18.0% Very Good, 8.0% Good and 2.0% did not answer. v) - The answers that the nurses formulated to the open question were, themselves, considered in this work as proposals of intervention in the hospital.
Descrição
Tese de mestrado em Bioética, apresentada à Faculdade de Medicina da Universidade de Lisboa, 2008
Palavras-chave
Bioética Cuidados a doentes terminais Enfermeiros Teses de mestrado - 2008