The only real certainty about death is that we are all going to die. We are certain of that. But how and when we die is a question no one can truly answer. We could be given a diagnosis that is serious, suggesting a certain time frame we might die, but even that is not guaranteed. To be admitted to hospice you will have had to receive a diagnosis with six months or less to live and while most patients we see, die within those six months, some actually live months or years longer than expected.
Uncertainty hovers over someone who has been recently diagnosed. The questions about treatment and the quality of life they might have afterward, can determine whether they choose to do that, do nothing, or go onto hospice. While a treatment might prolong the inevitable, it could also bring months of sickness and never leaving the bed. This decision, while yours, affects those who love you and that too makes this decision difficult to make.
When my mother was diagnosed with cancer the second time, she was told she had a year to live. I sat at her bedside as she covered her head with the blankets succumbing to her diagnosis and limited timeframe. I asked about doing more treatment, and she told me there would be no more treatment and that she was just going to die. I suggested we do things or go places to make her last year memorable and special… she told me I see things through rose-colored glasses. At that time I wanted to pull her out of the bed and force her to do what I would do. My mother died almost to the day, exactly one year after that.
Choice is sometimes a thing that is very difficult to accept, especially when it isn’t yours to make. I understand now, that she chose not to pursue further treatment, and she chose to cover herself with blankets and die alone in her bed. I didn’t understand then, what it meant to be given a life-limiting diagnosis and what that might feel like. I have since learned that she chose not to do treatment, because there was no certainty she would live longer or have a better quality of life. And while she chose to stay in bed, it was without the symptoms treatment might have burdened her with. The unknown makes the decision that much harder to make. Had I known then what I know now, I would have respected her choice and provided whatever care and support she might have allowed me. It felt like it was all about me, but the truth is, it was all about her and I didn’t understand or respect that then.
We are quite often asked “how much longer” from those at the bedside of a dying loved one, and while we can usually be certain it is hours to days, we cannot predict the actual time or date of their death. We have seen enough people take their last breaths so we do know what that looks like and many signs and symptoms can guide us to knowing their death is approaching quickly. There have been many times when we see certain signs that indicate minutes and we can call the family to the beside just in time to take their hand and say goodbye. But we cannot ever be truly certain of the when. There is a constant tension between our ability to provide reassurance and our inability to predict the future accurately.
A question we are often asked is what death feels like, or what it will look like for them specifically. Everyone goes through the dying experience uniquely, so there is not any one perfect answer. Most people want to know how they are going to die and we struggle to provide an answer that while it cannot be promised, can at the very least bring peace.
Adults tend to wait until their last days to ask the questions about what death might look like, and yet children have such honest and innocent curiosity about it very early on. Kids as young as 4 have asked me, “what does it feel like to die” and when it is their own parent dying, they want to know what they will experience; they need reassurance that they will not be in any pain. Because there is so much uncertainty relative to death and dying, the best thing we can do when someone asks the difficult questions, regardless of their age, is to answer as honestly as we possibly can, being clear that it is from our own perspective.
Whether you practice a faith that believes in an afterlife, think you may return as a cat, or that once you are gone, you are gone and that is it, you are allowed your own assumptions and opinions, no matter how radical and creative they might be. It is also helpful to ask that person what they think, what they want and how they would hope their process plays out. Sometimes we might not agree with their choices to stop medications and treatments, because we want them with us as long as we can. But this is their choice, and they deserve our support and respect. Perhaps it would benefit us all if we talked about death and dying a little more casually, sharing our own thoughts and curiosities about it all before a diagnosis is given. Maybe that would reduce some of the uncertainty.