DESK REVIEWS | 04.05.03.01. Advance care directives

DESK REVIEW | 04.05.03.01. Advance care directives

Yes. Although there is no law specifically outlining advance care directives, the Brazilian Ministry of Health has regulated palliative care in SUS through Normative No. 41 (2018). In this regulation, advance care directives are considered for all people with any life threatening disease, including dementia (Brazilian Ministry of Health, 2019b).

References:

Brazilian Ministry of Health. (2019b). Cuidados Paliativos no SUS. Ministério Da Saúde.

The Mental Health Care Act (2017) has certain provisions that are relevant to persons with dementia such as advance directives (Kumar et al., 2019). In addition, clinicians and persons with dementia must be made also aware of (Shaji et al., 2021) certain concerns related to this.

References:

Kumar, C.T.S., Shaji, K.S., Varghese, M., Nair, M.K.C. (Eds) Dementia in India 2020. Cochin: Alzheimer’s and Related Disorders Society of India (ARDSI), Cochin Chapter, 2019. Available from: https://dementiacarenotes.in/dcnfiles/Dementia-in-India-2020.pdf

Shaji, K. S., Chandran, N., Chandra, M., & Kumar, R. (2021). Assessment of Dementia Under Prevailing Indian Laws and Its Implications. Indian journal of psychological medicine43(5 Suppl), S13–S18. https://doi.org/10.1177/02537176211023272

There is no specific legislation found regarding advanced care directives.

The Official Mexican Standard on Criteria for the Care of Terminally Ill Patients with Palliative Care 011 (DOF – Diario Oficial de la Federación, 2014), includes support management as part of the continuum in the care of patients in advanced disease, which indicates that the management should follow this order: 1. Curative intention, 2. Symptomatic support, 3. Palliative care, 4. Patient close to death, 5. Agony, and 6. Bereavement.

Although it was issued in 2014, it was not until 2018 that dementia was specifically identified in an annex, where the following recommendations are made:

  1. Assessment of functional status
  2. Evaluation of comorbid situations and quality of care
  3. Limitations: Inability to transfer from one place to another and to dress without assistance, inability to bathe properly, fecal and urinary incontinence, inability to communicate intelligibly
  4. Presence of medical complications
  5. Comorbid conditions associated with dementia (aspiration pneumonia, decubitus ulcers, pyelonephritis, or lower urinary tract infection, etc.)
  6. Difficulty swallowing food or refusing to eat, and in those receiving nasogastric tube feeding, deterioration of nutritional status.

In a general way the norm points out:

  1. Areas of attention: Patients must be identified and diagnosed with an advanced disease limiting life by the doctors treating the Health Units
  2. Palliative management plan for the patient and his or her family, proposed by the multidisciplinary health team
  3. The patient and the family are guided and trained to carry out the role of care, to continue their care in the best family environment and to be able to refer the patient properly to their home.

This service is free in Health Units and home care must be received. However, given the infrastructure of the Mexican health system, it has not been possible to adequately implement this standard.

References:

DOF – Diario Oficial de la Federación. (2014). ACUERDO que modifica el Anexo Único del diverso por el que el Consejo de Salubridad General declara la obligatoriedad de los Esquemas de Manejo Integral de Cuidados Paliativos, así como los procesos señalados en la Guía del Manejo Integral de Cuidados Paliativos. https://www.dof.gob.mx/nota_detalle.php?codigo=5534718&fecha=14/08/2018&print=true

Laws in South Africa generally protect against discrimination on the grounds of race, age, sex, gender, pregnancy, marital status, ethnic or social origin, colour, sexual orientation, disability, religion, conscience, belief, culture, language and birth. Provisions in RSA are not dementia-specific and despite recommendations and mobilisation for reform, advance directives or ‘living wills’ are not legally recognised as enforceable instructions in South Africa (Jordaan, 2011).

References:

Jordaan, L. (2011). The legal validity of an advance refusal of medical treatment in South African law (part 1). De Jure, 44(1), 32–48. http://www.scielo.org.za/pdf/dejure/v44n1/04.pdf