hospice

Jesus loves you, but you’re still going to die

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Every so often in hospice you get asked a baffling question, one that you don’t have a ready answer for. Sometimes it’s because the answer is simply beyond fathoming or beyond a simple explanation: “why is this happening to me?” or “why does God allow so much evil in the world?” Other times I’m baffled because the answer seems so obvious that I’m trying to understand why it’s asked at all. Such was the question I had posed to me a while back:

“Why does God have to take my mom? She never did anything wrong!”

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We need to rethink grief

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Artist Motol Yamamoto, who created labyrinths of salt to help express his own grief at the loss of his sister due to brain cancer. Click on the image for more information.

In my hospice, as well as in many others, when someone dies we consider the family members involved and rate their grief as low, medium or high. The thought being that if someone is on the low end, they will generally be fine. On the medium and high end though, we need to be more involved as this person may not cope well.

And I’m starting to think this is really missing the point.

There has been research recently in regards to complicated grief – grief that becomes debilitating to the point of becoming a chronic, life-limiting condition. This is the kind of grief that we in hospice are trying to identify, monitor and assist with. It differs from normal grief in that it is much more of a clinical condition, however it has many of the same characteristics as normal grief. The main determinants between the two, putting it simply, are duration of symptoms and the severity of them. Normal grief can involve impulsive crying, sleeplessness, rapid weight loss or gain, and even auditory or visual hallucinations. But they tend to subside over time and generally do not interfere with daily functioning. Complicated grief resembles PTSD, in that it can have these same symptoms but amplified and intrusive to the point where they cannot function normally. Continue reading →

Chaplain certification and other nightmares

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Before I completed my last unit of CPE several years ago I was encouraged to go for my certification through the APC. It’s the “gold standard”, the “union card”, the key to get you in the door of any Chaplain job in the country.

Only I didn’t go for it.

I have plenty of excuses now looking back. I already had a job that didn’t require certification and they didn’t really care if I was. I was the Director of Spiritual Services already and none of the chaplains I supervised had their certification either, so I didn’t feel that pressure. As Director, I was also really really busy and didn’t feel like investing any more time then toward putting all the papers together and so on. I also felt really secure in my position and didn’t feel like certification would really help me where I was. Plus, I also got the feeling that although my job had supported me through part of my CPE, they were done with giving me time and financial support to pursue certification.

Then I got let go. Continue reading →

Cancer from both sides: Joanie Baldwin Branch

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I wanted to feature a post and blog from a friend of mine who is dealing in her own way with terminal cancer. I worked with her in hospice, she as a nurse and I as a chaplain. After she was diagnosed with her own cancer I encouraged her to write about it. This post I thought would be a great introduction. You can catch up with her at joanbaldwinbranch.blogspot.com.

More Cancer Lessons:
I have so many thoughts running through my mind with the underlying theme being; I must start writing all of this down. So, here I go not knowing what will come out of my head or where to start this.
Since I have cancer, I think a lot of the things one thinks of if they know their time here on earth is limited. It was then that I discovered what a blessing this time is. If you know you don’t have all that much time, you tend to, at least mentally, write a ‘to do’ list. On that list are things like funeral arrangements, writing letters to my children, thinking about what songs you want played at the service, etc. The introspection is phenomenal. I am getting to know me at last. Just knowing me has been something that I have often pondered doing. Now it becomes a reality. I find so many things funny. I laugh long and often. Poking fun at yourself & this disease is so freeing. It has been influential with having my family members stop denying that I am going to die. They are learning to accept this diagnosis. There is no ‘elephant in the room’. We make jokes about my baldness and my chemo brain although my grandson, Ryan, says that I was forgetful before I ever had cancer & chemo!

Standing in the hallway

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once again I haven’t written in a while. once again due to feeling incredibly busy.

We had a speaker at our hospice a few days ago who talked about how social workers and chaplains tend to be seen as mildly irrelevant in hospice care. Many chaplains, for example, routinely carry caseloads of over 100 as well as on call duties. I know one chaplain who has over 100 patients and a church. That to me is insane.

Given the fact that I have about 80 patients, and only about 60 of those I see regularly, I should feel like I’m on a luxury cruise. However that’s hardly the case. Admissions happen on an almost daily basis, and these require quick attention even though the impulse is to put them off until absolutely necessary. A quick phone call to the family or patient can usually tell you how much of a problem there may be, so that can help to prioritize things.

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Hospice Chaplain fact #1: We work too hard

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Earlier this year I attended a conference for the Association of Professional Chaplains in Chicago. During the day there was a breakout session for hospice chaplains to get together and network. One thing we all found out was that most of us are stretched incredibly thin. It was relatively common for a single chaplain to have 75 or even over 100 patients on their caseload. Personally I can attest that we all tend to work too hard, myself included. For a while I had a caseload of about 100 patients which were spread out over four counties. There was no talk of hiring another chaplain, but after a while the management did hire one part-time which soon became full time. I ran into another chaplain locally who said that he had over 150 patients that he saw, and he also had his own church to manage!  Continue reading →

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

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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

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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

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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

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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.