Before I start this post, I want to share with you an amazing podcast from the BBC that I came across recently. Here’s the link:
You can listen to it on your computer, or download the podcast and keep up with all the episodes as they are posted. There are two at the moment and they are truly wonderful. The instigator and narrator is a wonderful British woman in her 80s. She’s gathered a small panel of “experts” – people who have thought a great deal about death during their lives. The first episode talks about the importance of facing our fears of death and dying. The second focusses on pain. I wish I could sit down with all of you and listen to it together – and then talk about our own thoughts, feelings, and reactions. We seem to have so few places to talk about such things.
If you’re a regular reader of this blog, you’ve probably noticed that I haven’t posted in nearly two months. I could tell you that I’ve been busy, that life’s gotten in the way, that I’ve been working hard on other things, and, while all that would be true, it’s not the real reason I’ve been silent.
The real reason is because I’ve been struggling to find the meaning in the work I am doing as a hospice volunteer. It’s not that I’ve lost the calling. That’s something I’ve felt since I first walked into the hospice where I still volunteer. It’s something I’ve known since my sister told me “You’re going to be an expert at this by the time you’re done with me,” shortly before she died. While I certainly didn’t want to learn how to be with dying from my sister, she was, as always, an excellent teacher.
I feel honoured to be able to help dying people and their families. I treasure the conversations we have had over the past 15 years – and I hold deep within my heart the memory of the people with whom I’ve sat as they took their last breath.
But increasingly – slowly over time and, of late, more frequently – I’ve found myself confronted with more and more rules and restrictions, tasks and prohibitions. Seldom do I seem to have the time to sit with someone who is dying. Or to retreat to the sun room to have a chat with a family member who is having a hard time. Instead, I’m in the kitchen, loading the dishwasher (or waiting for it to be finished!), rushing to answer the phone or fix someone’s lunch.
I have never minded the quotidian tasks that are part and parcel of volunteering – I’ve become quite the expert at making jello, grilled cheese sandwiches, scrambled eggs (though not poached, after all these years). Those things have been part and parcel of the services we do. My struggle has been that we are faced with an increasing number of rules about how things must be done and what we must do to the point where I wonder if “being with dying” is actually part of our “job.”
Perhaps you’ll think I’m complaining – or being unrealistic about the degree to which organizations must change when they advance from their “pioneering phase.” But when I listen to people talk as they do on the BBC program mentioned above, I am reminded once again of the reason why I became a hospice volunteer – and I mourn what seems lost in the process of growing, consolidating, and institutionalizing.
From my casual conversations during shift changes and with friends, I know I’m not alone in these feelings. I wonder if any of you readers out there might feel the same.
Have you thought about moving from hospice volunteering into death midwifery? It is still something you could do on a volunteer basis and would allow you to have that meaningful connection with people and their families that you have written about in the past.
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As a fellow hospice volunteer, I understand your frustration. But you must always remember, you work for free and therefore design your own time. Staying patient centered is not just what we do…it’s what we must do. Carry on fellow soldier!
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Hi Katherine, loved this post because it speaks to the changing nature of hospice programs. I, too, over twenty years saw growing regulations and competition alter the way hospice care was delivered and as a volunteer manager, saw volunteers struggle to deal with those changes. You are not complaining, in my humble opinion, you are mourning the loss of the way things were. You are not alone in this. And maybe you have fulfilled your internal promise as well. Whatever you decide, take pride in all that you have given and accomplished. No regulation can take that away. I’ve been following your journey for some time-blessings to you for your incredible work.
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Thank you so much for your beautiful, tender response.
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I wonder if you would prefer the volunteer work of a home visiting hospice. It sounds like your volunteer experience is in a residential hospice.
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Thanks Maureen. Yes I volunteer in a residential hospice and I expect we are subject to far more regulation and surveillance than in a home setting. It’s been very helpful hearing from others who are involved in hospice care and I look forward to being with patients and family during the holiday season, a time I always treasure at hospice.
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