FiRe 2017: Thinking in Systems: Misdiagnosed to Undiagnosed – Part Deux

By Ahrash Poursaid

Katia Moritz, filmmaker and psychologist led a breakout session continuing the discussion about her upcoming film “Undiagnosed” at the FiRe conference on patients with terminal disease. The session was collaborative with all the participating members.

Moritz began the panel discussing further about Alex, the eleven year old boy who suffers from seizures, and the importance on the focus of undiagnosed patients. Moritz mentioned that Alex and his mother were planning on making an appearance to the conference but unfortunately this was not the case because Alex was in the ICU due to respiratory complications.

This fear of the unknown can be paralyzing for parents taking care of their children with terminal disease. Not knowing how to take care of their children or how much longer time to live they may have can be strenuous on these parents.

Hospice care can be a challenge not just on the patients but on the families as well. Many of the patients go into hospice not knowing what disease/condition they have or how much longer they have to live. They end up leaving and going into regular hospitals or some cases leave in general.

Moritz quoted Jeff Lowe, an avid climber who has been in and out of hospice care, who said that every time he moved his ice pick while climbing, it was more terrifying than worrying about when he may die sitting in hospice.

“Being sick is the furthest you can be from dying,” said Moritz and “These people try to live the most normal life they can”.

Moritz said patients in hospice care can be a strain on the families because they prepare to lose a loved one and many cases the patient does not die.

The talk turned to talk about supporting the supporters and one of the audience members, Diane Tober, Assistant Professor at UCSF asked Moritz what can be done about the stresses on caregivers.

When it comes to taking care of the patients and their supporters, Moritz compared it to “war triage, [they] have to choose a path to focus on.” Moritz expressed her passion about helping these parents, but claimed she and her team initially need to focus on the patients and provide them the required care.

Moritz ended the session on an optimistic note.

“New technologies plus collaboration equals hope”, she said.