“It is not enough to wish, dream, hope. Even children know this. We must set sail into the sea of uncertainty. We must meet fear face-to-face.” ~Veronika Tugaleva
Since our family lost Casey, we have all been so grateful for the outpouring of love, support, and empathy. So often we have heard the expression that the death of a child must “be a parent’s worst nightmare”.
I would tend to agree that this experience is right up there near the top of my list of life’s most painful possibilities. However, I would not necessarily agree that it rates number one.
I know, I know. This sounds awful. How could I infer such a thing? Take a breath, suspend your judgment for a moment, and let me explain.
Casey died tragically and suddenly in a violent car accident. Rick and I have opted not to know the details of the actual injuries that took Casey’s life. From my 20+ years of experience in the field of nursing, however, I can tell you that the mechanism of this accident was such that if he had lived, the odds are great that the decisions related to end of life care would have fallen on his closest next of kin; in this case, his parents.
Anyone who knew Casey can only guess what he might or might not have wanted if this had been the outcome of his accident.
The Casey Dalton I knew was fun loving much of the time. Vibrant and athletic, he never sat still. He did have a short fuse, and when it burned down at the end of it you would encounter an explosion of pacing, arms flailing, rapidly fired, angry roars and chatters, soon followed by a grouch who hid under his hoodie, shuffled his feet, and mumbled irately under his breath. He hated being dormant and without an industrious task, physical activity at hand, or some type of auditory or visual entertainment, he was easily bored. Most often he was concerned about caring for others, and with that care he expressed an attitude of, “Don’t worry about me. It’s all good.” He could be very modest and private at times. This was a young man who was proud to be extremely independent and determined. He could also be a downright, stubborn pain-in-my-you-know-what. And as our whole family did, I loved every smile, every smirk, and every quirk of this special guy.
So, knowing all of this…I am forced to ask:
What would he have wanted had he lived through his accident? What path would he have chosen with a body kept alive, but badly broken, and potentially beyond repair?
Would his desire to be active and independent driven his decision, and therefore he would never have wanted to live bedbound and dependent on others for care? Would his biggest fear have been being a burden to others?
Or…would his determination and stubborn nature lead him to opt for a choice to hold on as long as possible, in the hopes that some type of miraculous recovery might occur?
Having to make this decision for one of our children, or for anyone that I love, amidst the trauma of a crisis, having no idea how to truly honor their autonomy and most sacred wishes…for me, that would top the list of the worst nightmare. For in this decision there could be no true closure; no resolve. Had the outcome of Casey’s accident been different, the future would have held an eternal, unanswered question for all involved:
Was this what Casey would have wished for himself?
Such a situation might have had a significantly negative impact on our big, blended, loving family and all of its vast extensions. It would have put in our faces the realities of the laws of our country related to genetics, versus what we hold most dear in our personal world, being that a family is a circle of people who love you.
We would have been challenged with the differences in our individual experiences with Casey, as well as our own personal biases, wrapped within the dynamics we share in relationships with each other. All of that complexity would have weighed heavily upon us amidst horrific trauma and sadness. We probably would have faced a greater risk of being torn apart, instead of being drawn together. Casey’s death has been a horrendous blow to this family. As have said before we are blessed in that we have become stronger as a result.
We are not so special though. We are certainly not unique in our grief, and we are not alone in our experience of loss. Why, you ask?
Because the facts are clear and the numbers don’t lie.
The current death rate is 100%.
It always has been.
It always will be.
No one gets out alive. The only variables are when and how.
In the wake of the courageously public death of Brittany Maynard on Saturday, the “Death with Dignity” discussion has been placed, at the very least, in the forefront of American culture…but it is probably safe to say worldwide. I am not inferring what is morally right, or what you should or should not believe about Ms. Maynard’s decision. What is most important, I feel, is the topic, the facts that relate to it, the importance of facing these facts, and then cultivating a culture where this discussion is the norm; one where individuals feel compelled to put their wishes in writing, whatever they may be.
If you are over 18 this means you.
If life circumstances find you in such a condition, be it temporary or permanent, from an accident or a disease process, of being unable to make and/or communicate healthcare decisions for yourself, the law automatically defers these decisions to those who are considered your next of kin if you don’t have anything to the contrary available in writing. Often times this may end up not being the person who is closest to you, but could end up being the person who is the easiest to reach, or to whom you are most closely connected genetically or legally. This could be your soon-to-be-ex-spouse who is feeling less than happy about your existence to begin with, or your eccentric brother from Walla Walla, Washington who has not spoken to you more than a handful of times since childhood. The laws vary state to state…it could even become more complex if you are in another country.
If you do not have your wishes put into writing, even for temporary situations, and then distribute them as thoughtfully and efficiently as possible to make them accessible, your day to day care during whatever time you are incapable of making decisions, will probably be managed by strangers in a hospital setting. They will be guided only by input by your traumatized loved ones, who may not be allowed to make the legal decisions, each facing their own personal struggles amidst that crisis. Final decisions on all aspects of your care will fall on the shoulders of the person, or people, determined by law, and only those willing to take on this responsibility and sign on the dotted line will have the final say. Everyone involved will only be able to guess what it really is that you want.
Is this a plan you are willing to accept for yourself in your most vulnerable hour?
Do you want your fate to be in the hands of who the law says owns that right?
And equally as important, is this a burden that you are willing to impose on others without their permission?
From a nursing perspective, it’s not how I prefer to give care. It is always my intention to honor my patients. How can I do this if I have no idea what it is that they want? Giving the most basic example, my best guess of positioning you in bed for comfort may be the way in which you feel least comfortable.
If it were me in the bed, to tuck my bedding in tight at the foot, when in fact, I prefer to sleep with my feet uncovered, would be a problem. If I were the patient, such a thing would piss me off and stress me out on a good day and in my own bed. Multiply that stress by God-only- knows-how-much, when I am struggling with trauma and pain in a strange place, and the best intentions of a caregiver have now led to imposing suffering.
Are you picking up the importance of what I am laying down here?
It is so important for you to understand that those who love you will have a lot easier time following your concrete, written wishes than trying to guess what it is that you might want, only able to rely on a hope that they are right if the sh*t hits the fan.
As a wise and seasoned hospice nurse I know says, “Hope is not a plan.”
So, as hard as it is, I am challenging you to start thinking about this topic and what it means to you.
Please start discussing this issue with your family and friends. It’s not an easy task, I know.
But remember, the death rate is 100% and it’s not going to go away.
Chew on it for a bit and contemplate some of the questions that need to be answered:
Who would you want making these decision for you if you could not? Who do you feel you can trust most to honor your choices? Does this person/people feel they could, or would be willing to manage this responsibility?
In a future post I will offer some information on how to go about forming a written “When the Sh*t Hits the Fan Plan” and I’ll even send you to a place where your wishes can be granted.
Until then, please remember…
Love always wins…and so it goes.