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Palliative Care: Perceptions, Experiences, and Attitudes in a Peruvian Neurologic Hospital

  • Anastasia Vishnevetsky(corresponding author)
    ,
  • Carla Zapata Del Mar
    ,
  • Juan Luis Cam
    ,
  • ,
  • Claire J. Creutzfeldt
*Corresponding author for this work
  • Northern Pacific Global Health Consortium Fogarty Fellow
    ,
  • Perelman School of Medicine at the University of Pennsylvania
    ,
  • docencia y atención especializada en epilepsia
    ,
  • Instituto Nacional de Enfermedades Neoplásicas
    ,
  • University of Washington
Research Output:
Contribution to journal
Article
Peer-review

Publication Information

Output type

Research Output:
Contribution to journal
Article
Peer-review

Original language

English

Pages from-to (Number of pages)

Pages 250-257 (8 pages)

Journal (Volume, Issue Number)

Journal of Palliative Medicine (Volume 22, Issue 3)

Publication milestones

  • Published - 01/03/2019

Publication status

Published - 01/03/2019

ISSN

1096-6218

Publication IDs

  • Scopus: 85062013047
  • PubMed: 30526275

Abstract

The development of palliative care in Peru remains limited, particularly for nononcological services, such as neurology. The goal of this study was to explore attitudes toward and knowledge about palliative and end-of-life care among patients, families, nurses, and doctors in a specialized neurological institute in Lima, Peru. Materials and Methods: We used a mixed methods approach consisting of 78 surveys and 21 qualitative, semistructured interviews that were recorded, transcribed, and analyzed using thematic analysis. Results: Surveys identified a substantial need for palliative care in the neurological institute (63% of doctors and 77% of nurses reported palliative care needs in >30% of their patients), and for training (82% of doctors and 69% of nurses reported inadequate palliative care education). The key themes emerging from qualitative interviews concerned transparency of communication about prognosis and end-of-life choices in neurological disease. Familiarity with advance directives was limited among both clinicians and families, and participants were divided about whether or not patients should be informed of serious diagnoses and prognoses, and who should inform them. Barriers to transparency in patient-physician communication included (1) expectation of cure; (2) physician's lack of training in communication and end-of-life care; (3) a paternalistic culture; and (4) the nature of neurological diseases. Conclusions: Our study highlights opportunities to enhance palliative care and communication education for neurology providers and the public in Peru, a country that currently has no palliative care training program and no legal basis for advance directives.

Funding Details

Dr. Anastasia Vishnevetsky received funding from the NIH. Dr. Carla Zapata del Mar, Dr. Juan Luis Cam, and Dr. Mario Cornejo-Olivas reports no conflicting interests. Dr. Claire Creutzfeldt received funding from the Cambia Health Foundation. The authors thank Miguel Inca-Martinez, Indira Tirado, Karina Milla-Neyra, Maryenela Illanes-Manrique, Danny Barientos-Iman, Carlos Abanto, and Diana Salazar Sauñe for logistical support with conducting the study. They thank Ximena Salazar Lostaunau for help with the qualitative interview training, and guidance in qualitative methodology. They also thank Sol Salazar for performing the interview transcriptions, and Angelica Gamarra for her role in participant recruitment and qualitative interviewing. The authors thank Joseph Zunt for critical review of the article, and guidance throughout the project execution. This project was supported by the NIH [Research Training Grant #R25 TW009345] funded by the Fogarty International Center, the NIH Office of the Director, Office of AIDS Research, the NIH Office of the Director Office of Research on Women’s Health, the National Heart, Lung, and Blood Institute, the National Institute of Mental Health, and the National Institute of General Medical Sciences.
FundersFunding numbers
NIH
25 TW009345
NIMH
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NHLBI
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OD
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NIGMS
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FIC
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OAR
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CHF
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