The Dying and the Disabled: Is End-Of-Life Care Adequate?

 

Tristan Lederman’s health started to take a turn at the beginning of 2017.

Tristan lived at home with his family and depended on his family members and at-home caregivers to care for him completely. Tristan was hydrocephalic and was born with cerebral palsy and needed assistance doing everything from walking, brushing his teeth, using the restroom and everything else.

At the beginning of 2017, at the age of 34, Tristan started to get bad rashes and started having seizures. He started sleeping more and more and moaning like he was in pain, even bursting into tears at times.

His parents knew something was wrong with him and turned towards the doctors for guidance.

They received no reassurance or assistance in understanding what was wrong with Tristan until it was almost too late.

Tristan’s family says they asked the doctors if their son was dying, and said the doctors would not answer their questions or help them in minimizing Tristan’s pain.

They also claimed that the doctors provided inadequate at home palliative care to manage Tristan’s pain. It was not until a few short months before Tristan’s death in August 2017 that doctors who specialize in at-home palliative care came to the house and brought a pain pump to help manage Tristan’s pain.

Tristan died on October 8, 2017.

Dr. Kyle Sue a physician in Canada says unfortunately, Tristan’s case is more common than we might want to believe. Dr. Sue works in adult and pediatric palliative care and says there needs to be more awareness, education, and exposure to understand the issues and challenges that these patients have and the best way to support them.

Many people who have disabilities and need serious care are living longer. While once they might have been institutionalized, now they often live with family members and many medical schools are lagging behind in education. Many schools do not have curriculum to educate about end-of-life care for patients with disabilities.

Dr. Adam Rapaport is a medical doctor at one of the rare hospices in Canada for kids with special needs. He recommends that doctors reach out to other doctors, such as palliative care physicians, if they have questions or feel uncertain about caring for a patient.

The Ledermans filed a complaint about their experience with the medical team’s care surrounding their son’s death, and they are lobbying for better palliative care for people with special needs.

Read the original article about Tristan here.


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