The fifty-four-year-old man across from me this week asked, “How will it happen?”
He was sitting beside his wife who had visible tears in her eyes. Her tears had formed a few moments before as I was explaining her husband was barely balancing on the tightrope between life and death. His body was tipping so far over to the death side while his mind was trying to find some way, any which way, to right his centre of gravity over the thin cord beneath his feet.
It would be unlikely I would be able to prescribe more chemotherapy for his metastatic colon cancer. He was simply too sick. He was almost too weak to eat. His liver was starting to fail him. His eyes and skin were yellowing. He was barely able to get from his bed to the bathroom and from the bathroom to his sitting chair in the living room at home. His blood work was demonstrating the beginnings of bodily shut down – a white blood cell count that might as well have been multiplying in concert with his cancer cells, a bilirubin and liver enzymes quickly clawing upward like a vine in springtime encircle its trellis, inflammatory markers exploding like fireworks to celebrate a cancer win.
I wanted to clarify his question, so I probed, “What do you mean?”
He asked again not adding a word, “How will it happen?”
I tried to qualify his question once more: “Are you asking me how you will die?”
My eyes registered a barely visible nod of acknowledgment from him.
I am always surprised by this question: How will it happen? Perhaps surprised is the wrong word; maybe a better word is uncomfortable. I am always uncomfortable when I am asked this question.
It is a commonly asked question in my clinic rooms. One would think over the years I would acclimatize to it, but nope! It is still a hard one for me to answer. It has such raw emotion attached to it.
When asked this time, like many times before, my brain runs through a split-second internal checklist:
• Which cancer is this?
• Where is the patients’ metastatic disease?
• What are the blood count numbers?
• Where are we at with treatment options?
• Who am I talking to and who is with this person?
• Where are they living and are there people in the house that might need special attention with a pending death?
• Will there be potential excessive trauma when death decides to show up? If so, can we mitigate this?
• How much does the person asking the question want to know?
• How can I best explain the truth in that room, as I understand it to be, in that moment?
If I am uncomfortable in such a situation, I can guess my patient and their loved ones are too. The courage it takes to come to a point in a cancer journey where you know death is just ahead and ask “how will it happen” is remarkable. It is this kind of courage that many do not know they have until they have it. It is very inspirational. It, however, also causes me angst.
My discomfort with this question is from not knowing. I want to be clear here: I am completely fine with not knowing things. In fact, the more I think I know, the more I realize how much I don’t know. Coincidentally, I was having a conversation with a junior and senior colleague Thursday this week about our knowing, and lack thereof. My junior colleague who has been in practice only two years inquired if there was anything that gets easier as a medical oncologist with more years of experience. My senior colleague, by about four years, said a resounding “NO”! I chimed in, stating that I am much more comfortable with not knowing things fourteen years in. In the words of a former mentor of mine, “you don’t know what you don’t know until you know what you know.” I find this refreshing.
And yet, I want to be able to do my best for my patients. I don’t want to be wrong for them. I don’t want to tell them something about their death and how it might happen, and it turn out to be false. I don’t want to jeopardize the trust they have in me. They are looking for serious answers. I want to have the answers for them, but I know I sometimes will not. “How will it happen” is such an unfair question to ask and yet it is so necessary for many patients to ask it. I understand this.
This week, this question caused my patients’ wife so much anxiety she had to remove herself from the situation. As soon as the question was out of her husbands’ mouth, she looked at him, released a sound from her mouth sounding like a painful mix of a sigh and a gasp, and closed both of her eyes releasing her tears down her cheeks. She then stood up briskly and exited the room. I did not have the same liberty. I had to answer the question.
Not knowing if I should continue or give her a few moments to collect herself before she might return, I looked at my patient. Without me having to say a word, he said, “It’s okay, she doesn’t want to know.”
“I don’t know the answer to your question,” I started.
His eyes showed understanding. I went on to tell him there are any number of ways he might die. With his cancer type and with the fact that his liver was full of disease, I said it was likely he will die of liver failure. I told him if this were the case, he would continue to get more yellow, more lethargic, and eventually not be able to stay awake. He would go into a liver coma and might not realize it. There is sometimes confusion while in this state. It is often more difficult for friends and family to witness than for the patient to go through.
There are, of course, other ways he could die, I explained. Some of the other ways are a consequence of liver failure, some not:
• He could have a major bleed. His main tumour was still in his colon and he was having intermittent bleeding with bowel movements. A catastrophic bleed was not out of the question. Such a bleed could be very scary if the bleeding causes vomiting or a large bowel movement which can sometimes happen. Bleeding could also be exacerbated by his liver failure. The liver makes blood clotting proteins and if the liver is not functioning adequately, there is a chance clotting does not occur sufficiently enough to halt problematic bleeding.
• He could develop a blood clot which might impede the ability of his lungs or heart to function. Blood clots are common in cancer patients as disease progresses and can be provoked by a decreased ability to move the body as energy wanes. He was at higher risk of this now.
• He could just get weaker and weaker with his muscles wasting away until not even his heart could beat one more beat.
• His bowel could obstruct and causing a perforation, thereby resulting in an infection that would not respond to antibiotics.
I told him all of this while he sat there in silence watching me.
I asked him if it was possible for him to stay at home to die if this was his wish. I asked about his three children and if he thought he wanted to die at home where they might find him. Did he hope his family could be part of his death? He told me no, he did not want that. He did not want his kids to see him die. I reassured him that was okay and we could give him information on hospices where he could spend the days leading up to his last breaths.
Before I stopped talking, I told him again, I do not know the answer to his question. These would be my best educated guesses, but the answer will only come with time. He said he understood. He looked so devastated in those moments. It was a very sad thing to see – this man in the prime of his life, with a family at home waiting for him, having just heard about all the ways he might die with his cancer. There is no other way to describe it than to say he looked empty, defeated.
As I walked out of the room he said, “Thank you Dr. Spratlin”. I replied, “You’re welcome.” In my “you’re welcome” I hope he also heard “I’m sorry”. I’m sorry we couldn’t do more to treat your cancer. I’m sorry your cancer is so aggressive. I’m sorry you won’t see your kids grow up. I’m sorry you are suffering. I’m sorry I don’t know how it will happen because you really seem to want to know.
Author notes:
Garth Brooks has a song called “The Dance”. I am not a huge country music fan but I do love me a little Garth Brooks, and as a quick aside, Mr. Brooks sold out an entire stadium in my hometown this week in less than forty-five minutes. Sixty-one thousand tickets gone in a flash. I was not one of the lucky ones that scored some of those tickets.
Anyway, there’s a verse in his song which my brain remembers most often when a patient asks me their rendition of “how will it happen?”:
“And now, I’m glad I didn’t know
The way it all would end, the way it all would go
Our lives are better left to chance
I could have missed the pain, but I’da had to miss
The dance.”
I do not know how any one of my patients is going to die. I can tell them what a typical or normal death path would be based on the cancer they have and their recent disease trajectory. But in the end, death comes in so many shapes and sizes. I believe death is often predictable and yet surprising, expected yet a shock. Death is a living paradox – it is the only certainty in life.
As I’ve reflected on this patient encounter over the week, I’ve thought about how I don’t think I want to know how it all will end for me. Interestingly, I have also thought about many of the things I didn’t anticipate ending or want to end in my life, most notably my ten-year long marriage, and several years later, another couple-year long relationship. Would I have chosen to open myself up to the pain of these relationship losses if I knew they were coming? I’m not so sure I would have.
So today, as I write this, I am grateful the blueprints of life only reveal little parts of itself at a time. If not for this blessing, perhaps I would have chosen to avoid the heartbreak that was sure to come for me when my relationships failed. I might have missed my wedding day, a day I will always remember fondly with creosote damaging my dress during the photo-shoot on the train bridge. I might have missed knowing true love for the first time when my son was born, and then again three years later, when my daughter came bounding into the world. I might have missed the visual spectacle of a helicopter flight over the Grand Canyon to celebrate my birthday a few years ago. I might have missed getting to know my true strength and resiliency, and the knowing that I now have, and that which I have been able to model for my children, that when I get knocked down, there is always, always a way for me grow in love and understanding, and to face the world with a little more grit and grace than I knew I had.
I don’t know how it will happen, but I know it will. I thank my patients for teaching me not knowing IS knowing.
I am curious to know from you reader, if you had the choice, would you want to know how it will end for you? Also, what lessons have your unknowns taught you?
