Ignorance or Refusal: Determinants in the individual’s choice for palliative care

This article was exclusively written for The European Sting by Ms. Aryane Bastos de Souza, a student of the fourth period of Medicine of the State University of Rio Grande do Norte-UERN, Brazil. She is affiliated to the International Federation of Medical Students Associations (IFMSA), cordial partner of The Sting. The opinions expressed in this piece belong strictly to the writer and do not necessarily reflect IFMSA’s view on the topic, nor The European Sting’s one.

The lack of knowledge, as well as the distorted view regarding palliative care, corroborate the refusal of this line of care. Many patients and family members believe it is synonymous with abandonment and neglect with life when they choose this palliative path.

  However, unlike “being created to die”, the user will be assisted in a humane way. According to the World Health Organization (WHO) in 1990 – with a redefinition in 2002 – palliative care was defined as an approach that improves the quality of life of patients and families facing problems associated with diseases, through the prevention of pain and relief of suffering, through early identification, correct assessment and treatment of pain, and other physical, psychosocial and spiritual problems.

  In addition, palliative care encompasses a network of services and care and a multidisciplinary and interdisciplinary team, which are not available equally to all Brazilian citizens, which makes it difficult for users and their families to adhere.

  However, the Ministry of Health published Resolution MS-CIT No. 41/18 that regulates the provision of palliative care as part of continuous care integrated within the scope of the Unified Health System (SUS).   Thus, through this resolution, the aim is to guarantee the offer of this practice to individuals from the diagnosis of the disease to the terminal phase, allowing more quality of life for patients, whose disease has no cure.

  Furthermore, the standard defines that palliative care must be available everywhere in the network, from basic, home, outpatient, hospital, urgency and emergency care.

  However, one more aggravating factor arises, the issue of adequate housing to receive this patient, who will need an appropriate environment, greater attention on the part of his family and health professionals to provide assistance at home.

  In this context, once again, the obstacle to the issue of poor income distribution among Brazilian citizens and regions becomes noticeable.

  Given the above, it is up to the health professional to evaluate each case individually, to communicate clearly and objectively the nuances of each choice to the user and their caregivers.

  From then on, therefore, adherence to palliative care becomes more efficient, by providing responsible, respectful and honest assistance to patients and their families.

References

BRASIL. Resolução nº 41, de 31 de outubro de 2018. Dispõe sobre as diretrizes para a organização dos cuidados paliativos, à luz dos cuidados continuados integrados, no âmbito Sistema Único de Saúde (SUS). Brasília, 2018. Available from: http://www.in.gov.br/web/guest/materia/-/asset_publisher/Kujrw0TZC2Mb/content/id/51520746/do1-2018-11-23-resolucao-n-41-de-31-de-outubro-de-2018-51520710. Access on  20  Dec.  2020.

MATSUMOTO, D. Y. Cuidados Paliativos: conceito, fundamentos e princípios. In: CARVALHO, R. T.; PARSONS, H. A. (Org.) Manual de Cuidados Paliativos. São Paulo: Academia Nacional de Cuidados Paliativos (ANCP), 2012. p.23-30.

WORLD HEALTH ORGANIZATION. National cancer control programmes: policies and managerial guidelines. 2.ed. Geneva: WHO, 2002.

About the author

Aryane Bastos de Souza is a student of the fourth period of Medicine of the State University of Rio Grande do Norte-UERN. She is a Local Coordinator at the International Federation of Medical Students’ Associations (IFMSA). Participant in the ECAH extension project (Teaching Children Aspects of Hygiene). Participant of the Collective Health Study Group. Research Coordinator at LAPED (Pediatric Academic League). Secretary and Director of Communication of LATOCE (Academic League of Operative Technique and Experimental Surgery).

She believes that education and humanization are capable of transforming public health and alleviating inequalities.