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“Truly holistic?” Differences in documenting physical and psychosocial needs and hope in Portuguese palliative patients

Published online by Cambridge University Press:  25 June 2020

Miguel Julião Open the ORCID record for Miguel Julião [Opens in a new window] ,
Maria Ana Sobral ,
Paula Calçada ,
Bárbara Antunes Open the ORCID record for Bárbara Antunes [Opens in a new window] ,
Baltazar Nunes ,
Ana Bragança ,
Daniela Runa ,
Paulo Faria de Sousa ,
Harvey Max Chochinov  and
Eduardo Bruera
Miguel Julião*
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Maria Ana Sobral
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Paula Calçada
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Bárbara Antunes
Affiliation:
Primary Care Unit - Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK Centro de Estudos e Investigação em Saúde da Universidade de Coimbra, Porto, Portugal Faculty of Medicine, University of Porto, Porto, Portugal King's College London, Department of Midwifery and Palliative Care, Florence Nightingale School of Nursing, London, UK
Baltazar Nunes
Affiliation:
Departamento de Epidemiologia, Instituto Nacional de Saúde Dr. Ricardo Jorge; Centro de Investigação em Saúde Pública, Escola Nacional de Saúde Pública, Universidade NOVA de Lisboa, Lisboa, Portugal
Ana Bragança
Affiliation:
Agrupamento de Centros de Saúde de Lisboa Central, Lisboa, Portugal
Daniela Runa
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Paulo Faria de Sousa
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Harvey Max Chochinov
Affiliation:
Department of Psychiatry, Research Institute of Oncology and Hematology, Cancer Care Manitoba, Manitoba, Canada
Eduardo Bruera
Affiliation:
Department of Palliative, Rehabilitation and Integrative Medicine, University of Texas MD Anderson Cancer Center, Houston, TX, USA
*
Author for correspondence: Miguel Julião, Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal. E-mail: migueljuliao@gmail.com
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Abstract

Objective

Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation.

Method

The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018–January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question “Are you depressed?” (SQD), (3) the question “Do you feel anxious?” (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL).

Results

Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%).

Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively).

Significance of results

There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.

Keywords

DocumentationEnd-of-life careHopePalliative carePalliative patientsPhysical and psychosocial needs
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 1 , February 2021 , pp. 69 - 74
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Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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