H is for Hospice Work

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This post is part of the Pagan Blog Project (PBP). It’s the first one for the letter H. The illustrations are ads from a campaign for a stationary hospice in the USA. You can see the whole series in better solution at the copy writer’s website.

As you may have read in my earlier PBP post on Death, I have been participating in a weekly training course for volunteer hospice workers since early November. So let me start by giving you a few facts about the volunteer hospice training I got and the actual volunteer work I do so you get an idea where I’m coming from on this.

The last meeting of my training group will be next week, and until then we’ll have logged about 100 hours of training. That training alone was an experience I wouldn’t want to miss! We have learned communication skills, talked about ethics and how to keep a non-judgmental attitude, learned a few basics about dementia, palliative care, and what happens during the process of dying and after death, explored the role of spirituality and rituals, learned about grief and bereavement, were informed about the legal limitations of what we can and can’t do (for insurance reasons), and have done a lot of introspection about our motivations, our own experiences with illness, grief, and death. After that, there will be regular feedback for the documentation we write for the hospice service after each visit (so they know what’s going on in any given hospice relationship and how we cope with it), monthly supervision, and opportunities to do further training on particular aspects of the work we do. While I still expect to make mistakes along the way, I felt as well-trained and well-supported at this service as one can be when I began my first volunteer assignment a few weeks ago.

“My” organization is an ambulant hospice service, which means we go where the people we serve are living: into their private households, into nursing homes, and occasionally into hospitals (there is a saying: hospice is not necessarily a physical place, but it’s an attitude or concept). We serve people who are living with a terminal illness and/or their families and other close ones. What we do there is as varied as the people we serve. Some need help with running errands or doing paperwork, others need someone to talk to about difficult topics who isn’t part of their family/circle of friends, yet others need someone to just sit quietly with them and maybe hold their hand, and others yet again need someone to take care of their pets or children or plants. Sometimes we are called to visit the dying person themselves, other times we are asked to support their wife/husband/partner, adult child, or other (familial) caretaker. The basic idea is that we offer a certain amount of time (usually about three hours a week) and the people we serve decide what they want to do with that time (within the limits we stated – e.g. a volunteer may not want to work with children or dogs, may not want to cook or be able to carry heavy groceries, or may be uncomfortable in the house of a heavy smoker). It is assumed that everyone we serve can and will make their own decisions about their own lives (just as they’ve usually done for many decades before we met them), and we are to accept these decisions, even if we don’t like them or don’t agree with them. It’s not our job to judge the people we serve and we’re not supposed to “fix” anyone’s life, give them advice about what would be best for them or their families, or make decisions for them.

[Photo of an old man and a boy playing cards. Text: "Hospice isn't just about dying peacefully. It's about living until you die."]

And that brings me to the central aspect of this work for me: the element of what I want to call ego-less service. By this I mean a service that isn’t done primarily because we want something for ourselves, but because we want to serve someone else and their needs and wants. I’m using the term “ego-less” instead of “selfless” because we’re not asked to do away with our personalities/selves or give up our boundaries. A hospice volunteer is not an emotional service-bot but a human being with a unique history and personality – just like the people we serve. In fact, I believe we can only be good hospice workers if we actually have a full life to return to after our visits, and that anything else will eventually lead to burn-out.

The idea of such ego-less (or low-ego) service isn’t exactly new to me. In fact, I’ve been encountering it in various contexts (and I’m not even counting my experiences as a customer of various service professionals here). Paid work as a customer service agent via telephone. Reading intelligent BDSM novels that center on giving and receiving service (such as Laura Antoniou’s Marketplace series) and talking to BDSM practitioners who are into providing (or receiving) non-sexual service. Possibly even providing tarot readings for fellow members of Aeclectic Tarot Forum and a few other friends. And now volunteer hospice work.

None of these things seem to work really well if the person providing the service does these things with an ego-centric attitude. Sure, I can “egoistically” strive to become the best customer service agent (I’ll use this example because I think it’s the most relateable one from my list) compared to my colleagues, but the quality of my service will still be measured by how well I fulfilled the needs of someone else (= the customer). There are two components to a customer service contact: emotions and facts/deeds. That means, a good customer service agent needs to first take care of people’s disappointment or anger or fear (which is usually done by listening to these emotions and validating them), and then(!) give them the information they need, or do whatever else needs to be done to solve the problem at hand (at least as much as possible). Maybe you’ve been in a situation where you received a technically good solution for your problem from a customer service provider but still felt as bad as before, if not worse. That’s usually because nobody took care of your emotions and that means you only got half of the solution you actually needed. On the other hand, if all you got was an open ear and believable sympathy but your delivery will still be late with no refund, you’re likely to still feel better than before, and to feel you’ve still received adequate service. That’s how important the “emotional labor” part of customer service is.

I believe I can take valuable lessons from my customer service experience over into my hospice work. Focusing on the needs and desires of someone else and doing something that makes them feel better was indeed a fulfilling thing to do. I actually often enjoyed dealing with the challenges of the “difficult” customers (which are usually those with strong emotions) and was proud if they were once again calm and content when I said goodbye to them after a few minutes. The difference seemed to be that I always acknowledged their feelings as appropriate, right at the beginning of the conversation. And no, I didn’t have to fake that sympathy very often: after all, I’ve been a customer of similar businesses myself and know how frustrating it is when a delivery doesn’t arrive in the specified time, when I’ve received a damaged item, when a refund isn’t issued immediately, etc. (This was definitely made easier by the fact that I usually wasn’t the one who was responsible for the original problems, so I didn’t have to confront them as my own failures.)

[Photo of two old women playing cards and laughing. Text: "Sometimes the best pain medication isn't medication."]

There is one thing, however, that I can’t and shouldn’t take over from customer service into hospice work. As a customer service agent, I was expected to take over responsibility, find a solution, and generally do all the “doing” necessary to fix the problem. As a hospice volunteer, this is the one major thing I’m not supposed to do. Sometimes that’s hard for me to do. After all, I’m a pretty good “fixer” in my everyday life. I still have a job where I’m supposed to solve problems (preferably before they come into existence), and I have a tendency to suggest solutions when someone tells me of a problem they have. (Which is why – when I’m not sure what is

desired – I’ve taken up the habit of asking if the friend in question needs me to just shut up and listen or if they want me to brainstorm potential solutions with them.)

But that’s exactly why I enjoy the challenge to do things differently in my volunteer work so much. I get to grow beyond who I am already. I get to try out and train different sides of me. Here’s one more example. As I described over in the D is for Death post, I’ve already done some hospice-related work last year when I visited people with dementia in a nursing home every week for a few months. This was a context where the skills I’m usually valued for were of very little relevance. It was irrelevant if I was good a expressing things verbally. It was irrelevant if I could argue well, understand academic texts, work with a variety of computer programs, organize events, or read obsessively. What was needed instead were my emotional capabilities – the ones that are otherwise often underestimated, ridiculed, or denied to be existing in the first place. Was I able to feel and express sympathy with someone’s sadness, grief, or anger, even if I didn’t understand why they were feeling that way in the first place, and even if I had no way of “fixing” the problem (the dementia wouldn’t go away, no matter what I did!)? Was I able to empathize with and validate all of the emotions of all of the different family members without taking sides or involving myself with their dynamics in any other way? Surprisingly, I seemed to be rather good at this for the most time, and I often went away from these encounters feeling incredibly blessed for having had them. There were some moments when the people I visited or their family members expressed profound gratitude for what I was doing – which often wasn’t doing much of anything but being there, listening, and accepting whatever came up.

So of course I get something back from this work, even though I initially started it because I felt a strong call to do something that didn’t primarily benefit myself and “people like me and my friends” (unlike my previous volunteer work of 10+ years as an organizer of countless no-budget LGBTQ subcultural events had done). I had a strong feeling that I needed to branch out and do something that wasn’t primarily about me and my interests and my idea of a good time. And yet, of course I still do something that matters to me, something I’m interested in, something that I ultimately enjoy doing. Here are some more of the benefits of this work: I often get to skip the small talk and jump right into what really matters. I get to let go of all the identity labels I usually wear and be a human being who is spending (often very intimate) time with another human being. I get to make something that is a taboo for many a little less scary and a little more accessible (often by the simple fact of telling someone what it is I do). I get to shut up and listen and let someone else call the shots for a while.

[Photo of an old man laughing and half hiding his face behind his arm. Text: "It's okay to cry when someone is dying. It's also okay to laugh."]

I’m also quietly amused by the fact that much of this almost sounds like what other people say about why they like to bottom (= be the “passive”/receptive one) in their BDSM encounters… And indeed, there seem to be some interesting similarities between BDSM service and hospice work. The focus on the needs and desires of someone else and the willingness to fulfill them if possible within the negotiated frame is probably the most obvious one. Certain communication skills (including nonverbal ones), attention to everyone’s boundaries, a heightened awareness of power dynamics, a strong emphasis on issues of consent (and ethics in general), respect for people who are into different things than you are and a generally non-judgmental attitude are other important aspects of hospice work that I’ve also encountered in connection with BDSM.

And then there’s spirituality and the idea of a spiritual service. While I haven’t been called by any particular spiritual being to do a certain kind of work as a service to either them (such as when people dedicate their volunteer work to a specific deity) or my community (such as the “classic” shamans I mentioned earlier) or both, I still see a spiritual component to my hospice work.  I’ve been trying to find words to better describe what I mean by “a spiritual component” but I’m still failing to do so right now. What I can say is that I don’t mean we constantly have deep, meaningful conversations about faith or the afterlife (or the lack thereof) with the people we serve – although the topic does come up occasionally. Maybe it really boils down to the fact that I feel inexplicably called to do this work…

And with that I unceremoniously break off and take note of the fact that I don’t have any “final” words to say on this topic, yet. I expect it will come up again in some way later on.

——-

Here are two further links that seemed to provide some useful information:

Hospice Foundation of America (HFA) Blog – discusses a variety of topics related to hospice work.
Handbook for Mortals: Guidance for People Facing Serious Illness – basic information about facing serious illness, about the dying process, and a bunch of related issues

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