I began writing this blog – a blog primarily about parenthood – as The Knucklehead began his college career. I think it’s a better blog because of that. By writing in retrospect, instead of in the trenches, I was able to recognize the moments that really turned out to be important to me. It’s a perspective you don’t always get in the blogosphere, and one I’m more suited to anyway.
For similar reasons, I’m not going to be writing much about my work, not now. After twenty years in nursing, I just finished my first week in home hospice nursing, and lots of it was spent in system-wide orientation classrooms. Right now I don’t even know what I don’t know.
But I do have an opportunity at this moment to document a few feelings and observations while they’re fresh, and that might be worth looking back on in the years ahead. It might be worth reading to you, too, Knucks. People make a big deal out of graduating high school or college as The Big New Beginning in your life, but my experience is that life is really filled with a several Big New Beginnings, and a lot more smaller ones. Some of the apprehensions, expectations, hopes, and fears that come with each fresh start never go away. They visit you like old friends, and if you listen, they’ll have a lot to tell you.
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At this point, I don’t even have an easy answer to people who ask me why I want to do this. The implication is that hospice work is depressing, but I don’t find that to be true at all. I find the work to be refreshingly direct.
It’s not as if this is the only part of nursing that deals with dying patients. Especially if you’re working in a hospital or other inpatient facility, you’re going to be working with people who are dying or facing the possibility of their illness being terminal. We just don’t like to talk about it. There’s an unspoken rule that patients must always hold onto hope, no matter what their situation, and that we medical professionals have to keep the patient focused on the certainty of recovery. Often that’s absolutely appropriate. Hope is great. How can hope be a bad thing?
The difficulty is that this approach discourages patients (and their caregivers) from asking questions like, “What if I can’t beat this? If I don’t beat the odds, what will my progression toward death be like? How can I prepare for this? How can my family prepare for this?” For me, the discomfort has never been in talking about this, or listening to a patient talk about their fears. The discomfort has been in avoiding the conversation entirely, because I’m supposed to stay lasered in on hope. One of the greatest heartbreaks I’ve experienced in nursing is seeing a patient in deep psychological and spiritual pain because they want to talk about the possibility of dying but feel like they’re being treasonous to their treatment team to do so. Or because they don’t want to make their loved ones feel uncomfortable, or find themselves chastised for not having enough hope.
It’s not that hospice goes where other fields of medicine don’t. It’s just that we get to deal directly with a reality that’s already there. And for patients who have run through all the treatment options they care to, the decision to treat only their discomfort can make the quality of life at the end infinitely better than it would have been otherwise. Ironically, it can even make life longer; studies have shown that patients on palliative care (care directed at comfort rather than cure) often live just as long or longer than patients aggressively treating fatal disease.
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Hospice nursing isn’t flashy or sexy. It doesn’t make good television. It’s not where the action is. Where most of nursing is task-oriented, hospice is all about the process. It’s why I got into nursing in the first place.
As a patient, have you ever felt rushed at your doctor’s office? When you’ve been in the hospital, have you ever wished that people would spend more time with you? When you visit a friend in a nursing home, do you feel like the staff can’t take the time to sit and really listen to your loved one? Here’s something that might surprise you: We in health care feel that frustration even more acutely than you do. We feel it every hour of every working day. We became nurses or aides or PAs or doctors or physical therapists because we wanted to help people, and instead we’re being pulled in a hundred different directions because there’s not enough of us and we’re being tasked with caring for more and sicker people than we’re sometimes able to handle. We want more than anything to slow it down and spend the time with our patients that they deserve. In hospice, we get to do that. When I visit a patient at home, all my attention is focused there. My job is to listen. My job is to get a patient to tell me exactly what goals he has for the last months of his life, and to work with my team to reach the goals my patient – not his treatment team – has set. I’m encouraged to get to the bottom of a patient’s pain the way other nurses might go after an infection or low blood pressure. My boss isn’t a hospital administrator. My boss is my patient.
That doesn’t sound so depressing, does it?
I read an interesting analogy in the book Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley. Hospice nursing is like midwifery, just at the other end of life. Our work is helping facilitate the passage. Leaving this life is as natural and beautiful and necessary as beginning it, and it’s an honor to be allowed to help a human being with that journey.
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So, I don’t have an easy answer yet for “Why hospice?” It’s all of the above wrapped together. It’s the part of me that’s a sucker for the underdog; I want to help the people nobody else seems to want to be around. It’s the part of me that wants to learn what it’s like to experience the end of life, even if only so I can pass something onto my next patient, or friend, or family member going through this.
I’ve always felt nervous when taking on a new job in nursing, and this is certainly no exception. I don’t know yet how this job will affect me, and I’m going to need the counsel of the people who love me to tell me how I’m holding up. I’m humbled in the face of this work – it seems to me audacious to even imagine I’m up to it. After a career protecting people from death, I feel like facing it with them is the most important work I’ve ever attempted. I’m terrified of not rising to the defining moment of a human life.
And mixed in with all of that is a comfort that I’ve found the work I truly want to do. Driving home from my first day with patients, I dared to think that I might someday be exactly the person someone would want at their side in their final hours. It was an interesting commute: Fear, pride, elation, humility, terror, dedication, relief, and hope were roiling together inside me; I’ve never felt anything quite like it. It was a good feeling.
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You’re probably not going to hear anything from me about my work for quite a while. Hospice isn’t something I can write about with authority, and that won’t be the case for quite a few years. But I’m a believer in beginnings, and I’m more of an authority on taking the first step now than I ever will be. And so, Future Self, this was what was going through your head when you set out on this path. Maybe if you’re reading this now, it’s because you need it, so I hope this helps.
And Knucks, if you’re not starting out a new job at any stage of your life a little bit scared and a little bit bewildered and a little bit hopeful, then you’re not challenging yourself. It’s not such a bad thing to feel uncomfortable in life. It means you’re doing something right.
And it makes you a much more interesting human being. There’s little more tedious in life than someone who always know what they’re doing.