Disagreements over Management & Treatment

If parents/carers of a child with SMA or an adult with SMA disagrees with their medical team re: management and treatment options

Management and treatment of SMA is guided by the 2017 International Standards of Care1,2.This can involve complex information and decision making and there may be times when the parents/carers of a child with SMA or an adult with SMA does not agree with the advice of their medical team. At such times, it is vital that all involved have the opportunity to clearly express their views and have them considered carefully. The parents/carers/adult must have access to appropriate advocacy support to ensure the reasons for their position are clearly expressed. This is an area of advocacy expertise we do not possess.

We will:

  • acknowledge the distress that any disagreement would cause both the parents/carers/ adult and medical team
  • express that, disagreements between parents/carers/an adult and the medical team can sometimes be the result of misunderstandings and highlights the need for clear empathetic communication on both sides
  • ensure that anyone in this position has contact details for the Patient Advocacy and Liaison Service (PALS) and knows that, through them they can, if necessary, access the hospital’s complaints service / ethics committee, human rights lawyers etc.
  • express the hope that the parents/carers/adult and medical team will be supported to express their views, perhaps through a multi-disciplinary clinical ethics committee of clinicians, social workers, lawyers, chaplains, ethicists and lay persons who are not involved in the direct care of the patient.
  • advise that by allowing each party to voice their concerns and to clarify their values, the consultation process itself usually helps to ease the tension between the parties.
  • advise that we would not take sides, either in public or privately, between parents/carers/an adult and clinicians
  • emphasise that if this situation becomes public, we never talk publicly about individual cases
  • continue to offer emotional support to the parents/carers/adult during this time

July 2018

1. Eugenio Mercuri, et al., Diagnosis and management of spinal muscular atrophy: Part 1 Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscular Disorders (2017), doi: 10.1016/j.nmd.2017.11.005 

2. Richard S. Finkel, et al., Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organs systems; and ethics, Neuromuscular Disorders (2017), doi: 10.1016/j.nmd.2017.11.004