Variability in the perception of palliative care and end-of-life care among hematology professionals from the same reference center in Bahia, Brazil: A descriptive cross-sectional study

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ABSTRACT

BACKGROUND:

There are several illness-specific cultural and system-based barriers to palliative care (PC) integration and end-of-life (EOL) care in the field of oncohematology.

OBJECTIVES:

This study aimed to investigate the variability in the perceptions of PC and EOL care.

DESIGN AND SETTING:

A cross-sectional study was conducted in the Hematology Division of our University Hospital in Salvador, Bahia, Brazil.

METHODS:

Twenty physicians responded to a sociodemographic questionnaire and an adaptation of clinical questionnaires used in previous studies from October to December 2022.

RESULTS:

The median age of the participants was 44 years, 80% of the participants identified as female, and 75% were hematologists. Participants faced a hypothetical scenario involving the treatment of a 65-year-old female with a poor prognosis acute myeloid leukemia refractory to first-line treatment. Sixty percent of the participants chose to follow other chemotherapy regimens, whereas 40% opted for PC. Next, participants considered case salvage for the patient who developed septic shock following chemotherapy and were prompted to choose their most probable conduct, and the conduct they thought would be better for the patient. Even though participants were from the same center, we found a divergence from the most probable conduct among 40% of the participants, which was due to personal convictions, legal aspects, and other physicians’ reactions.

CONCLUSIONS:

We found considerable differences in the perception of PC and EOL care among professionals, despite following the same protocols. The study also demonstrated variations between healthcare professionals’ beliefs and practices and persistent historical tendencies to prioritize aggressive interventions.

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Most cited references 38

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Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment.

Alexi A Wright (2008)

Talking about death can be difficult. Without evidence that end-of-life discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern of inflicting psychological harm. To determine whether end-of-life discussions with physicians are associated with fewer aggressive interventions. A US multisite, prospective, longitudinal cohort study of patients with advanced cancer and their informal caregivers (n = 332 dyads), September 2002-February 2008. Patients were followed up from enrollment to death, a median of 4.4 months later. Bereaved caregivers' psychiatric illness and quality of life was assessed a median of 6.5 months later. Aggressive medical care (eg, ventilation, resuscitation) and hospice in the final week of life. Secondary outcomes included patients' mental health and caregivers' bereavement adjustment. One hundred twenty-three of 332 (37.0%) patients reported having end-of-life discussions before baseline. Such discussions were not associated with higher rates of major depressive disorder (8.3% vs 5.8%; adjusted odds ratio [OR], 1.33; 95% confidence interval [CI], 0.54-3.32), or more worry (mean McGill score, 6.5 vs 7.0; P = .19). After propensity-score weighted adjustment, end-of-life discussions were associated with lower rates of ventilation (1.6% vs 11.0%; adjusted OR, 0.26; 95% CI, 0.08-0.83), resuscitation (0.8% vs 6.7%; adjusted OR, 0.16; 95% CI, 0.03-0.80), ICU admission (4.1% vs 12.4%; adjusted OR, 0.35; 95% CI, 0.14-0.90), and earlier hospice enrollment (65.6% vs 44.5%; adjusted OR, 1.65;95% CI, 1.04-2.63). In adjusted analyses, more aggressive medical care was associated with worse patient quality of life (6.4 vs 4.6; F = 3.61, P = .01) and higher risk of major depressive disorder in bereaved caregivers (adjusted OR, 3.37; 95% CI, 1.12-10.13), whereas longer hospice stays were associated with better patient quality of life (mean score, 5.6 vs 6.9; F = 3.70, P = .01). Better patient quality of life was associated with better caregiver quality of life at follow-up (beta = .20; P = .001). End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.

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Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial.

Camilla Zimmermann, Nadia Swami, Monika Krzyzanowska … (2014)

Patients with advanced cancer have reduced quality of life, which tends to worsen towards the end of life. We assessed the effect of early palliative care in patients with advanced cancer on several aspects of quality of life. The study took place at the Princess Margaret Cancer Centre (Toronto, ON, Canada), between Dec 1, 2006, and Feb 28, 2011. 24 medical oncology clinics were cluster randomised (in a 1:1 ratio, using a computer-generated sequence, stratified by clinic size and tumour site [four lung, eight gastrointestinal, four genitourinary, six breast, two gynaecological]), to consultation and follow-up (at least monthly) by a palliative care team or to standard cancer care. Complete masking of interventions was not possible; however, patients provided written informed consent to participate in their own study group, without being informed of the existence of another group. Eligible patients had advanced cancer, European Cooperative Oncology Group performance status of 0-2, and a clinical prognosis of 6-24 months. Quality of life (Functional Assessment of Chronic Illness Therapy--Spiritual Well-Being [FACIT-Sp] scale and Quality of Life at the End of Life [QUAL-E] scale), symptom severity (Edmonton Symptom Assessment System [ESAS]), satisfaction with care (FAMCARE-P16), and problems with medical interactions (Cancer Rehabilitation Evaluation System Medical Interaction Subscale [CARES-MIS]) were measured at baseline and monthly for 4 months. The primary outcome was change score for FACIT-Sp at 3 months. Secondary endpoints included change score for FACIT-Sp at 4 months and change scores for other scales at 3 and 4 months. This trial is registered with ClinicalTrials.gov, number NCT01248624. 461 patients completed baseline measures (228 intervention, 233 control); 393 completed at least one follow-up assessment. At 3-months, there was a non-significant difference in change score for FACIT-Sp between intervention and control groups (3·56 points [95% CI -0·27 to 7·40], p=0·07), a significant difference in QUAL-E (2·25 [0·01 to 4·49], p=0·05) and FAMCARE-P16 (3·79 [1·74 to 5·85], p=0·0003), and no difference in ESAS (-1·70 [-5·26 to 1·87], p=0·33) or CARES-MIS (-0·66 [-2·25 to 0·94], p=0·40). At 4 months, there were significant differences in change scores for all outcomes except CARES-MIS. All differences favoured the intervention group. Although the difference in quality of life was non-significant at the primary endpoint, this trial shows promising findings that support early palliative care for patients with advanced cancer. Canadian Cancer Society, Ontario Ministry of Health and Long Term Care. Copyright © 2014 Elsevier Ltd. All rights reserved.

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Integration of oncology and palliative care: a Lancet Oncology Commission

Stein Kaasa, Jon H Loge, Matti Aapro … (2018)

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

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Author and article information

Contributors

Diego Lopes Paim Miranda:

ORCID: http://orcid.org/0000-0002-9107-5600

Role: drafting the articleRole: conception and design of the studyRole: acquisition of dataRole: analysisRole: interpretation of dataRole: reviewed and approved the final version of the manuscript submitted for publication

Alini Maria Orathes Ponte Silva:

ORCID: http://orcid.org/0009-0001-4864-2112

Role: drafting the articleRole: acquisition of dataRole: analysisRole: interpretation of dataRole: reviewed and approved the final version of the manuscript submitted for publication

David Pereira Ferreira:

ORCID: http://orcid.org/0009-0003-0711-5812

Role: conception and design of the studyRole: analysisRole: interpretation of dataRole: reviewed and approved the final version of the manuscript submitted for publication

Laís Teixeira da Silva:

ORCID: http://orcid.org/0000-0003-0672-0079

Role: conception and design of the studyRole: analysisRole: interpretation of dataRole: reviewed and approved the final version of the manuscript submitted for publication

Liliane Lins-Kusterer:

ORCID: http://orcid.org/0000-0003-3736-0002

Role: analysis and interpretation of dataRole: reviewed and approved the final version of the manuscript submitted for publication

Edvan de Queiroz Crusoé:

ORCID: http://orcid.org/0000-0002-8599-4731

Role: analysis and interpretation of dataRole: reviewed and approved the final version of the manuscript submitted for publication

Marianna Batista Vieira Lima:

ORCID: http://orcid.org/0009-0002-1391-8817

Role: analysis and interpretation of dataRole: reviewed and approved the final version of the manuscript submitted for publication

Marco Aurélio Salvino:

ORCID: http://orcid.org/0000-0001-5885-869X

Role: conception and design of the studyRole: acquisition of dataRole: analysisRole: interpretation of dataRole: reviewed and approved the final version of the manuscript submitted for publication

Journal

Journal ID (nlm-ta): Sao Paulo Med J

Journal ID (iso-abbrev): Sao Paulo Med J

Journal ID (publisher-id): spmj

Title: São Paulo Medical Journal

Publisher: Associação Paulista de Medicina - APM

ISSN (Print): 1516-3180

ISSN (Electronic): 1806-9460

Publication date (Electronic, pub): 23 February 2024

Publication date (Electronic, collection): 2024

Volume: 142

Issue: 4

Electronic Location Identifier: e2023225

Affiliations

[I ]MD. MSc student, Postgraduate Program in Medicine and Health, Professor Edgard Santos University Hospital, Medical School, Universidade Federal da Bahia (UFBA), Salvador (BA), Brazil.

[II ]MD. MSc student, Postgraduate Program in Medicine and Health, Professor Edgard Santos University Hospital, Medical School, Universidade Federal da Bahia (UFBA), Salvador (BA), Brazil.

[III ]Medicine Student, Medical School, Universidade Federal da Bahia (UFBA), Salvador (BA), Brazil.

[IV ]MD. MSc student, Postgraduate Program in Medicine and Health, Professor Edgard Santos University Hospital, Medical School, Universidade Federal da Bahia (UFBA), Salvador (BA), Brazil.

[V ]PhD. Dental Surgeon, Professor, Postgraduate Program in Medicine and Health, Department of Preventive and Social Medicine Medical School, Universidade Federal da Bahia (UFBA), Salvador (BA), Brazil.

[VI ]MD, PhD. Hospital Universitário Professor Edgard Santos (HUPES), Universidade Federal da Bahia (UFBA), Salvador (BA), Brazil.

[VII ]MD. Physician, Hospital Universitário Professor Edgard Santos (HUPES), Universidade Federal da Bahia (UFBA), Salvador (BA), Brazil.

[VIII ]MD, PhD. Associate Professor, Postgraduate Program in Medicine and Health, Professor Edgard Santos University Hospital, Medical School, Universidade Federal da Bahia (UFBA), Salvador (BA), Brazil.

Author notes

Address for correspondence: Diego Lopes Paim Miranda, Programa de Pós-Graduação em Medicina e Saúde, Universidade Federal, da Bahia (PPGMS-UFBA), Rua Doutor Augusto Viana, s/n – Canela, Salvador (BA), Brazil, CEP 40110-060, Tel.: +55 (71) 99615-6385 E-mail: diegolpmiranda@ 123456hotmail.com

Postgraduate Program in Medicine and Heath, Professor Edgard Santos University Hospital, Medical School, Universidade Federal da Bahia (UFBA), Salvador (BA), Brazil.

Conflicts of interest: None

Editor responsible for the evaluation process: Paulo Manuel Pêgo-Fernandes, MD, PhD

Author information

Diego Lopes Paim Miranda http://orcid.org/0000-0002-9107-5600

Alini Maria Orathes Ponte Silva http://orcid.org/0009-0001-4864-2112

David Pereira Ferreira http://orcid.org/0009-0003-0711-5812

Laís Teixeira da Silva http://orcid.org/0000-0003-0672-0079

Liliane Lins-Kusterer http://orcid.org/0000-0003-3736-0002

Edvan de Queiroz Crusoé http://orcid.org/0000-0002-8599-4731

Marianna Batista Vieira Lima http://orcid.org/0009-0002-1391-8817

Marco Aurélio Salvino http://orcid.org/0000-0001-5885-869X

Article

Other ID: 00203

DOI: 10.1590/1516-3180.2023.0255.R1.29112023

PMC ID: 10885630

SO-VID: b1e1b8fa-52c7-429c-acef-f23986cc8bbe

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License

History

Date received : 15 August 2023

Date revision received : 31 October 2023

Date accepted : 29 November 2023

Page count

Figures: 1, Tables: 3, References: 35

Variability in the perception of palliative care and end-of-life care among hematology professionals from the same reference center in Bahia, Brazil: A descriptive cross-sectional study

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ABSTRACT

BACKGROUND:

OBJECTIVES:

DESIGN AND SETTING:

METHODS:

RESULTS:

CONCLUSIONS:

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SciELO Brazil

Most cited references 38

Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment.

Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial.

Integration of oncology and palliative care: a Lancet Oncology Commission

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