Providing end-of-life care is a privilege that is hard to choose. It is to choose to go down into the dark with another person, down into the deepest mysteries of the human experience. It is to share in the most difficult journey of a person’s life, a journey from which only one of you will return.
A palliative diagnosis can mean that the person is sent from their home and everything they knew, to finish their journey among strangers. Sometimes this is a relief to those left behind. It is hard to watch someone die, and it is not part of the job description. It is far too mysterious, too intimate, too life-changing, too precious. It is a hard thing to choose.
But for those who can choose it, for those willing to learn how to apply the fentanyl patches and manage the morphine drips, to move a person hourly to prevent bed sores, to change their catheter bags. This is no added burden to an already heavy load, but an honor they wouldn’t miss. They see it as finishing well, a privilege they won’t share with a stranger. It brings much-needed closure to a relationship of support in some cases decades-long. It is their final act of love.
The decision to take on this last and most difficult work is not a selfless act. Those that have done it know that there are gifts to be received here that no one else can give, and lessons that must be learned that can be learned nowhere else.
At the end of life, the balance of power between the support person and the supported shifts. The people we support finally find the equality they’ve always deserved but have so rarely achieved, and more than equality. The person we support at the end of their life are learning a thing, doing a thing, that we do not know how to do, but some day must. We find ourselves the ones supported. We sit quietly by the hospital bed. We listen and we learn perhaps the most important thing a human has to learn: how to die well.
At the end of their lives, all of those careful systems that have been crafted to teach and support and control those in our care collapse. We are no longer concerned with behavioral support plans or age-appropriate activities or annual planning meetings. The person is finally, truly, at the centre. Their wishes and needs can no longer be paraphrased and ignored. Here at the end we learn what support really is, and we find that we are able to provide it, one human being to another.
This is where all our work comes to its final fruition. This is where all the labels drop away, and we meet one another simply as humans, sharing the joy and grief, the gratitude and regret that is the common lot of mortals at their common end.
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