I suddenly and unexpectedly lost my father on Father’s Day, 2004. I said goodbye to my mother on January 7, 2014. Their end-of-life experiences were quite different and a great deal of the difference was due to having meaningful conversations about end-of-life health care wishes.
My father died from an aortic aneurysm. Although my mother was certain that he died in the car on the way to the hospital, the emergency department team eventually found or generated a faint pulse, so he underwent a lengthy surgery and was sent to ICU. Our family was instructed to go home and get some rest because the next few hours would be crucial in determining whether or not he would pull through. We were told that they would not surgically “close him up” because he would need more surgeries, including a colostomy, if he survived. The surgeon was very honest about the strong likelihood that my father’s brain was damaged because his internal organs were clearly compromised due to lack of circulation. I had been home only an hour or so when I received a call to return to the hospital because my father “wasn’t doing well.”
In the years before this night, my father had told the family countless times that he wanted to be kept alive using any measures possible in an emergency. However, he wouldn’t engage in meaningful conversations about this; he would only make jokes about hooking him up to the washing machine if we thought it would work. He also, however, told us that he wouldn’t want to live long enough to be cared for due to senility or loss of autonomy. With these limited instructions posed only in a joking manner, all we knew was that dad wanted all life-saving measures implemented, and he only wanted to live if he could care for himself. Nothing was in writing and everything was left up to interpretation and speculation in the moment.
Because I lived closer to the hospital than did the rest of my family, I was the first to arrive and the only to experience my father’s passing. I stood by his side while a team of many performed CPR on him for what seemed like hours. I held his hand, with my face to his, my knees repeatedly going out from the frantic nature of the experience. Yet, as I looked at him, at some point, it seemed that he was somehow no longer my father, but simply a man who appeared to be dead (if they would only let him be).
I finally told myself that when he’d asked for everything possible to keep him alive, he certainly did not mean this seemingly unending pandemonium. I finally looked up at the closest nurse and choked out the words, “He’s not here.” She replied, “And there’s nothing to bring him back to.” At that, I asked them to stop their efforts. The team was able to make my father and the room presentable just before my mother and sister arrived. I was grateful that they did not have to experience those chaotic last moments, nor did they have to speak the dreaded word, “Stop.”
Almost ten years later, my mother passed away, peacefully, on hospice. Hospice made arrangements to have her defibrillator turned off so there were no shocks at the end of her life (something my mother feared greatly). On her last morning, she asked for her Bible, closed her eyes and gently drifted away. She had an advance directive and had made me her advocate. We spoke many times as her illness progressed. I knew what she wanted and I knew what she feared. Because of this, choosing palliative care and hospice was an easy decision. Hospice kept her symptoms under control which allowed for a most gentle passing. The hospice nurse and aide cared for her tenderly even after she died. Every aspect of her passing was different from my father’s death.
So with two parents, and two deaths, the difference between the two experiences cannot be measured. While my father joked about dying, we had no real conversations that could give us direction about what to do in an actual life-threatening event. Instead, we only had two pieces of information that, in the end, were in complete conflict with one another. The guilt and grief that followed my father’s death were immeasurable because I was put in a situation where I had to honor one of his requests and deny the other. There was no right answer, because there was no meaningful conversation. An actual advance care planning discussion would have guided us through likely scenarios, not leaving his loved ones with two, conflicting and therefore impossible-to-honor requests.
My mother’s death left only normal grieving in its wake. I love her and I miss her terribly, but I know that we made the correct choices in the end. Having her die free from pain in a quiet room, surrounded by family, completely void of emergent and chaotic activity, was the best anyone can hope for when realizing that you have to let a loved one go.
Because of these experiences, I beseech people to designate a patient advocate and have the conversation – not just a generic conversation, but a meaningful one. Meaningful conversations explore scenarios and likely events, but most of all, meaningful conversations communicate the values and goals that will guide a patient advocate with the confidence that they know both their loved one’s end-of-life wishes and the reason those wishes are important.
Providing loved ones with the confidence that they know your wishes in the confusing time of illness, accident or death can make all the difference in the world, not just for the person passing, but for those left behind to wonder if they made the right decisions. Having the conversation is the gift that erases those questions and allows for wishes to be honored and healthy grieving to normal heal the pain of loss.