I involuntarily became a part of the brain tumor community after my husband Patrick’s deadly glioblastoma diagnosis in 9/2014. About a year after he died in 7/2015, I became an advocate and began working to advance progress toward better treatments and ultimately a cure by pushing for more research dollars and meeting with my congressional representatives to push public policy aligned with that goal. The most meaningful part of the work I am doing has been the relationships I have built with other advocates who come from all areas of the brain tumor space: patients, care partners, scientists, physicians, and others impacted by the life-changing and often life-ending diagnosis.
I have learned so much by interacting with those one the front lines of the disease, and the lessons extent far beyond the brain tumor landscape. One of the most controversial topics that I often see people bravely confronting is end of life and one’s wishes surrounding the same. I see courageous patients posting their own advanced directives on Twitter to the #BTSM (brain tumor social media) community to educate others on what these look like. I listen to conversations being had about quality of life versus extending life merely for the sake of quantity of life. I watch people confronted with the very same illness that my sweet Patrick was who are navigating the progression of the disease with such grace and dignity that I am in awe.
In our highly death-phobic society, it seems that those tough conversations are rarely had until one is faced with mortality itself; but even then, it often feels like too much to face. In the most tragic circumstances of all, those discussions are never had until it is too late.
My experience with Patrick’s illness and death was, unfortunately, just such a tragedy. Before Patrick suffered the first grand mal seizure that put him in the ICU and ultimately led to his diagnosis, he was the picture of health. At age 54, Patrick had not had an alcoholic drink in over 25 years. He quit smoking almost two decades earlier. He rarely, if ever, went to the doctor, not just because he was stubborn but because he really had no need to. He exercised regularly and his diet consisted primarily of high quality protein, cruciferous vegetables, and fruit in limited quantities. He looked easily ten years younger than he was – the man had six-pack abs, for crying out loud. He worked in tech sales at a San Francisco start-up company and regularly traveled the world. I was many years his junior, so for similar “I’m-healthy-so-let’s-not-talk-about-sad-stuff” reasons, we never had a conversation about what we wanted in the event something went terribly wrong for either of us. I had learned a couple of months before his first seizure that Patrick did not have a will or trust set up. As a lawyer, this seemed extremely irresponsible given the fact that he was previously married with two young adult children, and I had urged him to get this done, but that was as far as our discussions went and he had not heeded my advice.
We had no reason to suspect that Patrick would go from a vibrant, independent provider to a person who required 24/7 care overnight. But that’s exactly what happened, and we were not ready when it did.
When Patrick first went to the hospital, we did not discuss the potential serious consequences of a dire diagnosis because we were told that he did not have one. The well-intentioned doctors were wrong, and within weeks Patrick underwent a craniotomy and received the diagnosis of GBM, a Grade IV tumor with a median survival rate of 15 months. By that time, I was so shocked, confused, devastated, and otherwise befuddled that the idea of having a conversation about Patrick’s wants and needs for his future given the circumstances was almost too painful to broach. It was not until the fourth hospital Patrick visited in the first two months that the first doctor even asked us whether he had an advanced medical directive, and suggested we get one in place, which we did.
I know that I was a large part of the reason we did not have clear and unemotional dialogue about the realities we were facing and what Patrick wanted. I had the common but extremely naïve belief that having those conversations meant that we were “giving up” on Patrick’s treatment, and resigning ourselves to the fact that he would not make it. I remember one time Patrick looked at me with tears in his eyes and said “I want you to find a nice man, Lisa. You’re going to have to date again someday…” Instead of responding with kindness and empathy, I shut down the conversation and sternly cautioned him to not think that way because he was going to make it. He quickly backed off, and never brought it up again.
In hindsight, this interaction was one of the biggest regrets I still have from that time. I wonder how different things might have been if I had been willing to hear him. I wonder if he would have been in less emotional pain if I had allowed him to talk about the fact that he was likely going to die. I wonder if my blatant refusal to accept reality made it harder for him to accept his own death.
It isn’t just talking about dying, either. It’s also talking about what happens afterwards, to the ones left behind. If we had, I wonder if I would have suffered less once he was gone. I was constantly walking around in anguish wondering how Patrick would feel about how I was trying to move forward and live my life. How would he feel about me leaving the home we shared? When should I stop wearing my wedding ring? What would he think if I ever decided to date again? I didn’t know how to honor our love and be okay at the same time. I didn’t know, because I didn’t ask when I had the chance.
Our failure to have those important conversations put an extraordinary amount of pressure on me has Patrick’s primary care partner. I arranged for him to see a lawyer to set his affairs in order, but because of complicated dynamics with Patrick’s family, I sent a friend with him to the appointment to avoid the appearance of untoward influence. This resulted in his wishes being incorrectly outlined in the documents, causing additional conflict among the family for almost a year after he died. I second-guessed decisions about his medical treatment, which by the end I was completely in charge of as his medical proxy. The constant pressure of Patrick’s illness and feeling responsible for my failure to “save him” was a huge contributing factor to my diagnosis with PTSD months after his death.
Waiting until the end to talk about the end poses the unique risk that your loved one won’t be able to meaningfully participate in those conversations. In Patrick’s case, his tumor caused him to suffer from expressive aphasia, which is the partial loss of ability to produce language, in his case due to his seizures. As a result, communication was often difficult and it was not always clear that his words lined up with what he wanted to say. This worsened with his disease progression, and I often think about how the legal issues might have been averted if we had done this early on.
By avoiding tough conversations, you can also open the door to criticism and skepticism from others who question whether your loved one was in their “right mind” when decisions were made. Although we had been planning to get married long before Patrick was ever sick, Patrick did not discuss this with his family for fear of what they would think. We decided to get married towards the end of his life when we realized we did not have much time left. I remember getting a call from a social worker at Patrick’s medical facility after we had decided to get married. She told me that Patrick’s sister was trying to get the doctor to make a statement that Patrick did not have the legal mental capacity to agree to marry me. His doctor made it clear that although his ability to express himself might be compromised, he was still able to make important decisions. It was a painful and unnecessary diversion for what was otherwise a beautiful and special day.
There is a fine line between having faith and hope for a positive outcome and being completely blind to reality. Hope and delusion can be two sides of the same coin. I was well-intentioned in my denial. I wanted to “keep the faith.” I did not want either of us to give up. Nonetheless, our failure to plan for the worst while hoping for the best made everything so much harder than it needed to be.
The truth is, none of us is getting out of here alive. It feels like we are all walking around avoiding having these difficult discussions with others, or even acknowledging how we feel about this ourselves, because we are afraid talking about it will some how hasten death’s arrival. The kindest gift you can give your loved ones is clarity about what you want. Remove the guesswork. Grief can make even the best people angry and spiteful, and behave in ways you would never imagine. Do not let your fear of dying give anyone room to question your wishes.
Lisa O'Leary is a lawyer, cat mom, widow, sports enthusiast, truth seeker, soul searcher, meditator, and consciousness practitioner who is actively engaged in quieting down the mind to allow the song to play.