Up for comment: when is doing “enough” too much?

I have a particularly hard case that I wanted to share. It’s hard not only due to the nature of the disease but to the difficulty of how to approach it. I thought it would be a good ground for discussion.

This particular case is a man in his with Huntington’s Disease who lives in an assisted living community, which is comprised of much older adults. He has adult children and is married. He has a history of some suicidal ideation and has had two attempts that both failed. This disease claimed his father so he is well aware of what is in store for him. He is currently receiving medication to help with his depression and this seems to be helping. I see him twice monthly and our hospice social worker visits regularly for support as well. His wife is recovering from a traumatic injury that nearly killed her. He tends to keep to his room watching TV and movies most of the day. He doesn’t go to activities and has few if any friends at the facility.

The disease is the big elephant in the room. He refuses to talk about it and the family refuses to talk about it. They acknowledge it but it is not a topic to be discussed. This gentleman also never really opens up about anything. For some time I felt that it was me, but after a conversation with his wife this is his norm – he has never been that open about his feelings or thoughts. In fact neither has she or anyone else in the family. During most of my visits we sit in his room and watch TV or movies, maybe talk a little sports. I brought him some Christian music once and he gave it back to me the next visit. My thought was that he didn’t like it, but his wife told me he loved it.

I spoke with his wife yesterday to follow up on a visit and to check in as to how a visit with his psychiatrist went. It didn’t go well at all. The psychiatrist wanted to talk about the “elephant in the room” which was the disease and this man’s eventual death, and he wanted everyone to talk about it. Nobody did of course, and the end result was that everyone left angry and offended, and this man’s children felt even less like going to see him (as they are also prone to the disease). His wife told me that nobody in the family talks about things, especially their feelings, and that they are fine with this.

Hearing this was a bit difficult for me. I agreed with the psychiatrist that the family did need to talk about the elephant in the room! However the push-back made me rethink this position.

Personally this reminded me of the fine line we walk sometimes between managing our own agendas against – or along with – our patients. Even when my agenda is valid and helpful, at least as I see it, it’s important to remember that it is still my agenda. This psychiatrist wanted to use a more Rational-Emotive methodology to break through barriers that he saw and bring the family to his own picture of health. Is this family healthy? Well that depends on your picture of health. Is it functioning? That depends on your picture of functioning.

This story also touches on a key element of chaplaincy – that the chaplain both is and isn’t a psychotherapist. As I have a background in both psychology and ministry I feel this tension strongly. In chaplaincy, the primary agenda is set by the other, where as in psychotherapy it is often set by the therapist. In my own experience of receiving counseling, I’ve had periods of strong resistance and anger that I had to work through, and my therapist (as well as my CPE instructors) had to hold my feet to the fire while holding me up at the same time. I understand the resistance to resistance this family feels. I feel my own resistance as well, and question my motives as well as my actions at times. Am I doing enough or is my version of “enough” too much? I feel that I want to be helping, but it is hard to know when you are helping in this situation. It makes me feel caught in a bind, sad and frustrated. Plus this man’s life stage is much closer to my own than are my other patients’!

So let me know what you think. Use this as a jumping off point for discussion. Feel free to comment below and see where this goes. What do you see here? What would you do? Was the psychotherapist wrong, right or neither?

Hospice Chaplain Myth #2: Fulfillment

Being in hospice means having to travel quite a bit some days. I’ve learned all the places – grocery stores and gas stations especially – that have places to sit down and eat my brought lunch on the go. I remember walking in to a grocery store to sit down and have lunch during a particularly hectic day. I still had my ID on and when the person at the counter noticed that I worked for hospice, he said “you must have a very fulfilling job”.

I remember thinking for a minute, saying “yes it is”, paying for my coffee and sitting down, knowing that I wasn’t sure if I meant what I said.

The truth is that this is a very fulfilling job, some days. But not always, and not often most. Personally, many days are filled with anxiety beforehand about how I’m going to get done what I need to, planning my route so that I don’t end up downtown after 3pm and so on. Some days I can see half a dozen people and feel like I accomplished little else but meet the medicare requirements for my position. Other days I hear of a death of a patient and my first thought is “well at least that’s one stop off my list today!”

Does all this point to burnout? Maybe. Hospice has a high rate of burnout among staff and I’ve seen it happen. Individuals are drawn to hospice work because they are caring and want to make a difference no matter what the cost. This can mean crossed boundaries, late night calls, and overextension. And more often than not it’s those individuals that get the rewards and Kudos – rightfully so for putting themselves out there, but it can also feel to those that try to guard their boundaries and time that they are getting the short end of the stick.

I also feel that sometimes chaplains especially can feel that what they do doesn’t matter all that much in comparison to other disciplines. Nursing runs the show and calls the shots. Social workers can provide counsel and care as well as crisis intervention. Everyone can pray with and for their patients. Medicare doesn’t even necessitate that there is a chaplain on staff – only that spiritual counseling be available. This can make a chaplain feel as if he or she is a bit of a wallflower.

But can chaplaincy be a fulfilling job? Absolutely. The flip side of this myth is also a myth – that what I do doesn’t matter that much. When chaplains do what they are specifically trained to be good at – being present spiritually with another – this can be the most fulfilling job on the planet. Even when you’re sitting at a comatose patient’s bedside for an hour, or taking a demented patient outside for a breath of fresh air that he hasn’t had in probably six months, when it’s done in the proper mindset these can be incredibly fulfilling.

But the day-to-day often gets in the way. Being mindful of my own cares and worries and trying to put them aside when I’m with a patient makes a big difference in terms of how I perceive my contribution to their care.

Dealing with Anger

One of the challenges some chaplains face, myself included, is the need to be liked and avoid conflict.  We want people to feel good and comforted, and this is what often leads us into the profession.  We’re the Rogerians in the room: providing that unconditional positive regard to all comers. Trouble is that when conflict takes place, it can feel like failure. So when conflict is on the horizon we dodge it. I can talk myself into twists trying to avoid or minimize whatever the problem is. Which tends to make the problem worse. Then when that conflict does erupt I tend to look at myself as the cause of it, as if conflict and anger are wrong and my fault. In doing so I take responsibility for their feelings and reactions, which isn’t healthy or logical.

One of the harder parts of my own development as a chaplain is raising that emotional boundary between myself and others. It’s easy in the caring professions to open one’s self up too much and to care too much for the other person, which neglects ourselves. This isn’t just chaplains but nurses, social workers, and on down the line. Sometimes this self-neglect takes the form of taking on what the other person needs to do – the “fix-it” or “savior” mentality, an outward focus that neglects the self’s boundaries. However I also see that this self-neglect can be inward focused as well, where I don’t try to fix the other person as much as make their problem my own – their problem is a bad reflection on me, so I take it personally. This can happen a lot with handling anger. This still avoids the problem though, and all I end up doing is taking their anger and internalizing it because it’s directed at me.

What I fail to do though is see that even though it’s directed at me it is still their anger, their emotion. How they choose to express it is their issue, not mine.

Overcoming Nature

I watched the film Temple Grandin with my wife over the weekend.  My wife works with autistic children and their families, and had been looking forward to seeing this movie for some time.  Grandin is a PhD and expert in animal husbandry, as well as autisitc.

Part of the story revolves around how she seeks to revolutionize the cattle industry by reorganizing slaughterhouses to make them more amenable to cows actually behave, making the whole process more humane as well as efficient.  For example, rather than forcing cows into insecticidal dips with prods and slick  chutes, which occasionally result in drowning, Grandin’s model uses curves to lead the animals to a stepped platform, where the animals simply walk into the dip, swim through, and back out.  It’s all pretty amazing in how simple the design and process appears, yet how complex the behavior is that the process is built upon.

What else is interesting is her reason for doing so.  Most of us would think that her affinity for cattle and the desire to limit their suffering would have led her to denounce the whole industry, but that wasn’t the case.  She understands and respects the life that is present in each animal (in the film, after a cow is killed before her she asks “where did it go?”), but doesn’t have the deep emotional connection that we would expect due to her autism.  The reason she sees for treating the animals humanely is simple but deep: “Nature is cruel, but we don’t have to be.”

I thought about this in light of hospice care.  This same thinking guides a lot of our care and judgment regarding care for those we care for.  We see nature at it’s most cruel sometimes.  I recently had a patient whom I was close to pass away.  He had struggled with pulmonary fibrosis for several years, struggling to breathe continually and leashed to an oxygen tank.  He gradually grew weaker and more dependent, to the point where he could only walk short distances.  Then he had a serious stroke, taking most of whatever he had left.  He could talk, though slurred, and could understand, but was otherwise unable to move.  Even his head had to be propped up with a neck pillow.  It was tremendously sad to see the cruelty of nature at work here, and our job was to make sure that cruelty was dealt with as best we could.

The physical pain was manageable, but the psychological and spiritual pain was tremendous. I spent time with him the day he died in his home, holding his hand and praying for him along with our staff and his wife and daughter.  Some of his grief was directed at God, and I can’t say that I blame him.  You can’t go through an illness like that, or accompany someone along that road, without wondering why.

There are plenty of answers out there for sure: the fallen world, suffering as part of life, the stripping of everything to increase our dependence on God, the work of the devil, the work of God, and so on.  Yet I found Grandin’s insight to be one of the simplest and maybe truest at the moment.  Nature is cruel in many ways, and we can’t overlook or overcome that cruelty.  Sin and death are, at least for now, permanent fixtures in the world.  However part of realizing the kingdom of God in the here-and-now is to see that while these can’t be overcome, we don’t have to fatalistically succomb to it.  Jesus reminds us, over and over again, that he has “overcome the world”, and even though that cruelty is still there in the world, we can overcome it as well.  Nature is cruel, but we don’t have to be.

Surviving Hospice

I often hear people, when I tell them what I do, respond with something akin to “I don’t know how you do it”.  Some days I can respond with “I enjoy what I do” or “I meet so many interesting people” or something similar.  Other times I think “I don’t know either!”  So I brought up this question to myself – how does one survive working in hospice?

Self-care self-care self-care self-care…

Easy to say and harder to do!  But that’s precisely the core of survival here.  There’s lots of good material out there on ways to take care of yourself to avoid burnout: art, time off, reframing, maintaining good boundaries, etc.  All of these are good and beneficial.  However two other things are required and are even more important.

First, you have to know you need to take care of yourself.  More often than not, it takes a meltdown or crisis situation to show me that I need to take care of myself.  When I’m stressed I tend to pull in and try to shove through whatever storm is blowing in my face.  My concentration is usually on going forward, not stopping to rest.  In the middle of stress I think our tendency is to do just that – get out of it as quickly as possible by surging onward even when we’re exhausted.  I’ve read more than one account, though, of mountaineers who ignored their own internal warning signs of exhaustion and fatigue and, rather than stop to rest, pushed on through the stress only to walk off the mountain.  I can fall in to that same trap.  But it’s amazing how even just a brief adjustment – for me it was a day working at home rather than the office – can rejuvenate and reframe.

Self awareness comes only with time and honesty with yourself.

Second, I must actually do what I need to do to take care of myself.  There are many times where I’ve stopped and said, “boy I’m exhausted!  I need a break!” and then never do so.  This is the pain of inertia that hits when we know we need to stop but don’t for fear of never starting up again.  I think that fear, rather than pride, keeps us from doing those things that we recognize that we need to do.  I fear letting things go, I fear appearing lazy while others (who aren’t taking care of themselves) push on, I fear lots of things.  Overcoming that fear again only comes with time, honesty, and practice.

When the world doesn’t fall apart when I let go of it, or when I stop caring what others think of me, or when I stop comparing myself to the “saints” around me, that itself is self-care!

Sound like grace to anybody?