Friday, August 29, 2014

Hospice Journey Stories: Steps toward inner healing

Every hospice patient has a story. Some stories are riveting in their content, others are sad, others are an unveiling, yet others are illuminating. Take for instance, the story of the Army Veteran who was silent about his military career and why it was he earned the Purple Heart. He was tight lipped about the experience that caused him severe damage to his back. His sons wanted to know, actually needed to know for their own sense of closure. During a “We Honor Veterans” Salute ceremony this patient connected with the Salutes leader. The patient asked that his family leave his bedroom as he wanted to talk privately. The family left the room. The two sons left the bedroom door cracked enough so they could hear the conversation and they listened intently. Their father related to the Salutes leader that he was awarded the Purple Heart for his getting wounded while involved in a raid. The artillery fire was intense. A palm tree was hit and fell … pinning him to the ground, breaking his back. He urged his comrades to fight on and leave him. When the fighting had stopped his small group of soldiers returned for him. They loaded him on a small motorboat which took him out several miles to a large cruiser, but they had to bring him back to shore because the cruiser did not have the medical equipment to help him. They had to wait until a more sophisticated cruiser came to the location. The pain was excruciating as with every wave they bounced off of his back radiated pain throughout his body. Finally, he made it to the ship with the medical staff and equipment that could help him. He recovered for the most part, but had lingering effects from the broken back. He vowed never to talk about it … until now. His sons, both officers, entered the room weeping. They gingerly embraced their father and expressed their pride and love. Great story … moving story. Then, there is the religious story … Jane related her story of why she became a Wiccan. When she was a child, her mother would take her and her siblings to Sunday School and Church. Her father was not interested in church. There came a time when her father became gravely ill and died. After the funeral, several church people came to her and attempted to console her by saying “We are sorry your father went to hell.” That statement was emblazoned in her mind and she said it as if it happened just the other day. She then related that she never went to that church again, but as she grew older, she began a spiritual quest for a religious system that did not hold to the beliefs of heaven and hell. She discovered Wicca and that is the why behind the what. Painful story to listen to. Then, there is the story of the committed grandfather who became deeply depressed as his journey through hospice and the disease process began to sap him of his strength to the point he was in need of walker, then a wheelchair. This Chaplain was present after both were delivered to his home. He sat dejected in his recliner and pulled back the curtain on his life. He was always active, not athletically, but physically active. He never needed nor would ask for help. He walked vigorously, lifted a few weights, always got out and about. Until the other day … He drove (something he shouldn’t have done in his condition, but something he fought giving up) to a grocery store, got out of his care, and promptly fell to pavement. He was unable to get up and crawled to a place where people could see him and help him to a bench. His daughter came to pick him after he called her. The daughter and her emotionally damaged Dad talked to the nurse about the event and then came the news that drove him to the ground figuratively with a force unlike the fall he just had: “I’ll order a walker for you to use around here and a wheelchair for when your daughter takes you to the store or other places.” What a kind way of saying, “No more driving.” His world had just shrunk from wherever he wanted to go, to the size of home. He was depressed. At that time a movie came out called, The Bucket List. The patient mentioned that the things in that movie were things he had no interest in doing, but he wanted to do a few things. One of those things had to do with his granddaughters who he took on trips around the world, individual trips around the world, that is. This conversation led to all of the slides he had of the places and experiences with each of his grandchildren. [For the more contemporary of our readers, a slide is like a piece of cellulose with a negative of the picture on it … no iPhones back then] Fast forward to Christmas Eve … I entered his home and was overwhelmed at what I saw. Slides were strewn on floor amid the granddaughters and their parents as they held the slides up to the sun and laughed and shared all the fun of their trips. All the while, my Patient sat in his easy chair as if presiding over one of the greatest meetings in the history of the world. His depression had dissipated and melted into sheer pride and utter delight. He did well by his family. He was engulfed in their love. He later died a contented man. Yes, stories do much for hospice patients. They get the poison out. They get the sorrow, the disappointment, the pain out. The also multiply the joy, the peace, the serenity. More on stories to come.

Thursday, August 28, 2014

A Caregiver’s Story: Getting Into a Dementia Patient’s Head

[From time to time, I read articles that are so profound, they must be shared here. I trust you will be inspired by this article about a caregiver who provided her dementia stricken father through his journey into dementia. I found this article on this site:] Dad was adamant. He was waiting for his medical degree to come from the University of Minnesota and wondered why it was taking so long. I did what I usually did, and waited a few days to see if this episode of delusion thinking would pass. It did not. So, I went to my computer and designed a medical degree with my dad's name on it, scribbled some "signatures" on the bottom, put it in a mailing envelope and brought it to him, in the nursing home, the following day. He was delighted. I added it to the other awards and degrees hanging on the wall; the entomology "degree," his legitimate college degree, some other earned awards, an "award" for helping direct Lawrence Welk's band. The wall was cluttered with the real and the fake, but I knew I would need to find room for more. Dad's brain would tell him he had earned something and eventually I would need to produce it. Dad had, indeed, gone to medical school at the University of Minnesota, but that was before World War II. He took some time off to be an archaeologist and then the war broke out. During maneuvers in the Mohave Desert, Dad passed out from the heat. He smacked his head against the baked desert floor and sustained a closed head injury. He was in a coma for months and had to learn to walk and talk again. He succeeded, and stayed in the army until the war ended, but kept Stateside and trained as a sanitarian. Dad became director of Sanitation for the city of Fargo, meanwhile raising a family and, like so many returning soldiers, he went back to school. He attended school at night and worked during the day. I remember going to his college graduation. I was 14. Dad continued taking any graduate classes that would help his work or simply because they interested him, and he became very successful in the world of public health. As Dad aged, fluid started building up behind the scar tissue in his brain. He had surgery to drain that fluid, but the surgery backfired and he came out of it with severe dementia – and bonded with a voice in his head we came to call Herman. That is when reality changed for all of us. Dad moved to a wonderful nursing home, a block from my house, and for the first few years, my mom was still able to live at home, so I'd take her each day to see him (eventually, my mother entered the same nursing home). Everyone in the family wanted to help Dad, but I was the only one who could really get into his head and be who he wanted and get what he wanted. I was his office manager. I brought him his brief case. I made a graphic letter head for him, and made him business cards. I took dictation. I mailed letters, and "received" letters – and of course – made degrees and awards. What Dad could remember was attending medical school at the U of M. Why wouldn't he have a degree, then? He watched Lawrence Welk on public television. I even bought him a baton because he wanted to direct the band. Why wouldn't he have an award for that? One day, a couple of years into this saga, a psychiatrist caught wind of what I was doing. He chewed me out royally. I was supposed to ground Dad. Bring him back to reality. Redirect him. I had no business playing Dad's game. Hogwash, I thought. I know my dad. I know he is not capable of coming into my "reality" and I wasn't going to torture him by trying to drag him along. If I argued that he was delusional, he would feel degraded and disrespected. It made no sense to me. I still had my brain. Why couldn't I put his anxiety to rest by traveling into his world – his "reality"? The funny thing is, a few years later, a different psychiatrist stood looking at Dad's award and degree covered wall. A nurse stood next to him. "I didn't know he was a doctor," the doctor said. "He's not," the nurse said, with a grin. The doctor burst out laughing. Later he asked me where I learned my "technique." "I'm his daughter," I said. That's all I needed. Now there is an actual theory about this called "validation theory." It makes me smile. I didn't need a theory to know what Dad needed. I just needed love. Validation is exactly what Dad needed, because what was real to him was real in his world. Yes there were times when I would try to explain true reality, but I chose my battles wisely. I tried to keep him from seeing television news because he would insist that the war going on (there's always a war going on somewhere) was in our town, right outside his window. I'd try to get him to walk to the window with me, but no, he knew the war was outside and I shouldn't belittle him by saying it wasn't. Okay, I wasn't going to "play his game" and say, "Sure Dad, there's a war outside and they will blow us up anytime." If I couldn't convince him of the reality that we were in a "safe zone," so to speak, I would calmly say, "I'm sorry you can't believe me, but we are okay. We'll talk about it another time." Usually, these things happened when he was having a particularly bad day, and we'd just have to weather it. However, the rest of the time, I'd just agree with him. What did it hurt that he thought he was helping plan the new zoo in Fargo, including finding an elephant? It kept him busy. What did it hurt that he needed to study "Grey's Anatomy?" I found a copy in the used book store. What did it hurt that he needed a copy of "Roberts Rules of Order"? I found that, after a search, online. My point is this: Dad's reality was as real to him as mine is to me. Why should I, who supposedly can use my brain, make his life miserable by continually telling him he is wrong, when going with the flow was not hurting anyone else, and it was making Dad's life a little more bearable? Why would I not do what I could to help him have some feeling of accomplishment? I'm his daughter. He would have done as much for me.

Wednesday, August 27, 2014

Lest We Forget …

The life and work of Dame Cicely Saunders, the founder of the modern hospice movement, was memorable for many reasons. She was tenacious in her desire to provide end-of-life care. Take for example, her determination to be heard and to be a voice for the helpless. “Compelled by her mission, she volunteered at St. Joseph's Hospice in London. Because the patients were perceived as beyond help, the nuns didn’t stick to pain control guidelines. Saunders learned to administer morphine before pain appeared, thus staying ahead of the pain. This would later influence her ideas about pain management and treatment. Saunders conceived of giving patients a regular pain control schedule, which, in her words, “was like waving a wand over the situation.” Her surgeon friend advised Saunders that if she were dedicated to pain management and caring for the terminally ill, people wouldn’t listen to a nurse. So, at the age of 33, at a time when there were few women doctors, she studied to be a physician. When she earned her medical degree in 1957 she became the first modern doctor to devote her career to dying patients. While still working at St. Joseph’s, she met the second Pole in her life, 60-year old Antoni Michniewicz. He inspired her to name her own hospice for people in the final stage of life’s journey. He suggested she name it after the patron saint of travelers, St. Christopher. It would take her another ten years to open St. Christopher’s Hospice, the world's first modern hospice. And she’d spend more than 50 years trying to humanize the dying experience for patients and their families.” ( In addition to dogged determination, was a sense of deep internal reflection which prompted her to coin the term, “total pain.” This included physical, emotional, social, and spiritual elements. She focused on caring for the whole person and enfolding their family and friends within that care. This led to the development of a new medical specialty, palliative care, and modern hospice philosophy. Chaplains were always a part of her care team. Now, here we are in 2014, some 30+ years into the hospice movement. Some have called it a hospice “industry”. Those of us committed to the spirit of the hospice movement must never allow the new normal to eradicate the pioneering and compassionate approach of our founder, Dr. Cicely Saunders.

Tuesday, August 26, 2014

Blessing Others (a wonderfully inspirational story)

Blessing Others Chuck Watson, Hospice Volunteer spoke these words to over 1000 people at the 2007 Annual "Lighting the Path" breakfast. During a recent Sunday service at 1st Baptist Church of Kennewick, Pastor Phil Paulson displayed a picture of a grave. The headstone on this grave was a replica of a parking meter. On the face of this “parking meter” were the words, “TIME EXPIRED.” The question presented was, “Would it make a difference if you knew in advance when your time would expire? Would you change your behavior? Your focus? Your priorities?” If you had a choice, would you want to know in advance that your time was about to expire, or would you rather it happened suddenly and not see it coming? Mary Schwartz, in Tuesday’s With Maury, once said, “Everybody knows they’re going to die, but nobody believes it.” This pretty much described me; that is until the results of a routine physical a few years ago turned my world upside down. I was diagnosed with an incurable stage of cancer. I suddenly found myself face-to-face with the certainty of my own impending death. Before this cancer experience I believed if I was to die I’d rather have it happen suddenly—unexpectedly. I’ve changed my mind. I’d rather know death was coming. You see, this cancer has been a blessing in many ways. The greatest of these has been the gift of time. It’s given me the time to fall in love with my family all over again, time to get my finances in order, time to make amends, time to develop a relationship with God, which has made the difference, and time to come to terms with death. Bette Cooper, the Executive Director of The Chaplaincy earlier mentioned that Each of us involved with The Chaplaincy has come with our own story. I became involved because I was afraid - afraid of dying. Previously I had discovered that the best way to control fear was to face it, even to step into it. With this in mind, I began researching death and dying. During this process I was introduced to the concept of Hospice and began to feel an inner urge to volunteer. I attempted to ignore this urge. How could watching someone die not frighten me more? But the urge to become involved wouldn’t let go! Eventually, I gave in and became a Hospice volunteer and oh, how grateful I am! I’ve had the privilege of providing companionship and support for people during their last days, and in this process they, unexpectedly, have been some of my greatest teachers. My cancer prognosis seemed to allow a unique “kindred spirit” relationship to quickly develop with some. Not only was I able (hopefully) to provide companionship and support for them, they seemed lifted by the realization of a renewed purpose in helping me. I wish everyone could experience the power of deep, unguarded, sharing of the soul I’ve had in these encounters. There is so much courage to be found, fears to be lost, and lessons to be learned. Through these discussions I’ve found a tendency to focus on three primary things. 1. What’s next? The power of God is very evident here. Those who have faith seem to find a peace where others struggle. 2. Will my family be OK? Often, permission to let go is needed from the family, along with reassurance that loved ones will be OK, sad, but OK. 3. Was I significant in this life? This is a time of deep personal reflection on how they lived their life. Even those of little or no faith are hit with the importance of relationships. There is pain in unresolved conflicts with loved ones, and a tendency for regret in self-serving life. One of the greatest of these teachers was a former Kennewick dentist, dying of Lou Gehrig’s disease. During one of our visits he said, “You know, I regret the times when my priorities were money, building my business, the big house, cars and vacations...I became so caught up in myself and ‘success’ that I lost my first family. I was selfish.” When asked what he felt good about, “The fact that I found God changed everything. With God’s grace I found a new family...I feel good about the times I helped people without expecting something in return. That’s what it’s all about you know. It’s about reaching OUT TO God and other people. I only wish I would have learned this earlier.” I’ve learned that what’s important in this life is not what many of us strive for through power, position, or possessions. It’s not about how much you’ve gained that’s important; it’s about how much you gave. It’s not how well you were served, its how well you served. My hospice experience has been a Godsend. My original motive was to learn about dying, and in the process, I learned about living. Someone once said, “Success is measured by the lives you’ve touched along the way.” My experience with hospice and these wonderful people has driven this message home. I’m convinced God has blessed me with this entire experience. My responsibility and desire now is to use it to bless others. [posted in]

Monday, August 25, 2014

Inspiration and encouragement for the Chaplain

You are called to sway the balance. Everyday you will witness uncaring and unjust healthcare delivery, and you must sometimes be like the rose in the desert. There is a beautiful passage in the book of Isaiah, chapter 35, verse 1, “The desert shall rejoice and blossom like a rose.” Let your ministry be guided by this idea. Patients and families experience many deserts, burning deserts, scorching deserts that leave them empty of meaning, empty of content, empty of substance. Help them to sing Hallelujah in a new key, and to be witnesses to the transforming power of love. When you are in the desert, plant a rose. You will face obstacles and lots of them! No, good things do not always happen to good people, contrary to the best-selling book title. That is much too simple. Do not expect things to be easy! No, you will not always be rightly valued. Sometimes you will be rejected and scorned. But when you succeed, as you will, the place where you minster will have come to acknowledge your depth of connection, your wisdom, and your ability to communicate with patients and families at the deeper levels of ultimate meaning. So plant a rose of peace, a rose of reconciliation, a rose of faith, hope and love. And the desert will blossom. Clinicians will blossom, patients will blossom, whole hospitals will blossom, and you will blossom, even bioethicists will blossom. And as the Psalm reads, “Those who refresh others will themselves be refreshed.” It will not be easy, and not everyone will sing your praises or attend your funerals, but nevertheless, as St. Paul wrote, “God loves a cheerful giver.” Never forget that the affirmation of the patient’s significance is profoundly important in times of severe illness. In the words of e.e. cummings: “We do not believe in ourselves until someone reveals that something deep inside us is valuable, worth listening to, worthy of our trust, sacred to our touch." What a marvelous encouragement to Chaplains both new and seasoned. This speech was given by Stephen G. Post, Ph.D., a bestselling author of The Hidden Gifts of Helping: How the Power of Giving, Compassion, and Hope Can Get Us Through Hard Times. Post is professor of preventive medicine, head of the Division of Medicine in Society, and director of the Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University. He was previously professor of Bioethics, Religion and Philosophy, School of Medicine, Case Western Reserve University, and senior research scholar at the Becket Institute of St. Hugh's College, Oxford University. Post is a senior fellow in the Center for the Study of Law and Religion at Emory University. Published June 20, 2012, Vol. 9, No. 10, in PlainViews® a publication of HealthCare Chaplaincy Network™.

"... that is a friend who cares."

“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” - Henri J.M. Nouwen, The Road to Daybreak: A Spiritual Journey

Standards of Practice for Professional Chaplain in Hospice and Palliative Care—Part 3

Section 3 of the Standards of Practice is critical to growth and chaplaincy development. It would be fairly easy for a hospice Chaplain who is busy meeting the needs of his or her caseload to fall into a rut of foregoing reading and personal growth. This particular Section reminds the Chaplain that the goal is competent Chaplaincy care. There is no such thing as a one size fits all type of hospice chaplaincy. Because of the diversity in hospice chaplaincy, continuing education related to culture, religion, family dynamics, counseling, disease process, medical terminology, research processes, personal devotion and spiritual growth, and contemporary application of Chaplaincy interventions are but a few of the arenas the hospice Chaplain will find enriching and instructional. Section 3 reads as follows: Section 3: Maintaining Competent Chaplaincy Care Standard 11, Continuous Quality Improvement: The chaplain seeks and creates opportunities to enhance the quality of chaplaincy practice. Standard 12, Research: The chaplain practices evidence-based care, including ongoing evaluation of new practices, and, when appropriate, contributes to or conducts research. Standard 13, Knowledge and Continuing Education: The chaplain takes responsibility for continued professional development. The chaplain demonstrates a working knowledge of current theory and practice. There are three words in Section 3 that encompass a great deal of hospice chaplaincy and that inform my ministry. These words are: quality, practice, and responsibility. At Cornerstone Hospice, I wrote the Chaplain handbook and titled it, “Toward Excellence in Spiritual Care.” I specifically used the phrasing “toward excellence” as ‘toward’ infers movement in the direction of. Stale and obligatory chaplaincy won’t work … ever. The hospice Chaplain is committed to quality in spiritual/pastoral care. This is our calling and this calling demands the best the Chaplain can provide. ‘Practice’ suggests to me that hospice Chaplaincy is as much art as it is science. There are nuances to care such as how we listen, how we deliver care, the language we use, the demeanor we portray, the tone of voice, the facial expressions, the body language, the way we identify with patients and family members/caregivers. Practice also suggests growth in ability to deliver evidence-based care. One day the light will come on and the Chaplain recognizes that for all those years she was actually delivering evidenced-based care, it just wasn’t called that. That yes, the “expected outcome” was relief of anxiety; or reconciliation with a sibling, family, faith community; and so on as spiritual concerns were identified and outcomes established. 'Responsibility' identifies who it is that bears accountability for progress. It is the individual Chaplain who determines how far he or she will go in growth and development. I can only speak for myself when I say that there is no economic remuneration enough to cause me to read, to study, to write, to teach, to 'become' my best in hospice chaplaincy. The demands of the profession require no less than my best effort regardless of economic benefit. Not everyone shares that opinion and that is fine. Patients and families will be the direct beneficiary of any Chaplain's maturing in the profession. It seems worth it for that reason alone. Section 3 is the crux of the issue as it focuses on application of theory and practice. A Chaplain who is growing and developing chaplaincy skills is a huge benefit to any patient and family in hospice care.

Thursday, August 21, 2014

Standards of Practice for Professional Chaplains in Hospice and Palliative Care Part 2

My method for commenting on this section of the Standards of Care will be to follow the Standard with comments in italics. I am grateful that this Standard has come out and was accepted recently. Further, it must be noted that the arena of chaplaincy that has grown the most in recent years has been that of hospice chaplaincy. In my opinion what will elevate hospice chaplaincy to a more credible level of recognition is the requirement of not only an MDiv. or similar Master’s degree, but also, the requirement of 4 units of Clinical Pastoral Education and Board Certification from one of the major certifying bodies. The work of the hospice Chaplain is challenging as end-of-life issues are complicated. Chaplains engage patients for up to a year or more or for just a few days. Managing the relational aspect of spiritual care requires a highly competent Chaplain. My bias is obvious. But, I don’t apologize. Patients and family caregivers need the best we can offer. The crucible of CPE and the experience of Board Certification develop mettle in the life of the Chaplain that serves patients and caregivers well in the hospice dynamic. Section 1: Chaplaincy Care with Patients and Families Standard 1, Assessment: The chaplain gathers and evaluates relevant data pertinent to the patient’s situation and/or bio-psycho-social-spiritual/religious health. Through use of the Spiritual Plan of Care, the Chaplain addresses many issues in his initial and subsequent assessments. The Chaplain identifies a Spiritual Concern then works with the patient and caregiver to negotiate what it is that they desire as an Outcome or Goal of Care. From there, the Chaplain wisely uses Interventions to attempt to meet that Outcome. This is just the beginning of the clinical aspect of hospice chaplaincy. Standard 2, Delivery of Care: The chaplain develops and implements a plan of care to promote patient well-being and continuity of care. The initial assessment creates the Plan of Care. While the Chaplain has some direction as to what the patient desires for an Outcome, she moves toward that goal at the behest of the patient. In other words the Chaplain serves the agenda of the patient, not vice versa. There will be those visits in which the patient just needs to talk … about anything else but spiritual matters … and that is ok. The entire goal is patient well-being. Counter-transference issues can cause a Chaplain to be anxious and that anxiety has a way of spilling into the pastoral encounter and, in so doing, skew the conversation away from the agenda of the patient. A Chaplain who is self-aware will carefully guard against this. There is no such thing as “I have to talk about this or that or the other” in hospice chaplaincy. A calm demeanor is what the successful Chaplain brings to the visit. Standard 3, Access to Information and Documentation of Care: The chaplain, as member of the interdisciplinary team, assesses and enters information pertinent to the patient’s medical record that is relevant to the patient’s medical, psycho-social and spiritual/religious goals of care. Gone are the days of paper documentation. The Chaplain must have computer skills. Documenting in the agency’s computer program, be it Solutions or Allscripts or another program, is simply an expectation. What is vital to the Chaplain is to memorialize not only the progress toward Outcomes, but also, observations of pain and decline. The Big MAC is a key element in observing decline. It is simple to use in concept and design. Please refer to my post published on 8/1/2014 for a review of the MAC. Standard 4, Teamwork and Collaboration: Team is an essential component of both hospice and palliative care, and the chaplain is a fully integrated member of the interdisciplinary team. The Chaplain has a seat at the table where patient issues are discussed. It is expected that the Chaplain will participate and function in a professional manner along with her colleagues. The Chaplain is expected to engage the IDT to provide support and encouragement. In my career it has been a privilege to conduct weddings, funerals, and other pastoral care support for my Teams. The influence a Chaplain can have on the IDT is invaluable. Standard 5, Ethical Practice: The chaplain will adhere to the Common Code of Ethics, which guides decision making and professional behavior. It is expected that the Chaplain holds the highest of ethical values and lives them out in his work. Standard 6, Confidentiality: The chaplain respects the confidentiality of information from all sources, including the patient/family members, medical record, interdisciplinary team members, larger health care team and local faith community members, in accordance with federal and state laws, regulations, and rules. HPPA guidelines are strict. Carelessness in handling confidential information could cost the Chaplain his/her position and include a hefty fine. Standard 7, Respect for Diversity: The chaplain models and collaborates with the organization and its interdisciplinary team in respecting and providing culturally, psycho-socially and spiritual/religiously competent patient- and family-centered care. The Chaplain is a leader in educating the IDT regarding other belief systems and how those beliefs impact the congregant at end of life. At Cornerstone Hospice, I provided education regarding “Caring for Jewish Hospice Patients” as part of our accreditation requirements. The study was embraced by the IDTs and by many other clinical staff that attended. In hospice care, a clinician for any discipline will engage patients from various ethnic, religious, and cultural backgrounds and do so without regard to those backgrounds. Time and again I have heard of the excellent care given to a patient and family and the theme is the same… “You treated us right.” It is hoped that as we progress through the Standards that we will recognize what great value the hospice Chaplain is to the IDT and the agency in total. There are high expectations, for certain, but look around, there are high expectations for the physicians, nurses, social workers, CNAs, volunteer specialist, and bereavement counselors. And, that is what makes hospice the great service that it is.

Tuesday, August 19, 2014

A Case for Board Certification

Having gone through 2 certification processes, I think I can make a good case for hospice Chaplains being Board Certified. What does it mean, Board Certification? In a nutshell, having Board Certification means: 1. A Chaplain has successfully completed 1,600 supervised hours of classroom and clinical work. 2. A Chaplain has presented him/herself to a Certification Committee after 2,000 hours of work as a hospice Chaplain. 3. A Chaplain has completed the grueling work of writing responses to 27 Pastoral Competencies and successfully defending those responses in front of the Committee. 4. The Board Certified Chaplain has accomplished a task that few other hospice Chaplains have attained. Does Board Certification make the Chaplain a better Chaplain than those who are not Board Certified? Not necessarily, but it does give the Chaplain a broader sense of the issues surrounding hospice and palliative care and depth of understanding of those issues. Recently, I was asked by the Special Interest Group at the Association of Professional Chaplains to complete a survey from the Joint Commission. I was to comment on their proposed Palliative Care Certification Requirements. One of the proposals had to do with the Chaplain being part of the Interdisciplinary Team. The qualifier to the Chaplain had to do with Board Certification or being Board eligible. Being Board Eligible has to do with the Chaplain completing 4 units of Clinical Pastoral Education, but not appearing before a Certification Committee. It is my deepest hope that hospice Chaplains who are Board Eligible will complete their work on the 27 Pastoral Competencies with APC or will seek Board Certification through the College of Pastoral Supervision and Psychotherapy. Both certifying bodies are extremely competent and will position the Chaplain to accomplish great things in the great work of chaplaincy. It is my opinion that it won’t be too far down the road before the Joint Commission is going to recommend that all hospice Chaplains be Board Certified. This is a new day in healthcare. Chaplains of all types in healthcare must attain the highest for the needs of patients. It is also hoped that hospice agencies will recognize the value of Board Certified Chaplains and seek to make this a requirement for Chaplain candidates.

Monday, August 18, 2014

Standards of Practice for Professional Chaplains in Hospice and Palliative Care Part 1

For the next several days we will look at the Standards of Practice for Chaplains in the hospice and palliative care setting. It is the opinion of this writer that it is timely that these Standards were compiled giving credibility to the work of the hospice Chaplain. As I review history, Standards of Practice seemed to follow some type of crisis in spiritual care or lack thereof. In the 1940’s the Rev. Russell L. Dicks gathered a committee and formulated a set of Standards for hospital Chaplains. Why was this necessary? According to his correspondence: "It has come to the attention of the American Protestant Hospital Association that the spiritual needs of many patients, both in private and public institutions, are not receiving proper attention. In some instances patients are not receiving any spiritual care, in others they are receiving altogether too much.” There was a need presented and a need met through collaborative efforts. With thankfulness, I embrace the Standards of Practice for Hospice and Palliative Care Chaplaincy (compiled by the Association of Professional Chaplains, through whom I am Board Certified). For today’s thought we will look only at the Preamble. It is rich in truth and practicality: Chaplaincy care is grounded in initiating, developing, and deepening a mutual and empathic relationship with patients, families and staff. The development of genuine relationships is at the core of chaplaincy care and underpins, even enables all the dimensions of chaplaincy care to occur. It is assumed that all of these Standards are addressed within the context of such relationships. While the fields of hospice and palliative care differ, it is recognized that both specialties of care are on a continuum that is complementary and collaborative. These Standards of Practice incorporate both the distinctions and the similarities of chaplaincy care within each specialty. The trajectory of hospice spiritual care flies high based upon the relationship the Chaplain is able to build and maintain with the patient and family. In this writer’s experience, it matters little that I share a similar faith background with the patients I am serving. What they have to see is sincerity and compassion in me. There is a beautiful word picture in the etymology of the word ‘sincere.’ Sincere is a compound Latin word: sin=without; cere=wax. The concept goes to the days and times when in the agora a dishonest merchant would attempt to sell a cracked earthenware pot by melting wax in the crack and then when the painting and finishing of the pot was complete, it looked like any other pot. The truth would come out when the pot held its first meal and dripped all over the fire when heated. For the hospice Chaplain looking all neat and professional, the sincerity will reveal itself in the confines of the crisis. "No wax" means effective chaplaincy. That’s our goal … a “no wax” chaplaincy that is effective. The actual Standards will help us define the term “effective.” More to come ….

Thursday, August 14, 2014

Hospice Chaplain Ponders Lessons Learned from Survivors

There has been much attention paid to suicide these days following the untimely death of Robin Williams. Our hearts go out to his family and friends. If you or a loved one is struggling with deep depression, please call 1-800-273-8255. Please talk it out. You are special and you matter. What follows is a poignant article written about a hospice chaplain as he deals with survivors of a suicide. In Grief, Stigma on January 24, 2009 at 12:07 pm ORIGINAL COLUMN — Ted Swann, a chaplain for Burke Hospice & Palliative Care of Valdese, N.C., writes in a column for the Morganton News Herald, “In my opinion, death by suicide is the most complicated grief to deal with.” There are no goodbyes … Once, I facilitated a support group for suicide survivors … [in which] the group of six widows ITAL taught me. I was a good listener. Once they felt safe with one another they shared deep feelings, frustrations, anger and disappointments. Swann says he learned several important lessons from listening to the members of that support group: People don’t want to talk about suicide. It’s a different grief … There are at least these three reasons we don’t talk about it: The stigma — What do you feel when people whisper behind your back? … If you don’t know what to say, just be there for your friend. He/she is hurting and is an unfortunate victim … It’s too painful — It’s a sudden, violent death. There’s no gentle way to die by suicide … It is excruciatingly painful, but communication is vital … Theological beliefs — Many Christian churches, and individual members of them, are divided on this question. Personally, I want to look at all of a person’s life, not just the last 60 seconds. I accept the belief that the God of grace encompasses all of life. Swann also makes several observations about the “feelings of anger, guilt and shame” that the support group members shared with one another. Wrongly, we think, someone is responsible. This is more common with a suicide death than with other illnesses. This is an important quotation: “The other day I heard the father of a boy who had committed suicide say, ‘Everyone has a skeleton in their closet. But the person who kills themselves leaves their skeleton in another’s closet.” Each loved one wracks their mind and tears the heart questioning, “What could I have done to prevent this?” In the end, he shares his opinion: The suicide survivors, wounded healers, are the best therapists for each other. Together they work through feelings of shame and guilt. And he offers some excellent advice: A good rule to follow: As we meet people each day, let our kindness and caring be intentional. After all, we don’t know what just happened in their lives. “In response to all He has done for us let us outdo each other in being helpful and kind to each other and in doing good” (Living Bible — Hebrews 10:24). Isn’t it time we talked? I have a friend who is a whittler. The finest I’ve known. He and I made a covenant that if the time comes, we will say to each other, “Isn’t it time we talked?”

Tribute to a Hospice Nurse

When it comes to death and dying There's a special gift you share One that Angels all admire One that goes beyond just care It's a gift of deep commitment One that eases pain and fear And alleviates the sorrow When the hour of death is near Yet this gift is more than comfort More than nursing at its best For it cradles every patient Right up till their last request In this gift you give compassion Wrapped in dignity and love And in honor of your calling There's a tribute found above As a tribute to your Nursing All the care that you bestow High above this earthly planet Hangs a Hospice Nurse Rainbow And this rainbow graces Heaven A reminder of your goals "End-of-life-care" you excel at It's your gift to human souls To the soul of every patient Every brother, Mom and Dad Every household member present Every heart that's feeling sad To alleviate this sadness That engulfs a grieving heart Counseling and intervention Set your Nursing skills apart So within the skies of Heaven Bows of silver dangle high On a rainbow made of glory That makes every Angel sigh And upon each bow of silver There appears a nurse's name As an everlasting tribute For the Heavens to proclaim. © copyrighted 2007 "Angel of Mercy Collection" by E.V. Stankowski RN This poem goes great with a "Nurse Appreciation Week/Month/Day" recognition. Hospice Chaplains are the ones to bring this to pass. Bless you Chaplains!

Tuesday, August 12, 2014

Something to think about from Dear Abby

Dear Abby: During Mom's and Dad's funerals, I was dismayed at the degree of tension and bickering among us. I am now dealing with an incurable illness that will shorten my life considerably. I have no desire to put my husband through a funeral hosting a family who never liked him. I prefer to be cremated, and a handwritten letter be sent to each of my siblings after the fact. Is this selfish? I don't want people saying things they don't sincerely mean. I didn't have a happy childhood, and my siblings contributed to that. My letter will not be accusatory, nor will it rake up long-ago hurts. I just want them to know that my husband has carried out my wishes and they should not blame him for doing so. Any thoughts? -- KEEPING IT SIMPLE

Empathetic Listening

It was the annual conference of the National Institute for Jewish Hospice in 2013. I sat there in rapt attention as Rabbi Maurice Lamm gave the opening address. His speech started out like this: “My Friends, do not tell me you have empathy. Show me you have empathy. Empathy is something you do, not something you talk about.” What a powerful statement! Carl Rogers gives us instruction through these statements on empathetic listening: “We think we listen, but very rarely do we listen with real understanding, true empathy. Yet listening of this very special kind is one of the most potent forces for change that I know.” In Experiences in Communication, Rogers goes on to say “I hear the words, the thoughts, the feeling tones, the personal meaning, even the meaning that is below the conscious intent of the speaker. Sometimes too, in a message which superficially is not very important, I hear a deep human cry that lies buried and unknown far below the surface of the person. So I have learned to ask myself, can I hear the sounds and sense the shape of this other person's inner world? Can I resonate to what he is saying so deeply that I sense the meanings he is afraid of, yet would like to communicate, as well as those he knows?” Are those not questions we need ask ourselves as Chaplains? There is much to be said about empathetic listening. Let’s start with the basics: Empathetic listening helps people feel heard and not alone. What is the cry of the heart that is fearful, anxious, distracted? Is it not for someone to listen with interest? with concern? with compassion? Secondly, empathetic listening involves many skills and components: relaxed yet engaged body posture; eye contact (when culturally appropriate), reassuring touch (when culturally appropriate), listening beyond or beneath the literal words said by a person to the deeper emotions, meaning, and needs. What may seem contradictory, empathetic listening may also ask you to laugh, be joyous, and not focus on illness, pain, or dying. After all, it is the patient or caregiver we are listening to. They are our focus. And the results? In this day of outcomes oriented chaplaincy we need to be clear on the benefits of empathetic listening: Fear, anxiety, despair, and even physical pain frequently diminish when the person feels heard, understood, and accepted. Personhood, self-worth, and dignity are affirmed. Feelings of isolation decrease. Persons find their own answers in the new milieu of affirmation. Ah, the worth of the hospice Chaplain! Amazing ministry it is!

Friday, August 8, 2014

My Inheritance

Hospice Chaplains are instrumental in working with patients who, at the end of their lives, recognize that there are those they need to forgive or who need forgiveness. As I review my own work as a Chaplain, this was a common theme. From seeking forgiveness from family members to seeking forgiveness from a neighbor, these encounters are usually blended with regret and then relief when forgiveness is granted. I came across an inspiring story on written by Joseph J. Mazzella, on August 5, 2014, that highlights the concept of forgiveness, love and faith. The title of the piece is “My Inheritance.” I turned on the television as I made my breakfast this morning. The commentator was going on and on about a family's bitter fight over a dead celebrity's estate. I shook my head and turned off the TV. I went back to my breakfast and ate in silence. I thought of my own inheritance. Mom, Dad, and Nana are all in Heaven now. They didn't leave me any mansions, millions, stock, bonds, planes, or yachts. What they left me was far more valuable. My Nana left me a recipe for homemade spaghetti sauce that fills the stomach and comforts the soul. My Dad left me his short stature and thinning hair so I wouldn't take my appearance too seriously. My Mom left me her slightly crooked chin, unique smile, and love of laughter. My Nana left me her hugs and kisses and the desire to share them often. My Dad left me his silent strength in the face of trouble so I could grow better during the hard times of life. My Mom left me her love of reading and the encouragement to write as well. All three of them gave me the gift of forgiveness when I messed up. They gave me their love and support to become who I wanted to be. They gave me a love of animals, an awe of nature, a reverence for life, and an appreciation of family. They all showed me too a courage and faith when facing death. They left me all this and so much more. A thousand books couldn't contain it all. That is my inheritance and I wouldn't trade it for a hundred billion dollars. My Mom, Dad, and Nana also helped me to open my heart to an even greater inheritance, the inheritance that our Heavenly Father gives us all. We are all born with a heart made for loving, a soul built for kindness, and a mind designed for goodness. We are all called to share this inheritance too with everyone everywhere. God loves us all. We are all His Children. We are heirs to Heaven and we are here to bring Heaven to Earth. May we all do so. Perhaps you have a story from you hospice chaplaincy that highlights forgiveness, love, and faith. We would all love to hear it.

Thursday, August 7, 2014

Pediatric Hospice Spiritual Care

I selected the topic of pediatric hospice care for today’s blog post because it caused me to reflect on my beliefs, my faith, my values, and my self-care. Pediatric hospice care, for me, is the most challenging, yet most rewarding specialty in hospice. “Most Americans think of hospices as facilities offering inpatient care to terminally ill adults. ‘But hospice is really a philosophy of care given in all sorts of different settings: the home, the hospital, a nursing home,’ says Pediatric Hospice Nurse Sue Huff, a veteran pediatric nurse who since 1998 has headed one of the country's leading children's hospice programs, Essential Care, in Cheektowaga, N.Y. ‘It's a philosophy of holistic care that takes a patient, whether a child or an adult, and treats not only the medical aspect of their life-threatening illness but everything about them as a person, including how they want to live with what time they have.’” (People, November 13, 2000 Vol.54 No. 20, “Comforts of Home”) My thoughts travel to the young couple whose child was born with a condition that would take her life within a month. My visits with them were filled with listening and loving them as they journeyed with their little one. Holding their baby was an honor. When the child went to heaven, they were resolute, yet very disappointed. Hopes and dreams for their daughter were dashed. Then, there was the spunky 4 year old who had a disease I cannot pronounce let alone write. All I know is that the disease covered her body with painful blisters. Mom and Dad needed me as much as “Spunky” (name changed). They were transplants to Florida from the north. Life for them was difficult, not only because of the terminal illness of their little one, but also, due to long-lasting unemployment and an inability to navigate “the system.” During one visit, Spunky had a question for me her Dad said. She nestled next to me on the couch, looked me square in the eye and asked, “Why did God allow me to have this disease?” How could I possibly answer this question? I reflected the question to her, “That’s a big question, what do you think?” Her answer flowed in childlike simplicity, “Oh, that’s an easy question … It’s to show God’s love.” My response? Let’s put it this way … I was glad my next visit took me 45 minutes to get to. I needed that time to process what she said and the way she said it. There are many more pediatric stories from my experience, but they all pretty much inform my chaplaincy in that focused listening, heart and soul, gentleness of manner and wisdom beyond my abilities are required of me… and then some. Feelings of inadequacy, even failure, were frequent. Those were my issues to resolve through debriefing with a trusted friend. Pediatric hospice chaplaincy tested my mettle. If you have pediatric hospice stories, our group would be blessed to hear them. Feel free to share them.

Wednesday, August 6, 2014

Chaplain, take care ... of yourself!

The dreaded topic of self-care will take some time and space for reading and reflection. In CPE we heard: ‘Love yourself as much as those you spend your time and energy and health on. All things in moderation or you will pay the price.’ Self-care is a matter that is taken seriously in the APC Pastoral Competencies for Board Certification. This competency reads as follows: ‘Attend to one’s own physical, emotional and spiritual well-being.’ If you have high blood pressure, what are you doing about it? If you have Type II Diabetes, how are you managing it? Are you eating a healthy diet? exercising? If not, why not? You are a key person. Emotionally/spiritually... is there resentment, unforgiveness, anger, passive-aggressive behaviors? All of these are huge barriers to patient and family spiritual care. To put it as clearly as I can, your family needs you and your career needs you, not perfect, but healthy. It was a good read when I came across the story/testimonial of Chaplain Rev. R. Michael Stuart, HR, M.Div., M.A., BCC, Spiritual Care Manager of Home Care and Hospice of Western New York, Inc. I found his journey compelling. You might, as well. A few months ago a lawyer friend of mine posed the question, “What’s the difference between self care and self abuse? He likes to play the devil’s advocate and tease but as I thought about it, he asked a very good question. I say that because I have personally experienced both in my attempts to take care of myself in my work as a chaplain. I believe there is a fine line between self care and self abuse. For example, in my own case I have used alcohol, tobacco, and comfort foods in excess. I have worked too much in unhealthy stressful environments and didn’t pay enough attention to achieving a healthy balance. I didn’t stop to listen to myself and spend time in prayer and meditation. My psychiatrist at the VA says that I have always been busy doing. A few years ago I began to address self abuse and work towards healthy self care. I began to explore my leaning towards a commitment to the contemplative life and contemplative prayer which works for me. It took a painful second flare up of pancreatitis and a diagnosis of Type II Diabetes to help me move towards a healthy self care. When chaplains contemplate self care it needs to be defined. In the competencies of the Association of Professional Chaplains; Section II: Identity and Conduct, it states, “Attend to one’s physical, emotional, and spiritual wellbeing.” In the critical juncture for candidates being considered for board certification, a Certification Committee makes the decision if the candidate is ready. One of the questions which the candidate must answer to the satisfaction of the committee is this one addressing self care. Now it is one thing to be able to articulate how one will take care of oneself in professional chaplaincy but another to actually practice a healthy self care. Stated succinctly in Chaplaincy Today, “Self care is about health and wholeness, being well spiritually, emotionally, physically, and mentally—for the purpose of renewal and personal and professional growth.” I will use myself as an example of a professional chaplain who has practiced both self abuse and self care in my ministry. When I was asked to be your speaker on the subject of self care, I accepted knowing that maybe I could be helpful to some of you who are still early in your chaplaincy work. The first thing I did was to e-mail a good friend, mentor, and former chaplain colleague I worked with at St. Charles Medical Center. He is the senior chaplain with over 25 years of experience. He is a year younger than myself and board certified through National Association of Catholic Chaplains. I asked him to reflect on how we struggled to stay healthy in a very stressful work environment. Since my departure, I asked if our department had developed any policies or practices regarding self care of chaplains. He said no which is not unusual for spiritual care departments. But that doesn’t mean that self care shouldn’t be intentionally encouraged by institutions employing chaplains. What he did write came out of his CPE experience. He responded to my question saying, “Sounds like an enneagram 2! Timing for this talk should be good for you though with the tending to self your docs have demanded. CPE gave us ‘Love yourself as much as those you spend your time and energy and health on. All things in moderation or you will pay the price. The five rules of homework for chaplains are: (1) Don’t drink more than you should; (2)Don’t eat more (or types of food) than you should, (3) Keep your prayer life up; (4)Make sure you get all the sleep you need; (5) Always have someone you can really talk to. Someone who will let you yell, cuss, and/or cry and forget all about it.’ He was that person for me. He concluded, ‘As we have experienced – fall short in any one of those categories and you pay the price.” Of course, I know these rules and so does he. But I have broken them and paid the price; loss of health, inability to focus on those who I am called to serve; inability to continue my ministry, and to inability to maintain healthy relationships. I appreciate his transparency. It renews my resolve to live healthy physically, emotionally, and spiritually. My battle with weight still wages, but I am winning at this point. My challenge to stay balanced emotionally with all of the pulls and tugs on my time and energy is something I am aware of. Going to the gym four or five times a week helps me rid myself of excess adrenalin and gives new strength for my work. Keep myself centered spiritually through my spiritual disciplines gives me focus. I have crashed and burned more than once in each of these key areas. That is why I highlight for all hospice Chaplains the need to be self-aware and resolve to take care of your body, soul, and mind. Your comments and testimonials are welcome.

Monday, August 4, 2014


My son recently wrote a letter to a number of his colleagues encouraging them to press on in their work at the hospital he worked at. He has since taken a new position in Atlanta (he is a highly skilled paramedic who served out troops in Afghanistan). I was intrigued by the following event in John Maxwell’s life. As you read, think of how this kernel of truth informs your life and work as a Chaplain or other hospice professional. It was a beautiful day in San Diego, and my friend Paul wanted to take me for a ride in his airplane. Being new to Southern California, I decided to see our home territory from a different perspective. We sat in the cockpit as Paul completed his instrument checks. Everything was A–Okay, so Paul revved the engines and we headed down the runway. As the plane lifted off, I noticed the nose was higher than the rest of the airplane. I also noticed that while the countryside was truly magnificent, Paul continually watched the instrument panel. “All those gadgets,” I began, “what do they tell you? I notice you keep looking at that one instrument more than the others. What is it?” “That’s the attitude indicator,” he replied. “How can a plane have an attitude?” I asked. “In flying, the attitude of the airplane is what we call the position of the aircraft in relation to the horizon.” By now my curiosity had been aroused, so I asked him to explain more. “When the airplane is climbing,” he said, “it has a nose–high or positive attitude because the nose of the airplane is pointed above the horizon.” “So,” I jumped in, “when the aircraft is diving, you would call that a nose–down or a negative attitude.” “That’s right,” my instructor continued. “Pilots are concerned about attitude of the airplane because that indicates its performance.” Paul, sensing I was an eager student, continued, “Since the performance of the airplane depends on its attitude, it is necessary to change the attitude in order to change the performance.” That conversation triggered my thinking concerning people’s attitudes. Doesn’t an individual’s attitude dictate his performance? Does he have an “attitude indicator” that continually evaluates his perspective and achievements in life? What happens when the attitude is dictating undesirable results? How can the attitude be changed? And, if the attitude changes, what are the ramifications to other people around him? - John Maxwell

Friday, August 1, 2014

SPECIAL Clinical Post: Pain and Decline

Chaplains and Their Clinical “Observations” Chaplains are not licensed to assess; therefore, they observe and document using the term “observed”. There are two critical areas that a Chaplain must excel in when it comes to making these clinical observations: Pain and Decline. It has been stated by various leaders in hospice that a Chaplain’s documentation has saved that particular hospice money when charts were reviewed by Palmetto or other Medicare intermediary. The latest requirement of Chaplains is to state which pain scale they used: VAS scale, FLACC scale, or PainAD. Pain Scales The VAS or Visual Analogue Scale is a simple 0-10 scale highlighted by ‘smiley faces’ and ‘sad faces’ for the adult patient. The FLACC or Face, Leg, Activity, Cry, Consolability Scale is a broad-based scale used to observe pain levels in infants and children up to 7 years of age and for adults that are non-communicative (but not dementia patients). It bases its scoring upon 5 areas of observation as posited in its title. Based on the scoring, a Chaplain can document a pain level. The PainAD or Pain Assessment in Advanced Dementia is used to observe and document pain levels in dementia patients. The Chaplain must document using the verbiage similar to this: “Patient states her pain is 3/10 on the VAS Scale.” Observations of Decline The Clinical Chaplain observes indications of decline and documents these observations so that the patient’s chart will reveal a history of decline. The means that I instruct our Chaplains to use is called The Big MAC. The title is easy to remember and easy to teach as most Westerners remember the McDonald’s commercial about The Big Mac. With so much information to be included in the Chaplain documentation, it helps for a Chaplain to have a simple reminder that decline must be documented. The Big MAC includes the following: M—Mobility: How does the patient ambulate? Wheelchair, walker, cane, holding onto the wall, needs assistance? When documenting your observations of decline, note any difference in the manner the patient ambulates from your prior visit. A—Activities of Daily Living: The patient and/or family member(s) may assist you with this observation. Areas of ADL’s to observe or gain information regarding include: eating, sleeping, bathing, incontinence, transferring, toileting. Helpful questions include: How much is patient eating? What amount compared to last visit? Has food been pureed? How is appetite? How is patient sleeping? All night? Partial night? Napping for long stretches during the day? Up at night, sleeping during the day? How many hours of sleep, day or night? Is patient bathing him/herself? Assistance needed? If so, contact Nurse to meet this need. C—Communication: Is there any difference in the manner in which the patient speaks? Is the patient short of breath compared to your last visit? Is the patient struggling to remember words, gets mixed up, repeats the same phrase, has troubled making sense? (all compared to your last visit with patient) Since both of these matters of documentation are proprietary to Cornerstone Hospice and Palliative Care, Inc. I request that my colleagues in leadership positions in spiritual care in other hospices please seek permission before adopting these in your hospice. Please contact me through this blog site and we will assist you. Thank you.