Yesterday I had the opportunity to participate on a panel with two other moms. All three of us lost a child in the last year and the panel was part of a two day course at UCSF for medical providers on end of life issues. As the day approached, I was really questioning my decision to do this and kind of dreading it. But I am impressed that these health care providers want to hear from families. There were about 50 medical people taking the course, mostly nurses. Each of the three moms on the panel recognized one or two people who had worked with our kids.
I'm not going to lie. That was a heavy 90 minutes.
I think there were times when everyone in the room was crying. We discussed the end of life issues involving out own children and what the staff did right or wrong what could have been done better . They want to get things right, even when they can't fix the medical issues.
Though it wasn't specifically applicable to what actually happened at the end of Maggie's life, I took advantage of the opportunity to address some of the disability bias she had experienced in the medical world at other times she was in medical peril. I felt I owed that to Maggie and to her disabled peers. I cautioned the audience to treat their disabled patients with the same respect as the non disabled and to make medical decisions solely on medical grounds, not on unrelated disabilities a patient might have.
I told them about the surgeon refusing to do a relatively simple procedure on Maggie and then saying right in front of Maggie, "You didn't expect her to live forever, did you?*" I told them about doctors asking me how much intervention I wanted for her for a given malady that required nothing more than simple antibiotics. I told them about reminding some doctors they would never ask these questions if I brought in one of my sons with the exact same symptoms. I told them that the subject of a DNR (do not resuscitate) is broached far sooner with a disabled patient than their non disabled peers. I also told them that while "quality of life" is a real issue for medical personnel to consider in some cases, that it is open to judgement and bias and is a frightening slippery slope for the disabled and their families. I told them that many of the parents of Maggie's peers had been told to institutionalize their children because they would be vegetables. (None did and their children are thriving.) I told them to be aware of the bias against the disabled that is so prevalent in society and especially in the medical world. I told them children and families can adapt to anything - we are proof of that - and that they have to live the lives they are given in the best way they can. The medical world can and should help that to happen, not sit in judgement about the quality of those lives.
I didn't plan on saying any of that. I felt like Maggie was sitting on my shoulder saying, "mom, don't forget this and this, and what about that." And when it was over I was glad I participated and received a lot of positive feedback from the audience.
Of course those willing to take a two day class on this topic probably are the last 50 people who needed to hear it, but I was glad I got to say those things anyway.
All of the examples I gave really happened to Maggie in her life, but did not happen in her final days. There was no question about how that was handled and I told them that too. The circumstances of Maggie's final days were different from those of the children of the other two panelists. It is likely that every single one is different, which makes it that much more difficult for the professionals to find right answers. What works for one family in one situation might not work at all for another. Still each of the three of us believed that the personnel helped to make the worst days of our lives more bearable.
* this was in 2011. We went to another doctor who performed the simple procedure, fixed the problem and allowed Maggie to enjoy the healthiest two years of her life. In fact she never spent another night in the hospital after that procedure until the day she died.