Monday, May 26, 2008

Where did the week go???

I can hardly believe that the first week of field ed is already over and there's only nine more to go!  I'm gonna have to get on the ball with this blog to keep you folks updated more often because I have so much to say! ;o)  Well with one week under my belt I can say that this will be an amazing summer because I have already been pushed far out of my comfort zone and witnessed many beautiful moments in merely a week's time.  

Much of my work at ICEOL remains the same as it has been during the academic year working on the APPEAL conferences.  The next APPEAL conference will be in Dallas, TX on July 11-12th so we are now beginning to feel the crunch of time as we make sure marketing material goes out, finalize logistics and work on making this conference happen.  A majority of my job for APPEAL is spent in working with the faculty who will be presenting in putting together the various powerpoint slides in a master show, having them double/triple check to make sure those are the slides they want to use and that they are in the correct order, and what portion(s) of the DVD they would like to show and where in the presentation it will be shown.  We have decided to continue to improve the flow of the presentations, which is the conference, by embedding the movie segments into the actual presentation.  This means working a bit more in advance on deciding what portions will be show because it takes time to make these files and not something that can be changed the night before the conference.  The faculty also vary from conference to conference, and though same remain the same there will be new faculty so there are significant changes for each conference.

As much as I enjoy my time with ICEOL I am looking forward to spending most of my field ed time with Duke Hospice where I get to be with people.  The work I do with ICEOL contributes to educating doctors, nurses, chaplains, social workers, ect in the APPEAL curriculum and in turn hopefully affecting their work with those in palliative care, but I also desire to be on the "front lines" with those being affected by palliative care.  There is much to share about my first week with Duke Hospice.  My time each week will consist of visiting patients and writing documentation about the visit, meetings including a weekly supervisor meeting, writing a verbatim for weekly supervisor meeting (much like a verbatim for CPE), researching pediatrics and hospice (Duke Hospice hopes to be able to do more of this), reading several books my supervisor has selected and writing a reflection upon them, and various other tasks.  In preparation for being given four patients to be in charge of for the summer (meaning, taking care of their spiritual needs) I attended hospice volunteer training last weekend (Fri-Sun) to get a good overview of hospice and see the role of the hospice volunteer.  I will also be spending significant time shadowing Jodi and Danny, the two chaplains, as well as a nurse, social worker, ect to see the various parts of hospice that come together to care for each patient.  Hospice care is based around an interdisciplinary team consisting of the doctor, nurse, social worker, chaplain and volunteer who care for the patient, so if you go on hospice care you get all of this!  (If you want it, of course)  I will also spend some time at the ICF (In-patient Care Facility), a short term stay facility, and the bereavement staff in charge of bereavement care, which is available to the family for up to thirteen months following the death of their loved one.  More about the different things I do and have learned about hospice in general as I go through the summer, but for now onto the stories!

On Tuesday I shadowed Jodi to get a taste of what the role of the hospice chaplain is, and the identity I will be putting on for the summer.  The role of the hospice chaplain is to care for the spiritual needs of the patient and patients are typically seen by the hospice chaplain once a month, and more if requested or a crisis occurs.  Hospice believes that everyone has spirituality, which is different than religion, and so it is the chaplain's job to address their spiritual needs.  I met a woman who I will be visiting with this summer named Esther* who is an elderly African American woman with lung cancer.  Esther has been in hospice care for over a year and has a fairly positive outlook on life despite living with this terminal illness and the pain that comes with it.  Since she came into hospice care her ability to walk around and care for herself has decreased, but she is still able to do much for herself.  She is quite talkative and excited to meet with me so I am looking forward to my time with her.  She was very excited to tell me about herself and show off her oxygen machine.  While we were there Jodi got Esther to sing "Precious Lord Take My Hand" with her and it was incredibly touching moment to see this woman join Jodi in song that was familiar to her.  Although Esther felt as if she couldn't sing anymore because her voice was weak she knew the words and joined in when she could.

The next woman I met is Deborah*, and elderly woman with dementia who lives with her son and daughter-in-law, but is primarily cared for each day by her granddaughter who lives next door with her family.  Deborah only speaks a few short sentences a day, but seems to still recognize her name and be aware of what was going on around her.  As Jodi and I sat talking with her granddaughter, keeping Deborah involved in the conversation, I noticed that she seem to listen to us and respond somewhat through making eye contact and smiling.  I was struck at how easily the granddaughter continued to keep Deborah as part of the conversation even if we were not speaking directly to her.  Being told Deborah only speaks a few sentences a day I considered it a very special moment that as Jodi and I took turns saying goodbye to her that she responded to each of us with a clear "goodbye" accompanied by a smile.  She had been quiet during our entire visit, talking to her and each other so to experience her words was very special.

Our next travels brought us to a facility where I met a elderly woman, Rachel*, who is "actively" dying of congestive heart failure, and has continued to hang out over a week longer than expected.  As I held her hand and Jodi sang "It Is Well With My Soul" she closed her eyes and continued to grasp my hand.  At that moment I felt as if I were standing on holy ground, truly sacred space, to be invited into a place with someone so close to death and so appreciative that we have come to be there with them, even as a complete stranger.  I was amazed at how eager she was to hold my hand tightly, not wanting to let go, and let me be close to her and look into my eyes and thank me for being there.

Also in this facility Jodi and I met with an elderly man, Peter* who greatly impacted my day.  This was the first time meeting Peter for the both of us, and Jodi received an important call as we stepped in the room so she let me stay with Peter.  I was struck when Peter was not satisfied with holding my hand but gently grabbed my other hand and arm as well as if he needed human touch.  Later we realized we had walked into his room without the needed gloves and gown (more for our protection due to a small infection) and I was saddened as I re-entered the room now covered with gloves and a gown which would interrupt the physical touch he seem to eagerly desire.  While the gown and gloves were for my safety, and possibly his own, it hurt that this may continue to lead to his feeling of separation from people as he approached the end of his life.  His family was unable to visit much except for short visits on the weekends and so it seemed that Peter was very lonely.  During the time Jodi was away Peter struggled to talk to me.  He told me that I was a beautiful girl, and that he was having a hard day, he seemed to be frustrated with not being able to say what he was feeling.  It was as if the connection between his thoughts/feelings and being able to speak about that had been broken.  We found out that Peter was a retired minister and so we asked if he would like to lead us in prayer, and he did so very willingly.  It was a beautiful prayer because it was so honest and real, as he prayed to God about not understanding what was going, and for not understanding the not understanding.  His prayer brought me to tears and a man I had known for 10 minutes would be so real and honest in front of complete strangers, and that even as a minister he was able to be honest about his struggles.  Peter told Jodi that God was working on him through her and there was a sense that our visit greatly impacted him.  Also noteworthy was Peter's humor, despite his great frustration with what he was experiencing and not being able to say what he needed/want to say he joked with Jodi, I and his aid.  On a personal note, his humor reminded me greatly of my own father's humor, and how my dad had continued to keep his humor even as he drew close to his death.  I feel as if Peter will play a special role in my summer and I look forward to meeting with him again. 

Our last visit on Tuesday brought us to a man, *Gideon, who everyone thought was going to pass away several days earlier but continued to hold on.  We visited some with his daughter before going in to see him.  When I met Gideon he remarked to me about the sunshine coming through the window, how he loved it and wished he could be outside in it.  Jodi asked Gideon what he wanted her to pray for and so Jodi led us in a prayer for relief of pain and for life.  Gideon also surprised me by adding his own words to her prayer, praying to God for strength, and again, as a completely stranger, I witnessed a very real and honest prayer.  I stood on sacred ground as Gideon was so thankful for our presence and saying that he believed it was "the beginning of the end."  As we said goodbye to him he told Jodi that he loved her, and he also told me that he loved me.  The look in his eyes as he held my hand, looked at me and told me he loved me said that it meant a great deal to him that we had come to see him.  I again was amazed by the openness and the great impact of simply being present with people.

And that was just Tuesday :o)  On Wednesday I shadowed Danny, the other hospice chaplain.  We visited a different facility to check on one of his patients and meet another woman I will be "in charge of" for the summer.  With our first visit I witnessed how the role of the chaplain can involve being an advocate for the patient in making sure they are properly cared for.  Part of hospice care involves pain management, not doping people up into some drug induced fog so they can't feel pain, but controlling and managing their pain so they can live out the rest of their days as comfortably as possible, and the patients have control over the extent they would like their pain managed.  The first woman was in obvious pain and so Danny made sure the nurse was notified and would address her pain, and find out what exactly was the cause of her pain.  Something I learned from sitting in the APPEAL training for ICEOL (and briefly in hospice volunteer training) is that pain is more than just physical, it can also be emotional and psychosocial.  When one is in pain it may be one or all three parts of pain, but being in pain can affect the rest of our being and so this is why hospice sees pain management as highly important so that patients' pain is not interfering with their ability to live out the rest of their life as well as possible.

The next patient we saw was Tabitha*, and active elderly woman with dementia.  During our brief visit with her she was very outgoing and eager to communicate.  Tabitha may be my most difficult patient to visit with because of how the dementia affects her ability to communicate, and this makes me a bit anxious because I have never been around someone with dementia before.  As we were at the facility Danny was contacted by a family and asked to come for a visit.  Although he had been by their house just two days before the family felt as if the end were near and would like him to come by and so we left the facility quickly to get to the family's house.  The woman we would be seeing was 54 years old with colon cancer.  When we arrived I was quickly introduced to the family, meeting her sons and their fiances, and her mother, along with the hospice nurse who happened to be there.  Once the introductions were made we went upstairs to see her and as soon as Danny approached her bed the woman took her final breaths and passed just as I was entering the room.  After knowing this family for five minutes I was thrust into a very intimate and personal time in their lives as they witness their mother/daughter die.  I had no words to say, especially as a completely stranger, but I think in that moment what the family needed the most was our presence, and not our words.  Luckily Danny was there and offered a blessing over her as she passed, some scripture (Psalm 23, John 14, Revelation 21) several minutes later and led a prayer for the family.  I felt somewhat helpless watching them grieve and also somewhat awkward being a completely stranger in this intimate moment of their lives, not knowing them and not getting the chance to meet her before she died.  Danny and I ended up staying for the next couple hours with the family sitting/standing with them, talking with them, and waiting for the funeral home to come remove her body.  It is a bit hard to describe all the emotions I felt in that experience having witness a woman die right before me and be amidst a grieving family.  My heart went out to them as I stood around them crying over her and standing by her bedside, but I questioned what was appropriate to do as a complete stranger and wanting to respect their space.  As we stayed with them and were leaving it seemed that the family desired Danny's presence because  he had been with them before, but they were also thankful for my presence.  They even hugged me as we left although I had only known them for a short two hours, but that two hour journey was a most sacred and intimate time of their lives.

This entry is already so long so I will break for now, but definitely more to come later!

(*names have been changed due to confidentiality)

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