How can we help? A hospice story Tonya Manselle, MSW
The provision of spiritual care by hospice programs is largely unregulated. Many patients are not fonnally affiliated with a particular church or congregation. Yetthey often experience spiritual pain as they approach death. The job of the pastoral care-giver is to assist patients and families to achieve spiritual peace in this difficult time in life. This isthe story of one man’sjourney in hospice and the crucial role the pastoral care-giver played to ease the burden of the patient and family. The letter came in the morning mall with a check for $5.00: “I am not able to attend churchregularly any more, so I would like a part of my tithe to go to the people who helped me and myfamily so much—caring for my son, Joe. It won’t be much—maybe $5.00 a month or a little some times... God bless you in your work and my never ending
Tonya Manselle, MSW is Program Director at Mercy Hospice Care Program in Urbana, IIlinois.
thanks for the support you gave us in our time of need. In His Name, Myrtle Smith*.” The memories came rushing back of my first contact with Mrs. Smith over one-and-half years ago. It was a typical blustery March day in flhinois—not a hint of spring yet, only the hope based on the inevitability ofthe seasons. I wrappedmy coat tightly around me, reached for my hospice materials and paused a moment to reflect on the referral. A physician who rarely referred had called earlier inthe day asking me to see a patient he had “inherited by default.” Following months oftreatment in a large medical center nearby the man had returned home to his motherto die. The diagnosis was throat cancer. He had received radical neck surgery followed by extensive radiation treatments, which had left radiation burns. This was probably not going to be pretty. As I walked up to the subsidized high rise where mother and son now lived, I tried to imagine what my feelings would be if my son had come home to die. I rang the buzzer for the mother’s apartment and in a few minutes she appeared. She lookedtired and harassed. Obviously she had her own health problems because her legs and feet were badly swollen. She brushed aside my concern as unimportant right now and “besides what do you expect when you’re almost 80?” We went up to her apartment before going to her son’s so she could explain Joe to me.
“He may not let you in,” she cautioned. “Sometimes he gets mad and he acts mean.” “I would too,” I thought, “if I were dying a painful death in my 50’s.” I explained about our services—the home health nurse, home health aide, the volunteers, and the inpatient units with the private rooms. She nodded pleasantly and explained what a wonderful family she had and how all of Joe’s brothers and sisters were helping keep him at home and that there were only two things troubling them now. “His pain,” she said, “sometimes it’s just awful. Surely there’s something that will help.” I looked over his list of medications and knew that therewere other drugs more effective and assured her we would work on that problem until he was as painfree as possible. “Andtheother thing you need. What else can we do to help you and your son?” “Well, Joe kinda fell away from the church in his younger days and he’s led a pretty tough life as a carnival manon the road, but now I think he’s searching. He’ll ask me to pray for him and read scriptures but somehow I just don’t feel adequate to help. We’ve got a nice young minister that comes here to the building but, you know, he’s afraid of dying so I don’t want him. I sure don’t want anyone that’s going to try to preach to him. He needs comforting, not condemning. “Of course we’ll help,” I replied with more assurance than I felt. What a
*The name has been changedto protectprivacy.
The American Journal of Hospice & Paffiative Care January/February 1992
Downloaded from ajh.sagepub.com at Glasgow University Library on June 27, 2015
case to throw into the lap of our new Pastoral Associate who had never yet gone out of the hospital on a hospice call. Oh well, we could always refer this one to community clergy. After all this family was Protestant and our associate was Catholic and a woman to boot! We walked down the hallway to her son’s efficiency apartment and I wondered fleetingly howl wouldhandle things ifJoe refused to see me. Since surgery had ended his ability to speak, how would he be able to let me know if he wanted me to leave? The apartment was small, clean and sparsely furnished with a hospital bed and couch in the room. I noticed the odor when we walked in and realized it was not dirt, but what was it? “Joe, the hospice ladyis here. Can wecome in?” He was lying on the bed curled up in an attitude ofpain. I could see he was a tall manwho was wasted now. As he turned toward me I fought to keep my face impassive. The radiation had caused extensive facial bums and his lips were swollen to the size of sausages. The odor was coming from an open tumoron the side ofhisneck whichwas oozing bloody pus. His eyes blazed at me as ifdaring me to say ordo anything which might show my horror. “How do you do, Mr. Smith” I said as I extended my hand. “My name’s Tonya Manselle and I’m from hospice.” He continued to stare at me as I explained the hospice program and for the first time I fully realized how much we depend on those we’re speaking with to guide us verbally. He remained still and attentive and asked a few questions by writing them on a pad of paper. In a short time I left promising to callhis motherthe following day to see ifhe desired our services. Joe agreed to come into our program and we moved quickly to try to alleviate his pain. An appointment with ourMedical Director led to a change in medication and eventually the use of a
painpump. Problems with edema complicated medication dosage and restlessness dislodged the needle from the injection site once,but the home health
The job of the pastoral care-giver is to assist patients andfamilies to achieve spiritual peace in this difficult time in life. nurse continuedto go out and work on pain control. Dosages were raised gradually, but as quickly as possible, until at last he seemed comfortable. The day Joe became our patient I called the Pastoral Associate to the office to explain the special needs of this man and seek the best way to answer them. Because he was sensitive about his appearance I didn’t want people in the home unnecessarily, but a spiritual assessment needed to be made and his needs answered. When Veracame into my officethat day and heard about Joe she felt she should go and talk with Joe’s mother before a decision was made on how best to answer his spiritual needs. As I sat talking with her I wondered if she was ready for the challenge of this man’s appearance, anger, and communication problems. She seemed so young and peaceful that I hoped she could be spared this difficult situation until she had more experience. Well, Vera went and met with Mrs. Smith and then Joe. She continued to go regularly and provided support for the family and sat with Joe reading the Bible and praying withhim. For several weeks these visits continued and, as Joe worsened, her visits became more poignant. In the earlymorning hours of a late spring day Joe Smith died in his apartment, with his mother and sister present, approximately six-weeks after his admission into the hospice program.
The American Journal of Hospice & Palliative Care January/February 1992 Downloaded from ajh.sagepub.com at Glasgow University Library on June 27, 2015
In the days immediately prior to his death Mrs. Smith had spoken with the nurse about the need to make funeral plans. The nurse suggested to me that one ofourProtestant chaplains from the hospital work out arrangements with the family to conduct the service. Vera went to talk with the family and Mrs. Smith expressed the wish that Vera could do the service. Vera responded that she certainly could do the funeral and although she had never conducted a funeral service before, she would be honored to preside atJoe’s funeral. The young Pastoral Associate conducted the service and it was moving and meaningful. She shared with the mourners the following Psalm which Joe wrote shortly before his death: “Well, hereI am. .2 a.m. blues. Guess I best pray to God and see ill can Get a little more helpfrom Him. You know it’s so wonderful that He keeps Right on helping, asking nothing in return For all his help, support, and love. He is so wonderful and full of lovethat He never falters. He is so strong He carries The whole load and asks for only lovein return.” The Smith family came to the hospice memorial service shortly after Joe died. We remembered Joe and several other hospice patients. Mrs. Smith looked so much better than that first day! saw her. She seemedcontent. “Tonya, his death was so peaceful. He just slipped away. We must have stood there five minutes looking athim. Wejust couldn’t believe it.” We chatted a while longer and as she turned to leave she said, “Oh, yes, and that Vera—she’s an angel.”IJ .
5
The provision of spiritual care by hospice programs is largely unregulated. Many patients are not fonnally affiliated with a particular church or congregation. Yetthey often experience spiritual pain as they approach death. The job of the pastoral care-giver is to assist patients and families to achieve spiritual peace in this difficult time in life. This isthe story of one man’sjourney in hospice and the crucial role the pastoral care-giver played to ease the burden of the patient and family. The letter came in the morning mall with a check for $5.00: “I am not able to attend churchregularly any more, so I would like a part of my tithe to go to the people who helped me and myfamily so much—caring for my son, Joe. It won’t be much—maybe $5.00 a month or a little some times... God bless you in your work and my never ending
Tonya Manselle, MSW is Program Director at Mercy Hospice Care Program in Urbana, IIlinois.
thanks for the support you gave us in our time of need. In His Name, Myrtle Smith*.” The memories came rushing back of my first contact with Mrs. Smith over one-and-half years ago. It was a typical blustery March day in flhinois—not a hint of spring yet, only the hope based on the inevitability ofthe seasons. I wrappedmy coat tightly around me, reached for my hospice materials and paused a moment to reflect on the referral. A physician who rarely referred had called earlier inthe day asking me to see a patient he had “inherited by default.” Following months oftreatment in a large medical center nearby the man had returned home to his motherto die. The diagnosis was throat cancer. He had received radical neck surgery followed by extensive radiation treatments, which had left radiation burns. This was probably not going to be pretty. As I walked up to the subsidized high rise where mother and son now lived, I tried to imagine what my feelings would be if my son had come home to die. I rang the buzzer for the mother’s apartment and in a few minutes she appeared. She lookedtired and harassed. Obviously she had her own health problems because her legs and feet were badly swollen. She brushed aside my concern as unimportant right now and “besides what do you expect when you’re almost 80?” We went up to her apartment before going to her son’s so she could explain Joe to me.
“He may not let you in,” she cautioned. “Sometimes he gets mad and he acts mean.” “I would too,” I thought, “if I were dying a painful death in my 50’s.” I explained about our services—the home health nurse, home health aide, the volunteers, and the inpatient units with the private rooms. She nodded pleasantly and explained what a wonderful family she had and how all of Joe’s brothers and sisters were helping keep him at home and that there were only two things troubling them now. “His pain,” she said, “sometimes it’s just awful. Surely there’s something that will help.” I looked over his list of medications and knew that therewere other drugs more effective and assured her we would work on that problem until he was as painfree as possible. “Andtheother thing you need. What else can we do to help you and your son?” “Well, Joe kinda fell away from the church in his younger days and he’s led a pretty tough life as a carnival manon the road, but now I think he’s searching. He’ll ask me to pray for him and read scriptures but somehow I just don’t feel adequate to help. We’ve got a nice young minister that comes here to the building but, you know, he’s afraid of dying so I don’t want him. I sure don’t want anyone that’s going to try to preach to him. He needs comforting, not condemning. “Of course we’ll help,” I replied with more assurance than I felt. What a
*The name has been changedto protectprivacy.
The American Journal of Hospice & Paffiative Care January/February 1992
Downloaded from ajh.sagepub.com at Glasgow University Library on June 27, 2015
case to throw into the lap of our new Pastoral Associate who had never yet gone out of the hospital on a hospice call. Oh well, we could always refer this one to community clergy. After all this family was Protestant and our associate was Catholic and a woman to boot! We walked down the hallway to her son’s efficiency apartment and I wondered fleetingly howl wouldhandle things ifJoe refused to see me. Since surgery had ended his ability to speak, how would he be able to let me know if he wanted me to leave? The apartment was small, clean and sparsely furnished with a hospital bed and couch in the room. I noticed the odor when we walked in and realized it was not dirt, but what was it? “Joe, the hospice ladyis here. Can wecome in?” He was lying on the bed curled up in an attitude ofpain. I could see he was a tall manwho was wasted now. As he turned toward me I fought to keep my face impassive. The radiation had caused extensive facial bums and his lips were swollen to the size of sausages. The odor was coming from an open tumoron the side ofhisneck whichwas oozing bloody pus. His eyes blazed at me as ifdaring me to say ordo anything which might show my horror. “How do you do, Mr. Smith” I said as I extended my hand. “My name’s Tonya Manselle and I’m from hospice.” He continued to stare at me as I explained the hospice program and for the first time I fully realized how much we depend on those we’re speaking with to guide us verbally. He remained still and attentive and asked a few questions by writing them on a pad of paper. In a short time I left promising to callhis motherthe following day to see ifhe desired our services. Joe agreed to come into our program and we moved quickly to try to alleviate his pain. An appointment with ourMedical Director led to a change in medication and eventually the use of a
painpump. Problems with edema complicated medication dosage and restlessness dislodged the needle from the injection site once,but the home health
The job of the pastoral care-giver is to assist patients andfamilies to achieve spiritual peace in this difficult time in life. nurse continuedto go out and work on pain control. Dosages were raised gradually, but as quickly as possible, until at last he seemed comfortable. The day Joe became our patient I called the Pastoral Associate to the office to explain the special needs of this man and seek the best way to answer them. Because he was sensitive about his appearance I didn’t want people in the home unnecessarily, but a spiritual assessment needed to be made and his needs answered. When Veracame into my officethat day and heard about Joe she felt she should go and talk with Joe’s mother before a decision was made on how best to answer his spiritual needs. As I sat talking with her I wondered if she was ready for the challenge of this man’s appearance, anger, and communication problems. She seemed so young and peaceful that I hoped she could be spared this difficult situation until she had more experience. Well, Vera went and met with Mrs. Smith and then Joe. She continued to go regularly and provided support for the family and sat with Joe reading the Bible and praying withhim. For several weeks these visits continued and, as Joe worsened, her visits became more poignant. In the earlymorning hours of a late spring day Joe Smith died in his apartment, with his mother and sister present, approximately six-weeks after his admission into the hospice program.
The American Journal of Hospice & Palliative Care January/February 1992 Downloaded from ajh.sagepub.com at Glasgow University Library on June 27, 2015
In the days immediately prior to his death Mrs. Smith had spoken with the nurse about the need to make funeral plans. The nurse suggested to me that one ofourProtestant chaplains from the hospital work out arrangements with the family to conduct the service. Vera went to talk with the family and Mrs. Smith expressed the wish that Vera could do the service. Vera responded that she certainly could do the funeral and although she had never conducted a funeral service before, she would be honored to preside atJoe’s funeral. The young Pastoral Associate conducted the service and it was moving and meaningful. She shared with the mourners the following Psalm which Joe wrote shortly before his death: “Well, hereI am. .2 a.m. blues. Guess I best pray to God and see ill can Get a little more helpfrom Him. You know it’s so wonderful that He keeps Right on helping, asking nothing in return For all his help, support, and love. He is so wonderful and full of lovethat He never falters. He is so strong He carries The whole load and asks for only lovein return.” The Smith family came to the hospice memorial service shortly after Joe died. We remembered Joe and several other hospice patients. Mrs. Smith looked so much better than that first day! saw her. She seemedcontent. “Tonya, his death was so peaceful. He just slipped away. We must have stood there five minutes looking athim. Wejust couldn’t believe it.” We chatted a while longer and as she turned to leave she said, “Oh, yes, and that Vera—she’s an angel.”IJ .
5
