My Thoughts, My Journey, and End-of-Life Care

Many years ago, when I interviewed for a job as a Physician Assistant in an oncology office, the doctor asked me "why” I wanted to work in a difficult field such as oncology. My response was something I had thought about for years. Everybody deserved a "good death," the truth, and the right to make decisions. This went back to my being 16 when my mother died after unsuccessful cardiac surgery to replace her aortic and mitral valves. My last memory of my mother was in the ICU, intubated (with a breathing tube), and more machines than I ever could have imagined hooked up to her. Thus my journey began. She died six hours later without being resuscitated. Nature, and my father, allowed her to die. And for that, I will be forever grateful.

Back in the early '70s, we did not discuss death. My mother died, and that was it. I was a motherless teenager, but nobody talked about it. She died, I returned to school, people whispered around me, and life continued. There was no therapy; everything was just swept under the rug.

Fast forward to Elizabeth Kubler Ross, and death became a "hot topic." We can talk about it now. We can discuss what we want to be done if there is no hope or cure. My years as a PA in oncology included many sleepless nights worrying about my patients and how to talk with them. I was very fortunate as I worked with an oncologist who believed in "hope for the best, expect the worst." When a patient was diagnosed with stage 4 cancer (metastatic with no hope for cure), we talked with them about the journey, about being prepared, and understanding that no matter how hard you "fought," sometimes cancer was bigger than everyone. All we can do is accept it and prepare. Talk with our loved ones, accept comfort care, and hospice care, which helps people live without pain (and be able to control it), talk to our loved ones about dying and choose how and hopefully where and with whom to die.

Over the summer, I got involved with a new client, a lovely woman in her mid-seventies with stage 4 metastatic cancer. As sick as she was, she was determined she would not die. I tried harder than I ever had to explain to her that we don't always have a choice and that she could have a chance to die comfortably at home with friends and family with her. And no matter what I said (nor what her doctor or her loved ones told her), she refused and wanted to "keep fighting." As I write this, she is currently being intubated, and I can't help but feel as if I failed her. Both her POA (power of attorney) and I are devastated, as she didn't have to die this way, but she will. She is now intubated, and at some point, the decision will be made (not by me) to "unplug her," and we will all mourn and talk about "what if." I had promised her she wouldn't die alone, and she won't. Instead, she will die in the ICU hooked up to all the machines, which is not peaceful. I had it all arranged to bring her home to pass without being hooked up to any lines or tubes. And I failed. To all those who care(d) about her (including me, being her advocate for almost seven months), I have learned that despite her being a curmudgeon and cantankerous, I grew to care for her. We will always wonder, "What else could we have done." And with her, probably nothing.

We still have a long ways to go in discussing and dealing with end-of-life care. I hope it happens soon because it is too difficult for the loved ones left behind.