I spend a lot of time talking about the beautiful side of death. Working in hospice has allowed me an opportunity to see death in a way that many people don’t. While I cannot remove the feelings of loss associated with death, I do get to participate in helping to make the last days, hours and breaths gentle and yes, even beautiful. I find myself sharing stories of my patients experiences, which bring tears to the eyes of almost everyone who hears them. I refer to the death as a soft landing, which is my ultimate goal. To me, that means reducing any symptoms, like pain, agitation or distress. Once those are removed, the death can be beautiful, and those are the stories I tend to share.
It doesn’t always happen that way though and I think it is important to be honest and realistic about that as well. I have found that people count on the peaceful death, especially when hospice is involved, so when there are breathing changes or sounds coming from the person dying, it can be unsettling. The “death rattle”, a phrase I always cringe to hear, should just be referred to as Audible Respiratory Secretions, which is exactly what it is. We feel the sound of it bothers us more than them, especially when the patient is unconscious. But what a person is experiencing when unconscious can be a mystery. The sound is awful, let’s be honest, but it can be relieved, at least mostly, simply by repositioning them on their side, and sometimes with medications if needed. Once I explain it, there is relief, especially when they realize it isn’t as troublesome to the one experiencing it. But if your hospice team doesn’t tell you that, it could be really difficult to hear, and I get that.
Your hospice team will do their best to come to you prepared for whatever might happen, and that includes struggles and discomfort just moments before last breaths are taken. I want people to know that we aren’t God, and we don’t pretend to be. And while we want your loved one to have the most peaceful death, that can’t be promised. Breathing changes can be scary and sometimes the facial expressions can be frightening. How we die is unpredictable, and we know that going in. I have found that when I am honest with the families about what might happen, they are taken a little less by surprise. And usually, there are very few scary moments, but if and when they happen, they feel confident their team will react quickly to relieve them. Honesty is key, death isn’t always beautiful and knowing that ahead of time can alleviate some of the surprises that might occur.
One of the really cool things that I have experienced since writing my blog is the way people have been responding. It seems to inspire them to share their own stories and for the most part being incredibly thankful for their hospice team. I love the idea that we are creating a community of complete strangers who are gathering together to talk about death. I love the fact that I have created space for people to be honest, even when it might be something I don’t agree with or conflicts with someone else’s thoughts or beliefs. None of us are in a position to judge and everyone should feel safe sharing their own thoughts and feelings and posing questions that might be tough to answer. I have heard from some people who had a terrible experience with their hospice team, they didn’t feel supported, they were not prepared or educated about the dying process and therefore felt almost alone, and many felt afraid. My initial reaction to those comments was to delete them, because I don’t want people to think of hospice in that way. I don’t delete them, because their experience makes me want to try harder to ensure that doesn’t happen to anyone in my care. But things do happen, and it might not always be beautiful and we have to be honest about that. Having said that, and I can only speak for the team of people I work with, we do try to come prepared to respond to the best and worst case scenarios.
The dying process is not always beautiful. It can be hard, it can be stressful for everyone at the bedside, and it can be painful to watch. That is the worst-case scenario. But that is realistic and I think we need to be honest about that so that everyone is prepared one way or the other. The most important thing is for you to feel confident in the team of people caring for your loved one as they go through their process. Never be afraid to ask questions, or to share your expectations of how you see things happening. We do not pretend to know your loved one more than you do and your information and insight can help us to do a better job for you and for them. You absolutely have the right to speak up relative to the care of someone you love. We use all of our senses and the families sense of the patient to try and discern suffering, the best way we can.
I will continue to strive for a beautiful death and a soft and gentle landing for those in my care, and I will always be honest and upfront with those at the bedside, because they deserve that. Everyone deserves that.
xo
Gabby
Photo credit: My friend Andy King
