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On Death & Dying

I’ve been having a hard time at my job. Certain aspects of it have been getting to be too much for me.

I still enjoy the counseling. I enjoy visiting patients and families and I think I do good work with them. It’s so meaningful and restorative to me to be able to help someone through such a challenging point in their life. I often reflect on when I, myself, was in a similar situation and how grateful I was for the people around me who stepped in to help see me through it. I sometimes think that is what life is about — a series of interactions in which when we are strong, we help others and when we are not, they help us.

What I’ve been struggling with is constantly hearing about illness and disease. Every Thursday I spend two hours in an interdisciplinary team (IDT) meeting. I sit at a long boardroom table, my high heels crossed against the table leg, my case load binder open in front of me, paperwork and pens and sticky notes nudging into everyone’s else’s piles of the same. On my left is our social worker, on my right is one of our nurses. Across from me sits another nurse, sandwiched between the chaplain and the massage therapist. At the end of the table the two home health aides sit next to each other. At the head of the table our team doctor sits between our clinical director and office secretary.

And for two hours we discuss all of the patients we currently care for. We begin with all of those who died in the last week — what their death was like, how the family is doing, when the funeral or memorial service will be and any psychosocial risks for the bereaved. After that, we discuss the new patients we have taken on in the last week — their diagnosis, whether they are at home or in the hospital or in a nursing home, who is caring for them, what kind of help they might need, and what our team can do for them and their family as a whole. Finally, after that, we discuss all of our current patients — any change in health status or caregiver needs, and who is visiting when.

Words and phrases like stage four colon cancer, mets (metastatic) to the bone, lung cancer, swelling in the brain, morphine, lung mets, albuterol, prostate cancer, bleed out, bed sores, mets to the ovaries, liver cancer, severe hip pain, hospital bed, brain cancer, terminal, alzheimers, dementia, breast cancer, stroke, cardiovascular disease, pancreatic cancer, aortic stenosis,  tumors, renal disease, COPD, failure to thrive, and on and on.

I can’t stand these words. They make my belly go cold with fear. As I sit there for those two hours, hearing these words tossed around I literally feel those places in my body as they’re said. My liver. My lungs. My heart. My brain.

I think about Greg and I think about my life and I think about how much I don’t want to get sick ever. I think about how much I want to do with my time here and how much I want to have kids. And I can’t help but think these things and sometimes I can’t get these words and phrases out of my head. Literally, sometimes I wake up in the mornings with the word scopolamine in my head. (It’s a kind of pain killer.)

And you know, I look around the room at the doctors and nurses and social workers and secretaries and although some of the nonclinical people like me will squirm at a particularly graphic description of someone’s medical problem, for the most part, none of them seem to be at all haunted by these words.

I know that so much of my fear has to do with having lost both of my parents to cancer and having watched that disease ravage their bodies over the years, but I can’t help wondering how no one else seems to be haunted by all this disease-talk like I am. I’m of the opinion that what we think about grows — another reason I hate having these thoughts and words and illnesses in my head all the time. But then I think about oncologists who work closely with disease every day — where do they put these things? How do they wake up in the morning without the word cancer on the forefront of their thoughts?

And I just keep wondering, is there a way for me to do this job without constantly ingesting it all like this??

6 Comments

  1. Claire, just accept what is beyond your power to change. Accept the mortality of yourself and the ones you love or have loved. You hear the dread words like cancer and dementia, and you fear them. Fear can make you a victim of a disease that may never strike. It is not up to you to order the universe, just your small part to make things better that are within your power. Talk to an oncologist. I’m sure she would be daily frustrated with her powerlessness and lack of remedy. But you have to let go of what you cant control or even influence. You have an important role to ease the psychological suffering of the dying and their families and guide the emotional rebuilding of the survivors. Use the power you have, let the rest go.
    Paul

    Comment by Paul on August 30, 2008 at 10:11 am

  2. Good advice there from Paul, and probably exactly what you would say to any colleague who came to you to share/discuss similar conflicted feelings. Is there a counselor for the counselors where you work, Claire? I would think that a hospice-type organization would *have* to have some sort of “crisis intervention team”, an emotional mentor if you will, for times when the case load gets exceptionally difficult. I know…you are supposed to “be strong”. But goodness, without that humanity…the compassion that makes you so good at your job…does that not also leave you vulnerable to the feelings you’re expressing here? Probably the middle of one of those two-hour IDT meetings is not the time to voice your disquietude (although, on the other hand, maybe it *would* be) but surely, at least among your non-clinical colleagues, you are not alone in this. I know you are smart enough to realize that although “none of them seem to be” (haunted) with that subject material always on the table there would have to be plenty of emotional residue.
    Hey, here’s a thought! In the guise of a writing project (you could easily sell this one to any number of professional publications) could you do a series of “How do you cope with it?” interviews? Everyone from the seasoned MD to the home health aides to the office secretary to, heck, the local firefighters and police people would have varied and effective answers to that question, some of which might be personally useful to you.
    Just a thought.
    I know I could not likely do what you do on a daily basis, for all the reasons you’ve mentioned. Cranking the up-beat music on the way home, or going for a half hour run simply isn’t sufficient to shake off the trappings of death and suffering on a daily basis. It’s the same reason I choose not to immerse myself in television coverage of all the various gruesome or tragic events that occur in our world. Bad enough that it occurs, and I’m really not meaning to bury my head in the sand. But we can only exert positive effect on our immediate realities, and drowning in other people’s troubles is simply too draining emotionally & leaves me incapacitated to deal with more local folks/friends who each do have their own travails and need an ear from time to time.
    So, no answers from this direction. But I feel sure that eventually you will find your own.
    For now? A peaceful, restful, and restorative long weekend to you and to Greg!

    Comment by Carroll on August 30, 2008 at 12:41 pm

  3. Claire, just quit your job and go sell hot dogs to morons all day long. That should take care of your belly. OR cut the crap and grow up and deal with it and realize that in order to do anything meaningful in this world you gotta eat a big bag of shit from time to time.

    Comment by Bob on August 30, 2008 at 2:18 pm

  4. Claire – I don’t think I could do the hospice work you are doing. It’s certainly not something I would want to do, though I will reserve whatever responsibility I have to my loved ones.
    I remember being surprised when you said you’d be doing this kind of work, given what you’d already been through… then I also thought that you’d be uniquely suited to this work and that you’re likely very good at it. You sound good at it from your posts here, which have been eye-opening for me – that dying people are often dying alone or without the things they need… and how meaningful it is for them to receive a visitor to sit with them. I think you are great at helping people Claire, but maybe you need some sort of a shift in how you are doing it.

    Comment by Christine on August 30, 2008 at 3:07 pm

  5. Claire, Thinking about this again while driving home. With your permission, I would like to share my thoughts – When the nurses are giving their reports and comments, sometime I listen and not. It upsets me when they speak wrongly of an individual, no one is perfect, (then again, are the nurses having a good day?) and the patients are not well, so they will act out of character. You know when you think about it, we are lucky that the patients welcome us.
    So when the nurses are speaking just welcome that there are medicines to help ease the pain and this gives them dignity for the end of this life.
    Nurses and physicians are like mechanics they know how to repair, they are guided by a higher power.
    My thoughts are that we choose our own diseases to learn the lessons and gifts that it brings us. Hang in there, you are a special person.

    Comment by Diane J. Beamer, PhD on August 30, 2008 at 8:58 pm

  6. Thank you all for these comments. It’s amazing to get so much advice and encouragement and support.
    It feels good to just put it all out there.

    Comment by Claire Bidwell Smith on September 2, 2008 at 9:23 pm

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