End of Life Decision Making

End of Life Decision Making

The legal rights of the patient/client at the end of their life are the minimum ethical requirements. Capable individuals have a right to make their own decisions regarding their medical care. If that capability is called into question, they have the right to have their capacity assessed. The HCCA outlines the process that must be followed if a patient/client is deemed incapable, which includes the appointment of a Substitute Decision Maker (SDM). (HCCA, 1996)  It is important to note, however, that the final decision as to the plan of care rests with the patient/client or SDM. Not only is consent to treatment required, it is also necessary for “withdrawing” or “withholding” treatment. (HCCA, 1996)

A newborn infant with severe spinal muscular atrophy type 1 is requiring continuous non-invasive positive pressure ventilation (NIPPV). Because the prognosis is grave, the physician in charge of care has determined it to be “everyone’s best interest” to remove the baby from the machine. However, the parents want the treatment to continue, in the hopes that they can eventually go home. The RT has been asked to remove the NIPPV. How should they proceed?

The ethical principles involved are respect for the patient/client’s free will, which conflicts with the RTs need to do good and do no harm.

The healthcare team may have solid medical evidence surrounding long-term survival of this child and quality of life for the family, and should share the predicted outcome with the parents. However, the parents are the guardians and therefore, able to make decisions on behalf of the child. If an agreement on the plan of care cannot be obtained, and if the healthcare team feels that the parent’s decision is not in the child’s best interest, the case should be presented to the Consent and Capacity Review Board. In the interim, however, the parent’s decision stands, and the RT should refrain from removing the infant from NIPPV.

For more information, please see the CRTO Responsibilities under Consent Legislation PPG at: