Many people that I meet have come to a crossroads where pursuit of a cure for disease intersects the reality that disease has progressed despite heroic efforts. It can be a frightening and sad place, or it can be the perfect convergence where modern medicine has failed and now the spiritual work can begin. While some people can never give up the fight to survive at all costs, others are able to turn from one direction to the other without too much trouble. They're ready to move ahead and spend as much quality time as they have left with the people that they love. Often, they're tired of the frequent hospitalizations, needle sticks, chemo and radiation that sap every last bit of energy and intuitively know that they need to conserve a little for the type of work that lies ahead. The people who fight death to the bitter end seem to suffer the most emotionally. Ask any hospice nurse to describe "terminal restlessness," and they will tell you it is the most difficult crisis we encounter. I've witnessed patients run in circles around a bed as though something is chasing them and, indeed it is. Death. When I see this, I know the end is quite near for these people; sometimes only hours or a day or two away. It's a traumatic event for patients and their families, though not everyone encounters this. People who are prepared psychologically and spiritually often pass from this world quite peacefully.
Plenty of people tell me they can't do what I do for a living. I hear this a lot, especially when I go to a home to pronounce a death. They say this as though death is something that's abnormal and that it takes a special person to do this. Perhaps they think my work is of the macabre; very dark, mysterious and disturbing. After all, none of my patients escape death. There are no close calls in hospice that have happy outcomes, but I believe in my heart that there can be good outcomes. We can die a good death and this one idea is more about making the most out of life than it is about dying. This basic tenet is what I hold onto when I start to feel as though hospice isn't a good fit for me. In my mind, my job is part mission, and partly a way to pay my bills. Mostly it's a mission. There are easier ways to earn a living in nursing.
Long before I started down this path, I read the book, Dying Well, by Dr. Ira Byock. I bought it when my mother in law was dying and right after my best friend's daughter was killed. This is such a well written book on the art and challenges of being a hospice practitioner with stories that bring meaning to our human condition. I followed up this book with the second book this author wrote, The Four Things That Matter Most. My closest family members have read both of these books and have found them beneficial, too. They're not only handbooks for the dying, they're great guidebooks for living.
In a nutshell, these four things that matter so much are love, thankfulness and giving and receiving forgiveness. This book was life altering for me. It's not easy to ask for and give forgiveness, but we humans are imperfect creatures. It only stands to reason that over a lifetime, we may need to give and receive forgiveness more than once. As for love, well it seems to me it's something we all strive to feel and give. Some are luckier than others in this department. Being thankful can be difficult, especially if someone is dying, but I think it's important to tell the people who matter in our lives that we're thankful for them and long before we're losing them.
What I took away from both books is the importance of being ready for the curveballs life can throw at us. We never know when it'll be our own turn to leave this earth, so it's important to live a life embracing things in our lives that matter most. Several years ago, my best friend lost her daughter abruptly when she was hit by a car. As horrific as that was, their relationship was in a very good place which helped my friend to heal and survive this event with her psyche intact. When we talk, she never ends a phone call without saying, I love you. It's important to her. She lives the principles in Dr. Byock's books.
It's been awhile since I've read these books, but I plan on rereading them from a new perspective as a hospice nurse.
In the meantime, I do what I'm able and ask only for insight and clarity when I'm trying to help those who make me think outside the box.