Friday, May 4, 2018

Thinking on a Case

I have been reflecting a lot recently on the homecare patient I’ve been talking with; I wrote my recent case study on her and have spoken to her several times since then. I’ve consulted with my on-site chaplain supervisor, the priest, the music therapist, and other volunteers.  I’ve even talked about it with my family.    

First, the CASE STUDY:


My chaplain supervisor received a referral from the RN that a homecare patient desired to discuss spiritual issues with a female spiritual care advisor.  There was no faith community or religion identified for the patient, who is a 61-year-old female with end-stage esophageal cancer and brain metastases.  I first called on Monday, but she asked me to call back the next day because she wasn't feeling well.  When I called on Tuesday, she didn't want to talk then because she was sleepy.  We scheduled a call for Wednesday.  This case study records that call.  

I reviewed some of my articles on chaplaincy assessments, from my SCA module, and looked over lists of open-ended questions.  I selected a few that would be useful and relevant.  I also spoke to my on-site chaplain supervisor a few times and his advice was to provide the ministry of presence. 

Because this was a telephone call, my observations are very limited.  She has a raspy voice due to esophageal cancer.  She is alert and responsive. 
C1: Hello!  It's the time we had agreed to talk today.  Is this a good time for you?

P1:  Oh, I thought it was next week.  Not today, not now.

C2: No, we agreed to today when I called yesterday.  Is it a good time to talk?

P2:  Oh, I thought it was next week.  Can you call next week?

C3:  Well, this is the third time I've called and we've rescheduled twice already.  Are you sure you can't talk now for a bit.  And then I can call again next week to follow up.

P3:  Maybe if you give me some questions to think about over the weekend . . .

C4:  Yes.  That's pretty much what I do.  See, my role is to listen to you and to ask questions to help you reflect, not to give you my ideas.  So, I do have some open-ended questions--there are no right or wrong answers.  Would you like to hear some of them?

P4:  Right, okay. Yes.  

C5:  When we spoke very briefly on Tuesday, you said you did not have a faith community now or when you were growing up.  So, I'd like to ask about your beliefs and values.  What gives your life meaning?  

P5:  Oh, that's a hard one.

C6: Right, yeah.  It is hard.  What do you think is most important to you?

P6:  Caring for people.  I think that is the most important.  But I didn't do it as much as I should have.  

C7:  Would you tell me about some of the people in your life?  Your most important relationships?

P7:  I have a partner, my boyfriend.  He takes wonderful care of me.  And I have a few friends, not many, but one is from high school.  And my family, well, we haven't talked in a long time.  But I'm trying to fix that now that . . .things are like they are.

C8:  So you're trying to fix your relationship with your family now that you are getting sicker?

P8: Yeah. . . . these are profound.

C9:  What kinds of things help you when you are stressful?  How do you cope in tough situations?

P9:  I don't know.  . . .

C10:  The reason I'm asking about your past, is that we are getting to know each other.  And it's tough by phone.  But maybe in thinking about the past and how you have coped and what you have valued, we can get a sense of what you believe and that will help you go forward.

P10:  Everybody always told me what to think.  But I didn't take the time.  I put my life on hold and didn't make a decision, and now . . .

C 11:  So these issues have become more important now that you are sicker and facing the idea of death?

P11:  Yeah, because I want to know what is going to happen to me.

C12:  How do you feel about that?  Are you scared?  

P12:  I wasn't.  I have had lots of cancers and each time, I just thought, "Let's get through this." And I didn't think.  But now that I'm getting sicker, I am a little scared.

C13:  Scared of the dying process or what happens after?  Like heaven and hell?

P13:  I didn't know we were talking about heaven and hell.

C14:  Well, some people believe in heaven and hell, in reward and punishment.  But some people don't.  

P14:  I don't know what happens.  Maybe if we can contact all the different faiths in New Haven and, you know, have them come to me and just talk about their beliefs.  And I'll just listen and choose which is right.  That way I can know.

C15:  There are a lot of faith groups in the area.  Christian, Buddhist, Jewish, Muslim, pagan.  Some believe that nothing happens when you die.  Some believe in heaven and hell.  Some believe in a cycle of rebirth and reincarnation.  But you know, it isn't a question of who is right because we can't be sure.  That's why it is called faith, they believe it is true. You have to decide what is true for you.

P15:  I know.  It's just . . . I don't know.

C16:  That's why I was asking about coping and practices.  To see if there was something in your past which gives us a sense of your deeper beliefs.  If you were a gardener, perhaps an interest in natural cycles.  If you were active in community. . . 

P16:  (silence)

C17:  With all of this discussion, what are you hoping for? What will knowing about all these faiths give you?  What would be the best outcome for you?

P17:  These are profound questions.

C18:  Maybe these are good questions for you to think on over the weekend and then I can call you on Monday to follow up and maybe see about a home visit?  How does that sound?

P18:  That sounds good.  It's a lot to think about.  And we were just napping.

C19:  Okay, then I'll call again on Monday.  I'll be thinking of you over the weekend and praying for peace and comfort.

P19:  Okay, thanks.

She is experiencing spiritual distress with her terminal diagnosis, enrollment in hospice, and declining state.  She is worried about spiritual issues but unsure how to address them; she was even hesitant to start our discussion, putting me off twice and trying again a third time.  Also, her idea of hearing from every faith in the area is not feasible.  Between that suggestion and her inability to speak to her past--no mention of hobbies, career, jobs, any memories, any values--I wonder how her brain metastases are affecting her cognitive abilities.  It was doubly hard to assess this patient because we were on the phone; the referral my chaplain supervisor received and which he passed on to me was that she only wanted a phone visit--with a woman spiritual advisor--for now.  But I do not know the rationale behind this (neither does he.) 

ANALYSIS OF SELF: This is a tough one.  First, I found conducting the initial discussion on the phone really challenging.  Gone were the visual clues about her thoughts and emotions, about her interest and loved ones (in decorations and belongings), about her physical state and disease progression--I don't even know what she looks like. What race is she?  What socio-economic group?  Is she well-cared for?  Are her nails painted or hair dyed?  Does she lose focus and quit listening (“zone out”) during our talks? How does she relate to her boyfriend and how does he take care of her?  I don't think I realized how much information comes to me visually by sharing a space with someone.  She is a raspy, quiet voice on the phone. 

Secondly, I found I was even more challenged by someone with no faith background who was questioning her beliefs than I expected.  I've sat with non-religious people before, but they weren't expressing distress over their beliefs.  Her very questioning of her lack of beliefs is difficult.  And there is no way to give her the “right” answer.

TRANSFERENCE/COUNTER-TRANSFERENCE: My counter-transference involved addressing a person with no religious background--someone a lot like me, raised with no faith but with many questions.  Unlike what I know of the patient, I have spent more than a decade examining spiritual issues, through membership in my UU church, hospice volunteering, and now CPE--I want to question and consider faith and spirituality, to look death in the face (the Buddhist charnel house practice), for the benefit of myself and others.  But I wonder if I will experience a deathbed panic, similar to this woman's, or still be sure in my beliefs, like author and atheist Christopher Hitchens.  While I had many of these thoughts before and after my phone call, I tried to attend to our discussion--her answers and silences--during our talk.  I had prepped questions, having two other days to prepare, and adjusted accordingly.  She is one of my first patients who is really struggling with her faith and identity here at the end.  So many patients are Catholic and, even if not actively Catholic, find comfort in the rituals and prayers.

THEOLOGICAL REFLECTION: In many ways, isn't all theology about answering the questions about why we are here and what happens with death?  Faith and spirituality guide our actions and prepare us for the end, and, if applicable, what happens after death.  A Mormon friend of mine said recently that they "don't do" bedside conversions--you can't just be Mormon at the end, you have to live it during your life.  In many ways, living your life before death is the point of religion.  So, then, how do I address someone who hasn't lived with any practice, belief, or faith and still wants answers about death but isn't really prepared to have any beliefs, only to be told what is right?  I'm somewhat at a loss.  But I'm not going to tell her it's too late.  That might just be too scary and cruel.  So, following the advice of my on-site chaplain supervisor, I’m focusing on presence, perhaps in the hopes that she’ll reveal or discover more during our time together.

CONCULSION: I spoke to her again on Monday.  She reported experiencing more anxiety over the weekend and even took medication for it, which she doesn’t like to do.  She mentioned that her sister-in-law is going to visit, about which she is not excited.  “She makes me tense.”  I asked if she had any practices to bring her calm and peace.  We discussed breathing meditations and she said she would try it.  I will call her again tomorrow.   There has yet to be discussion about my making a homecare visit; my on-site supervisor believes she is too reticent for a visit, but we’re leaving the possibility open.
This on-going case study allows me to have a sustained interaction with one patient, which is rare at hospice oftentimes, as is such in-depth conversation about beliefs and dying.  So I’m able to practice many of my burgeoning skills; thankfully, she is also benefitting—she told me today that knowing I was thinking of her helped her be less nervous. 

NOW, back to my reflections: 

The best conversation I had about this patient was with our Catholic chaplain.  He was a parish priest for 47 years, working in Hartford with a mainly Spanish-speaking congregation.  A seminarian in Baltimore during the Civil Rights Movement and Vatican II, he focuses on the compassion of Jesus, the love of God.   Everything else is secondary for him.  He is ecumenical and non-judgmental; you might think a priest would have issues with a non-theist lesbian, but we're friends.   When I asked him how to reach this woman, who was fearful of dying but had no religious background or spiritual practices, he encouraged me to discuss with her the nature of Creation:  that God was a loving God who made people in God’s loving and good image and that Jesus was a perfect model for us through his compassion and love for all.  We can see examples of this throughout the world and history, rather like Mr. Rogers’s “look for the helpers,” I suggested.   As we talked, at a picnic table by the Sound, we were watching two geese care for their goslings and a pair of osprey setting up their nests; behind us, there was a family taking their loved one, limited to a hospital bed, outside to see the sunshine.

Because my patient has shied away from religious talk, I had to think of a way to translate this to her (for myself, I'm getting better at translating religious language, a la Kate Braestrup's wonderful Here if You Need Me and her direct equation of God to Love.)  I also did not want to preach.  My role, as I had explained to her, was to listen and help her reflect.  I wasn’t going to tell her my beliefs or Fr. Mike’s.  But I needed to help her explore her own.  She hadn’t given me much to work with—no references to hobbies, careers, activities—she said she hadn’t ever developed them like she wanted.  And she was still so scared. 

I reminded her that I had started by asking her about herself in hopes that we could get a picture of her past in order to understand how she could view the future.  I said, if we could discuss what she sees in her life and her world, we might be able to see her dying and death more clearly, which is what she had said right up front that she wanted.  I told her that from where I was sitting, I could see the Sound and it was a beautiful sunny day and that I liked to sit outside and watch the water because it was calming.  I also told her that we had goslings on the lawn, being protected and cared for by their parents.  And above me were room after room of patients being tended and comforted by love ones and staff, just as she had said her partner tended so wonderfully to her.  All around, I could find examples of beauty and care and love.  What did she see when she looked around?  She said she had a small backyard and that it was overgrown now.  I asked if the plants were starting to blossom, as it’s just become spring here in CT.  Yes.  We agreed there could be a beauty in even weeds growing in reckless abandon.  I encouraged her to sit, either inside or out, and just look at the world around her.  Even if it was a street view, she could watch the people and the rhythms.  And find distraction for her anxiety, reassurance in “ordinary miracles.”  Easier said than done, she admitted.  True, I said.

That night at dinner, I talked to my family about their views of the world. My kids groaned at the philosophical topic.    Loving to debate and discuss, my wife immediately brought up the issue of evil.  How to address crime, mental illness, even just run-of-the-mill assholes?  I said that I thought these were aberrations, that people were basically good, as Anne Frank had contended.  Even those we don’t agree with, or even actively oppose, want much the same we do—safety, security, love, comfort for themselves and their loved ones, even if they seek to achieve it in ways we can’t comprehend or accept.  Yes, there would always be Hitlers and Terry McVeighs and Adam Lanzas and the like, but there would also always be many more people opposed to them—the better angels of our nature.   Certainly there is death and destruction in the natural world, but it’s all part of a larger cycle of birth, survival, and death.  (Though I can’t explain mosquitos!)   For me, nothing suggests that death is anything but the normal end of life; certainly, we usually don’t want it to end, but I’m not fearful.  Sad, yes; scared, no.  I trust the beauty and love and goodness of this world.  As for after it, I figure my energy will join that of the universe and my ancestors but that my unique consciousness will just be a memory of my descendants and survivors.   “The soul takes flight to the world that is invisible and there arriving she is sure of bliss and forever dwells in paradise,” Plato said of the World Soul.

It turns out, that at the same time I was working with this homecare patient, I got an email from my uncle. explaining that his Methodist church is becoming the equivalent of a UU Welcoming Congregation, accepting all people.  In support of this, he had written an essay exploring his journey from his childhood loss of his father through his discovery of Christianity to his acceptance of lesbians and gays.  He's the most religious of the four siblings on my mom's side, having studied the Bible extensively and being very active in the social justice work of his church (he's done a lot of mission trips to build houses in Haiti.)  He believes everyone is a sinner and so it is not up to him to judge, in addition to the fact that he now understands the biological aspects of homosexuality.   I wrote back that, as a UU, I don't believe in sin nor the need for salvation; I don't ascribe to heaven or hell.  Certainly humans make mistakes, but evil is not an entity for me, nor is an omnipotent, omnipresent Being. Jesus, to me, was a compassionate and important teacher.  UUs find their sacred sources all over the religious map--spiritually, I'm much more Buddhist, probably with a touch of Wiccan pagan thrown in. 

I spoke to my patient’s nurse on Thursday who indicated that the patient really needed an in-home visit and had agreed to one with me.  But when I called to arrange it, the patient was too nervous for me to come over, forgetting she’d ever spoken to the nurse, much less agreed to it.  I don’t want to make her more anxious than she is, so I’m waiting a bit before reaching out again.  If only she could see all the love and care surrounding her and be soothed by it. 


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