I fell off my bike the other night. When I leave my house, I immediately hit a small hill. Usually I have prepared by putting my bike in low gear as I end my ride, so when I roll out on the next one, the hill is easy. That night for some reason my bike was in too high a gear. I was also really tired after a bad night’s sleep and a tough day at work. As I started out with no momentum, I realized I just didn’t have the strength to power up that small hill. And I was clipped in. So as I struggled to simultaneously shift gears and get some pedalling action going, I saw the bike slow down as though I were riding through molasses and, also in slow motion, I failed to clip out and fell off sideways onto the road.
Some good road rash and a banged up knee. And ouch, some wounded pride, even though nobody saw me. But also the shock of falling and that sense of time slowing as you watch the inevitable unfold and are powerless to prevent or reverse it. It’s sort of comical, and yet also deeply jarring.
It got me thinking about - what else? - the dying process. I know, that’s what my ride was supposed to be clearing from my mind. But there’s just no accounting for hospice nurses...
A friend in Ireland had sent me a link that day to a British palliative care doctor giving a talk on how we in the West have become so afraid of death, and how we need to reclaim the wisdom of it. Her core message was powerful and I wholly agreed with it. But in describing her experiences of people dying, I felt she really sugarcoated it. To hear her describe death, you would think all dying folk just start sleeping more, slip into a peaceful coma, maybe have a bit of rattly breathing, take “some medication”, and then slide off into the Great Beyond.
There is a pervasive myth in our society of ‘the peaceful death.’ Curiously, I have found that this myth is in some ways as pervasive within hospice as without.
Everyone hopes for a peaceful death. As a hospice nurse, I feel the powerful draw to describe all deaths as peaceful. After all, what family member, absent from the deathbed of a loved one, wants to hear “well, they labored for three days to die and all the morphine in the world couldn’t really help them.”
When a patient dies on hospice, the nurse who attends the death sends out an email to the entire company of nearly 400 people announcing the patient’s name and basic details about the death: where it occurred, who was present. This is confidential information disseminated purely to prevent any team members from showing up unknowingly to care for a patient who just died.
It always amazes me what a high percentage of these emails contain the phrases “passed peacefully” or “expired peacefully.” The word “died” is rarely used, and usually “with family at the bedside” is appended. This latter is potentially a good thing. If true, it means the hospice nurse was able to do her job well, the death was expected, family were notified in time, and the dying person was surrounded by loved ones. Ideal death: check!
Sometimes, these terse emails tell a very different story. “No family present.” Or “Patient had no family or friends.” Or sometimes the brevity of the email speaks volumes to what the nurse is not saying.
I have been present at many, many peaceful deaths. I have also worked with very difficult, distressing deaths. Sometimes all the medication in the world cannot control the dying process so that those gathered at the bedside can feel confident their loved one is not suffering. Sometimes, the dying person looks or sounds like they are suffering but research and experience tell us it’s likely they are not - that they are in too deep of a coma state to feel or be aware of anything. But sometimes, it’s painfully clear to everyone that the dying person is partially or fully experiencing the labor to leave their bodies. It is hard work to come into this world and sometimes it is hard work to leave it.
I could write an entire book on the use of morphine for the dying. Suffice to say, it can be highly effective in the alleviation of three different symptoms of dying: pain, labored breathing, and excess secretions (the ‘death rattle,’ a term you will never hear a hospice worker use). This is why hospice doctors prescribe it and hospice nurses administer it so frequently, and sometimes in such high doses.
But in regards to the palliative care doctor’s sugarcoating of how people die, I just want to say this: every Wednesday afternoon, my hospice team holds their weekly meeting. Typically lasting 3-4 hours, it allows us among other things to process the deaths that happened during the previous week. Here, in the sanctity of our confidential windowless room (sort of like Las Vegas, only with fewer slot machines) we tell the stories of how our patients died. And regardless of the ‘passed peacefully’ wording of the time-of-death email, our stories tend towards the truth of how things actually went down.
Whether we were present at the actual death, or soon after as the time-of-death nurse, or only spoke with family members on the phone the next day, we get to process how it was for this person to leave the world. And let me tell you, we dispense with the sugarcoating. After all, part of the goal is to process our emotions; also to figure out whether we could have done things better, and if so, how. If the patient had difficulty breathing at the end, were we able to get an appropriate morphine dose on board? Did it help? Were we able to educate the family adequately on what was happening? If there was terminal agitation, did we recognize it in a timely way? (This particular end of life symptom can masquerade as numerous other things and be difficult to diagnose.) Were we able to effectively treat it? Again, could we help the family understand what was happening to their loved one? Did we help augment the patient’s care system? Were there special needs at this death, lessons to be learned? How would we do it over? We laugh, we cry, we support each other and give team members lots of snaps where they are due.
In short, when someone is dying, it can be a drawn-out process and for those sitting vigil, time can really slow down as they watch the inevitable unfold and are powerless to prevent or reverse it. Hey, sort of like falling off a bike! Except of course that I picked myself up and rode to the Alpine Dam and back by dinnertime. And by the time I got back I was much less absorbed with the dying process than I was with how to soothe road rash.
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