A Mother's Gift

As I was growing up, my mother frequently talked about the natural occurrence of death and her confusion as to why people were so afraid of it. Death was an inevitable event that would happen to everyone when it was “time,” she would say. As a child, I very much disliked this discussion; I didn't want to imagine my parents dying, so I would often ask her to stop talking about it. On the contrary, this request would only encourage her further to make sure we understood that death was nothing to fear and needed to be accepted as a part of life, and, therefore, that it should be discussed openly.

When my healthy mom died from complications after an ischemic stroke, though horribly shocking and devastating to me and my family, I knew that she would not be afraid of death. I knew what her wishes would be and her definition of “quality of life;” she had always made her thoughts clear to us. Her ability to express her beliefs was the ultimate gift to me for years to come, after the harrowing process of her devastating stroke full of complications, questions and uncertainties, confusion and despair.

My family and I had to answer many difficult questions due to my mother's sudden, complex, and severe situation. Should we do the surgical procedure that had a 10% chance of complications and could allow her to have function again if successful? “Of course!” I remember answering without hesitation, as I spoke for my emotionally paralyzed family. I absolutely knew that would be my mother's answer if she could speak. When she became that 10% and terrible complications occurred, we were asked whether we wanted them to “do everything” as they were actively resuscitating her. To be honest, I don't remember their actual words as they asked this question. I just knew that they were “coding” her at that very moment, which put me into complete shock and disbelief and into survival mode, trying to comprehend how this could be possible and how this could be happening to my healthy, 59-year-old, vibrant mother.

For the days to come, while my mother remained comatose despite “doing everything,” my family and I struggled with all the unanswered questions. Will she recover? If so, how long before we see progress? How bad could she be? What are her chances? No one gave us answers—no statistics, no reliable prognosis from any of the many specialists. This was in 1997 when palliative medicine was not so available. I was a family medicine resident at the time, and I had no knowledge of palliative medicine myself. I felt alone, with no guidance. What I did have was a feeling that my mother's soul was already gone. Her vitals were stable and a ventilator was keeping her breathing, but I just knew she was not with us any longer. Still, I didn't know what to do. I prayed for clarity.

The reality of her condition started to settle in. Reviewing her terrible head CT scan again with the radiologist, seeing no progress in responsiveness, we finally gave the ok to withdraw the ventilator. We expected her to die quickly. We agonized over the decision. No one warned us that it might take days before she would finally die. When she didn't die right away, they asked us if we wanted to stop IV fluids. That, I remember, was another excruciating decision. At that time, before being trained in palliative medicine, I felt that we were starving her, and now we were responsible for stopping any last possible chance of recovery. Any chance of a miracle was going to be extinguished by our decision to stop hydrating her. We, in the end, would be the ones killing her, I thought. It was a terrible feeling, but it somehow seemed to be the right thing to do. It wouldn't be until 10 years later, while training to be a palliative medicine specialist and with the help of my mentor, that I would finally rid myself of that last bit of smoldering guilt.

My family and I decided to “stop everything” and allow my mom to die naturally. It took days. Though I often would look back and wonder what might have happened if we had continued treatment and kept my mother alive longer, I had no regrets about any of the decisions. I knew with all my heart she would have wanted them to do the brain procedure to open the middle cerebral artery even if there was a 10% chance of serious complication. She would never have wanted to be completely dependent on others if there was a chance of being independent again. When everything continued to go wrong, I knew she wouldn't want to be kept alive without a chance for a good recovery.

The whole process was agonizing for me and my family—not knowing if she would recover, then continuing to hope she could improve despite all evidence to the contrary. How I thought she could improve, I don't know. When you love someone, you never stop hoping for the agony to disappear and a miracle to happen. There comes a time, though, when decisions need to be made, and one must face a terrible reality. I'm grateful that once we thought she likely would not improve much, if at all, my family was clear on what to do.

My mother was full of life, independent, and healthy prior to her stroke. She spoke about her appreciation for her life and her health constantly. She lived a big life, for sure, and she had no fear of death. My mother had a very strong faith in God and a clear understanding that we will all die one day. Though I didn't like hearing her say this as a child, I so appreciate it now, as an adult who lost her mother too soon. Her words bring me comfort now. I know we did what she wanted us to do. I know she is in a better place and has no regrets. I know that she is fine; we are too, though we miss her physical presence.

Thanks to my mother I am not afraid of death, and I'm not afraid to talk about it. It is clearly what influenced me to follow a career in hospice and palliative medicine. The experience of my mother's death gives me firsthand knowledge of the pain and suffering a family goes through when discussing and deciding on goals of care for a loved one in critical condition. My own personal process has given me the patience and understanding that is necessary in helping families endure their own process.

My mother gave me the gift of a healthy philosophy of life and of death: live life fully, live it well, realize we all die, accept it, get over it, talk about it, and, when that time comes, allow for it. Speak of it without fear and be open about it with the ones you love. That is the best gift we can leave for those who love us, for they must survive with the loss, and they need that gift to continue to live on. My mission now, with my chosen specialty, is to try to help others spread that gift around.