The relationship between the hospice nurse and their patient is hard to define. It’s definitely not a friendship. It’s a professional relationship. And its range is significant.
On one end, there’s the 97-year-old in the last stages of Alzheimer’s disease, whose family you may never meet, but whose caregivers in those little facilities for the elderly are generally the salt of the earth. And yeah, from s***hole countries, just like myself (Ireland was considered a 3rd world country until the 1970s). I may never interact with my patient at all, because he or she is well beyond that by the time they come on hospice service. But I may have the opportunity to make them more comfortable, either with medication for symptoms, or with my gentle touch and words that they might hear, a hand on the forehead, some time at the bedside hoping that my loving energy and kind intentions somehow make a difference to the person in the bed who has had such a long, rich, and eventful life on this earth, and whose last days, however diminished, I am privileged to witness.
At the other end, there are the patients, particularly the younger ones, into whose lives I am welcomed and in whose final weeks and months I become enmeshed. These are the patients I find difficult to let go. They are the ones I check my work phone at 3am to make sure there have been no calls from the family, or worse, the late night ‘time of death’ email from another nurse.
When a patient on hospice dies, the family calls us and we send out a nurse to do what is termed the “Time of Death” visit: to confirm the absence of vital signs, note a time of death that will be recorded on the death certificate, call the mortuary, notify any doctors and all hospice staff involved in the case (automatically cancels any planned visits: you don’t want a hospice aide showing up at 7am to bathe a patient who died at 6). If the patient has had a recent fall, we have to call the county coroner, to confirm the death was not due to the fall. Most importantly, the nurse attending a death can give emotional support and solace to the grieving family.
Sometimes this is not called for. I have attended the death of patients in facilities who had no family present or close by, or (worse) no family at all; who lay in an anonymous room in a hospital bed with the covers drawn over their faces and a kindly but busy nurse somewhere down the corridor who could report to me how the death went down. Those are uniquely sad deaths to me. I try to spend some time with the person, wish them well on their journey, and let them know that there is someone here on earth who is keeping their recently vacated body company for a little while.
Then there are the patients I’m very connected to. Sometimes, I will have spent hundreds of hours in someone’s company before they die, having profound and memorable conversations about their lives, their impending deaths, and their feelings around facing the end of the life. I may have worked hard to manage their physical symptoms, rushing medications to them, talking them and their families through the cataclysmic changes that occur as the body shuts down. And yet when they die, I may not even be working. I may learn about it in a businesslike email the next morning, or on a Monday when I log in. Somehow, I have to manage my grief over these deaths. If I am the Time of Death nurse, I have to be efficient and productive, yet sensitive to the family’s grief. Sometimes there is chaos around a death, anger, disbelief; unresolved history comes barreling to the surface; family members show up and the dynamics are unpredictable. Sometimes the last hours were a real struggle and the family is in shock and trauma. I may have to help manage that.
And then, at a certain point, I leave. Because I have my next patient to visit, and then the one after. There have been times I have left a home after seeing a patient I was close with laid out in their beds with their loved ones around them, and I have sat in my car shaking and crying with grief. The family gets to spend the day and maybe days after moving through their grief. And so it should be: they have a lifetime of history with the person, I have weeks or months. But I have to move through it in a matter of minutes sometimes, so my next patient will not notice that I have been crying. I have to have somewhere to put my grief so I can deal with it later, after the rest of the day’s visits. Every patient deserves my undivided attention. It’s not fair to bring my feelings over one patient’s case into the next.
When I tell people I’m a hospice nurse, I sometimes get the response: “That must be a really depressing job. How do you do it?” Because I’m Irish, and was raised to minimize things, I usually shrug the question off with an answer about how much I love my work. And I do. But the truth is, it is heavy work. I realize just how heavy any time I come back after a vacation and feel the mantle of responsibility settle back on my shoulders. You have to have ways to put the burden down and walk away into the light of your own life, or you will burn out. I journal, I ride my bike, I go to the gym and burn it all off. I listen to music, sometimes obsessively to the same few songs that give me comfort as I drive between patients. And every Wednesday, I meet with my team for a 3-hour session where we process the deaths that happened that week, the new patients, tell their stories and unburden ourselves of the sadness and grief we carry. We also, make no mistake, tell funny stories and laugh a lot. Hospice humor: key survival tool!
At the end of the day, as long as I keep a reasonable work/life balance (hard to do with hospice oversubscribed and understaffed right now), the nourishment and fulfillment I get from my work outweighs the heaviness. But I never go off to work without a packet of Kleenex in my bag.
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