End of Life

I conducted my first Australian family meeting with end-of-life discussion on Friday. Prior to this trip, I considered myself fairly adept at conducting family discussions. However, attempting an end-of-life discussion with an indigenous patient & her family made me realize that I was way out of my league & have a great deal to learn about Aboriginal culture & will hardly scratch the surface during my few months here.

TG is a 32-year-old Aboriginal woman who is in the end-stages of bronchiectasis, a lung disease that has resulted from multiple recurrent lung infections over the course of her life. Many indigenous patients develop bronchiectasis in childhood from recurrent lung infections & the condition often progresses & worsens over time & eventually comes to resemble a condition much like cystic fibrosis, except these patients start off with genetically normal lungs that are damaged over time. Eventually, as is the case with TG, the heart is also damaged from years of pumping blood against sick lungs. TG has severe pulmonary hypertension & heart failure as a result of her condition.

TG was on the inpatient ID team when I arrived in Darwin completing a prolonged course of IV antibiotics for another lung infection. During that hospitalization, it became apparent to us that she would now be dependent on supplemental oxygen. It took a great deal of maneuvering on the part of the resident to discharge TG back to her remote village on supplemental oxygen. Not surprisingly, a few days later she returned to the hospital with another lung infection & difficulty breathing. TG is not a candidate for a lung transplant, which is the only measure that could prolong her life at this point. So, it's just a matter of time until she succumbs to one of these recurrent lung infections.

On Friday I felt that she was not improving despite our treatment & was working very hard to breathe, taking over 30 breaths a minute & tiring. I was worried that with the weekend coming, her condition would deteriorate & wanted to make sure she & her family were aware of this, her overall prognosis, & had a chance to discuss her goals of care & what she would want to happen should she no longer be able to breathe on her own. So, I scheduled a family meeting with TG, her family representatives, & the ALO (Aboriginal Liaison Officer).

TG's "auntie" was the head family representative at the meeting along with one of TG's cousins. There was complete silence while I was speaking with no obvious body language clues or other feedback from the family. Then, the family broke into a loud, heated discussion among themselves, speaking in their native language which even the ALO does not understand. Then, the auntie said that TG had enough & from then onwards we could only speak to her (without the ALO). Finally, the resident & I took the auntie to another room & finished the discussion. It was not entire clear to me what was understood, but she stated that she understood everything & would communicate what was said to TG & that she'd also had enough & did not want to hear anymore . . .