Monday, September 29, 2014
Whenever I teach a session on Outcome Oriented Chaplaincy, there are the incredulous who think that this takes the ‘heart’ out of hospice care. Nothing could be farther from the truth. What’s at the heart of Outcome Oriented Chaplaincy is spiritual care that is both insightful and high quality. The following are three great benefits of Outcome Oriented Chaplaincy: 1. OOC provides a Spiritual Plan of Care that identifies the spiritual concern(s) of the patient AND family/caregiver. At Cornerstone Hospice, a very progressive and highly successful organization, the Spiritual Plan of Care is OOC. The Chaplains identify the spiritual concern, and then discuss the outcome or resolution that the patient is seeking. The Chaplain uses his/her professional experience to select the proper interventions to use that will assist the patient to meet resolve the spiritual concern as much as possible. Likewise with the family/caregiver. Cornerstone is the only hospice I am aware of that has this dual focus on providing a Spiritual Plan of Care for patient and family/caregiver. The electronic record has the Chaplain complete the Care Plan for the patient in one section and the family/caregiver in a completely separate section of the Assessment. 2. OOC wins the approval of the IDT. In any IDT or in some cases, the IDG, is composed of highly trained participants: a physician (some certified in hospice and palliative care); a social worker (some are licensed, some are also counselors); volunteer specialists, bereavement counselors (some with a Master’s degree, others with a PhD); nurses (some with advanced degrees and now all must be certified in hospice and palliative care); and, CNA’s. The Chaplains at Cornerstone Hospice are required to have a Master’s degree in an appropriate field of theology and 3 units of Clinical Pastoral Education. As I understand the trending of requirements, at some point hospice chaplains will need to become Board Certified like our hospital counterparts. I say all of this to indicate that OOC promotes highly educated and skilled spiritual clinicians. Further, a hospice committed to OOC will have didactics to re-enforce the concepts that make OOC such an effective philosophy of care. 3. OOC develops skilled clinicians. Long gone are the days when a pastor would volunteer his/her time visiting the sick of a hospice. Hospice Chaplaincy is a recognized field of spiritual care by a number of cognate groups that have a specialty certification in Hospice and Palliative Care. If the goal is to assist patients to have a ‘good’ death, then it is fundamental to consider that the Chaplain must have the skills to identify and resolve spiritual/existential issues as much as possible prior to the patient’s death. The same applies to resolving the family/caregiver’s spiritual concerns. You can find more information about OOC in “Professional Spiritual & Pastoral Care” edited by Rabbi Stephen B. Roberts. This book is a classic for chaplaincy and is a collection of outstanding contributions by recognized leaders in chaplaincy service. Bless you, Chaplain Friends, as you make full proof of your ministry.
Wednesday, September 24, 2014
Recently I taught as class for Spiritual Care Volunteers. As sessions normally proceed questions arise about the hospice Chaplain. One question was: “What is the difference between a parish pastor and hospice Chaplain?” Without taking much time from the main presentation I replied, “A hospice Chaplain is much like a medical specialist. Chaplains are specially trained in end-of-life spiritual care. The parish pastor is a generalist who knows a lot about many issues, but will refer to specialists who are more able to counsel people in marriage crisis, or financial crisis or in end-of-life crisis. When I had knee surgery I went to a specialist, an orthopedist, who knew what the problem was and how to fix it.” My plan for this article is list 8 essential skills a hospice Chaplain excels in to provide effective spiritual care. The list is not in order of priority. Skill One: Empathetic Presence. We looked at the topic of empathetic listening in the August 12, 2014, post. Endlink Resource for End of Life Care Education suggests that empathetic presence involves the following: “Active listening; 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; Empathetic presence may also involve a metaphorical “holding someone’s pain” as you are open-hearted but do not become overwhelmed emotionally; It may also ask you to laugh, be joyous, and not focus on illness, pain, or dying; In the face of comments such as “why is God making me suffer so?” or “I just wish this were over, I can’t stand it anymore” empathetic presence might include: Acknowledging their suffering; Saying you are sorry you don’t have the answer or solution; Providing reassurance of your (or the team’s) ongoing care.” Skill Two: Assist patients and families to adjust to their “new normal”. Regardless of the disease process, at end-of-life patients and families experience internal chaos of confused emotions, anticipatory grief, and spiritual pain. The hospice Chaplain can greatly assist through affirming that their experience is normal and expected. Further, the Chaplain can offer reassurance that the entire hospice care team will be there for them. Their “new normal” is a familiar experience to the care team and all that can be done to be supportive will be done. Skill Three: Dignity therapy. Max Chochinov developed this approach to providing a life review for patients. The We Honor Veterans program has a similar life review called the Veteran’s History Project. Both of these formal venues can place in the hands of the family and caregivers a powerful life review of their loved one. A life review can also be done in a more informal manner through a pastoral encounter. Whatever method the Chaplain uses to guide the patient through the life review the key is that the patient can express the highs and lows of life and any expression of regret or satisfaction with life. Skill Three: Meaning making. One of the vital issues patients at end-of-life work through is meaning making. What gave my life meaning when I was healthy? What gives my life meaning, now? These are powerful questions the scream for answers. You will be amazed at what a patient will say to these questions. Some answers will bring the Chaplain to tears. Skill Four: Hope/strength/comfort. These three values I placed together because they play off of one another. When a patient thinks through what gives hopes to their lives, they often receive new strength for their suffering and thus, comfort. There may be others who have entered their lives at some point in the past who made such a profound impact on them that a call, an email, or a letter will provide great strength and comfort. As a Chaplain, I looked for ways I could bolster hope in the lives of those I served. By contacting a university’s sports program, I was able to assist a patient who held the sport’s team and coach in high regard. In another case, a patient received a fishing trip which he talked about during the weeks preceding his death. We must have hope to live when healthy. We need hope to live when we are facing death. Skill Five: Helping the patient see things in a new light. This is a brief definition of reframing. Suffering brings about its own emotional trauma. The skilled hospice Chaplain can greatly benefit the patient by reframing the circumstances. For instance, a patient in an initial visit may be very shocked that his physician has told him that there is nothing else that can be done and hospice is the only option left. A sensitive Chaplain may reply to this by saying, “Your doctor may have told you there is nothing left to do for your illness, but we will do everything we can to bring meaning and hope to your life.” Compassion and common sense are keys to reframing. I read a passage in Mark Twain’s, Tom Sawyer, which makes me both smile and laugh at Tom’s brilliance at reframing a punishment he had rightly earned. He was given the task to whitewash 30 yards of fence on a Saturday while his friends all went to the local swimming hole. Tom’s friend, Ben, began to taunt him with his having to work. Tom’s reply is classic reframing. “What do you call work?” “Why, ain’t that work?” Tom resumed his whitewashing and answered carelessly: “Well, maybe it is, and maybe it ain’t. All I know is, it suits Tom Sawyer.” “Oh come, now, you don’t mean to let on that you like it?” “Like it? Well, I don’t see why I oughtn’t to like it. Does a boy get a chance to whitewash a fence every day? That put the things in a new light…” (Twain, 1970, , p. 18) Skill Six: Perpetuating religious rituals. Most hospice patients have been out of their churches, synagogues, temples, or other place of worship for quite some time. Their souls long for ritual. The hospice Chaplain recognizes that and makes provision to either meet the ritual needs herself or will call upon a local Pastor, Rabbi, Priest, Monk, Imam, or other spiritual leader to assist. Skill Seven: Communicating with patients with a dementia. This is a topic dear to my heart as I have developed a means to do just that. John Zeisel wrote, “I’m Still Here: A New Philosophy of Alzheimer’s Care”. Having done my research and application of theory, I can attest that the patient’s being is still there. My perspective is simple, if the patient is still there, it’s our moral duty to go and find them by learning techniques to reach them. Each of the above skills has to be sharpened and practiced. These skills do set the hospice Chaplain apart from the parish pastor or even other types of Chaplains. These skills characterize the work of the hospice Chaplain affirming the unique contributions they make to healthcare. Bless you, Chaplains, as you provide comfort and care to those you serve.
Monday, September 22, 2014
When theology meets suffering … The late Yandall Woodfin, Emeritus Professor at Southwestern Baptist Theological Seminary, stated: “You have not done Christian Theology until you have dealt with suffering and death.” As I understand his statement, the application can be taken at least in a two-fold manner… personally and professionally. Personally, I get the idea the idea of how my faith and belief system, my theology, if you will grows in a formative manner through suffering and death. When I was 10 years old, my father died. That was hard for a 10 year old whose surviving family members were two sisters and a Mom. There was suffering involved with the process of life after his death. We were plunged into immediate poverty. My Mother had to find a job and in that day and time, the Beaver Cleaver days when Dad worked and Mom raised the kids, jobs for women were scarce. As it turned out, I lost my Dad to death, and my Mom to the work world. I went from the ready-made breakfasts and lunches, to a get-it-yourself way of living. We did without a lot in those days. Suffering wasn’t limited to my childhood years; it seemed to follow into adulthood. The seminary lifestyle was harsh and hard. I worked two jobs, my wife worked one. It still only hardly made ends meet. The parish pastorate had its good and bad. The good was really good and the bad were really bad. In my 25 years of the parish pastorate I met some of the most godly, God-fearing, God-serving, God-loving people. I also met some of the most horrid people who ever walked on the earth. The latter defined suffering and often were agents of suffering. When I entered into hospice chaplaincy, I discovered a new facet of suffering. Every day I went to work, I discovered suffering from new perspective. Men suffered, women suffered, children suffered … the pangs of life-limiting illness, the sense of loss of nearly everything they worked for or lived for, the reality that their lives would be cut short. With this suffering, there was the suffering of the families and caregivers… the suffering of loss. The suffering of children stricken with diseases that have such monikers as Hurler’s Disease and Epidermolysis bullosa can take the wind out of the Chaplain’s theological sails. How does a Chaplain make it work theologically? So as to not lecture those with strong theological education and come across offensive and arrogant, I will simply offer my own understanding of how I process suffering from my theological formation (which is unapologetically Christian): 1. I look at the beginning of suffering from Genesis. 2. I look at the resolution of suffering from Revelation. 3. I seek understanding of God’s view of justice. 4. I attempt to understand God’s providence. 5. I look to the Cross. If this provides you with an addition framework for your theology of suffering, then this post will have been successful. Dig deep in your soul as your process suffering and theology. Bless you, Chaplains, as you work with Common Man who suffers.
7 Winsome Personality Traits of Hospice Chaplains I read in the Positive Attitude Café blog this tremendous description of a winsome personality: “Winsome personalities are the ones that definitely ‘win’ more. Unfortunately, we don’t hear this trait mention very often anymore. Yet, it is a refreshing word description of someone whose life exhibits tangible positive and energetic qualities. People want to be around these individuals. Don’t you? Absolutely!” The hospice Chaplain relies upon his/her personality to begin a healthy, pastoral relationship with both patients and their families/caregivers. There is nothing that takes the edge off of a new relationship than a smile, a kind work, something encouraging, perhaps a bit of appropriate humor, and the attitude of “I like being here with you.” To get you thinking about winsome personality traits, I will list them and provide a brief comment about each. 1. Integrity—Integrity frees up the Chaplain to have all of his mental/emotional faculties about her/him. No energy is drained trying to cover anything up like cheating on a mileage report or length of visit time or writing Clinical Notes for patients not seen. Integrity goes a long way to define the Chaplain. In a pastoral care relationship trust is THE key component. Everything else is built upon trust. 2. Responsibility—Pastors, be they parish pastors or hospice pastors, have a flock that needs care. The hospice Chaplain is responsible for providing that care. When I first started with hospice my assignment was a facility of all dementia patients. I was lost in attempting to provide care. I was in need of instruction. Responsibility lead me to discover new and successful ways to provide spiritual support. It is our responsibility to discover how to provide care for our patients. 3. Flexibility and adaptability are fundamental. One thing I have learned in hospice work is everything is set in jello. Change, as the wind upon the wave in the middle of a hurricane, is the norm in hospice care. The Chaplain has to be flexible and adaptable. This has everything to do with attitude. When it comes to change some bristle and complain. The winsome Chaplain accepts change as the norm and keeps her/his spirit sweet. 4. Compassion—Need this trait have any comment? 5. Courage—Advocating for a patient in an unfamiliar setting is a challenge that requires courage. For instance, I was visiting a patient in a hospital and noticed he was in pain. He had already spoken to the nurse stating he was in pain and was told his next dose of pain medicine was not until 2 hours. I excused myself from his room and spoke to his nurse to request that she look at his chart to see is he had a PRN medication for such a time as this. The orders were clearly written that he did have a PRN medication listed. She then got him the medication and thankfully his pain began to subside. Another example of the necessity of courage has to do with the Chaplain providing an ethical statement in an IDT meeting. I have done this on several occasions. While the hierarchy within the IDT is theoretically flat, there still is a pecking order of sorts. It takes courage for a Chaplain to give an ethical voice to a patient need. 6. Patience—The hospice Chaplain must exhibit patience. In any organization, there will be glitches in technology, problems of various sorts, and issues that defy quick resolution. In providing pastoral care, there will be those who question the use of medication, question what a Chaplain does, and question the benefit of Chaplains. In the world of ministry, there will be parish pastors who think the hospice Chaplain is less than in the value of ministry. This requires great patience. Patience keeps the circumstances calm. Patience keeps the spirit kind and sweet. 7. Conscientious—The hospice Chaplain exhibits a conscientious demeanor whenever a pastoral care visit takes place. The Chaplain exudes this through attentive and interactive listening, through body language, through gentle and insightful dialogue, to name but a few. The Chaplain exhibits conscientiousness by keeping all patient visits in compliance and by providing excellent documentation. The Chaplain recognizes that he/she is part of a Team effort and embraces the IDT with a sense of loyalty to all and to the mission of hospice. Those are 7 I believe are on the top of the list for a Chaplain to have as part of his/her life. Time and space prevents me from discussing these additional winsome traits: Dependable, Discreet, Fair, Observant, Optimistic, Intelligent, Persistent, Capable, Charming, Confident, Encouraging, Reliable, Helpful, Humble, and Imaginative. I will leave that up to you to think on those traits. They are equally important. Bless you, Chaplains, for your great work.
Wednesday, September 17, 2014
3 Major Warning Signs of Pastoral Caregiver Fatigue You wake up one morning and you don’t feel like going to work as a hospice chaplain. You’re tired, feel overwhelmed, and feel you can’t make it another day. What is the problem? You might wonder if you’re coming down with the flu, wonder if you’re depressed, but conclude you’re just emotionally fatigued. In this post, I want to suggest that there is an early warning system built in to our emotions. However, ministers are the worst at listening to that early warning system. We are so overly committed to our work that we fail to listen to one doing the work … ourselves! Early Warning System Alert #1: Forgetfulness—Forgetting the car keys or a pen or something minor happens from time to time. Forgetting a patient visit and then another is something in a different category. Have you done this lately? The reality is you have your visits on your Scheduler and still miss them. Heed Alert #1. Early Warning System Alert #2: Irritability—Ok, so you got up in a bad mood. We all to that sometimes don’t we? We work out of it by mid-morning and enjoy the rest of our day. After all, we can’t act irritable toward our colleagues, right? Well, Alert #2 suggests that we are irritable toward those colleagues and our family. Nothing satisfies us. We’re in what seems like a permanent bad mood. It seems we’re mad at the world. Heed Alert #2. Early Warning System Alert #3: Decline in productivity—Your caseload has grown and you’re having trouble managing it. You just dread making phone calls anymore. You’re good at it, but not now! You’ve gotten lost in the caseload. Your productivity has declined markedly. Heed Alert #3. If you heed the Alerts mentioned above, then here are the steps you need to take: 1. Speak with your Spiritual Care Manager. Do not wait until you are so far out of compliance that it will take weeks to catch up. That is endangering the company and your position. Nip it in the bud. Keep in mind that self-awareness was a fundamental of CPE. Your SCM will understand and assign a PRN Chaplain to assist. 2. By all means, take some PTO. When you experience this type of fatigue, your body, mind, and soul is crying out for rest. 3. Review recent events in your life. For how long a period of time has this been building? Are you burning the candle at both ends? Are you trying to do too much with your time? Some Chaplains are also bi-vocational pastors. The sheer magnitude of psychic energy expended in both positions can be very draining. Even Elijah needed to rest and eat good food. 4. What are you doing for self-care? Are you getting enough sleep? What about your diet? Are you eating a healthy diet or are you eating on the run and high carb lunches at that? What about exercise? What are you doing to work your body into some short of healthy condition? When was your last physical? 5. If life has you weighed down and you sense you are depressed, get the EAP number from your office. Contact the EAP people, set the appointment, and go. There is no shame in this. We all need help from time to time. 6. Keep your manager informed. Communication is vital at this stage. Spiritual caregiving is not a walk in the park. That you are fatigued confirms this. Get rest, get well, stimulate your spiritual disciplines, do what you need to do for you. Bless you, Chaplains, for who you are and what you do.
Tuesday, September 16, 2014
What type of Pastor were you before you came into hospice? That is a stunning question. It is a question that forces a sense of self-awareness. There are 4 key questions that will help you as you explore the answer. Looking back over a ministry career in the parish pastorate can bring about feelings of nostalgia. Nostalgia has a way of fogging one’s memory, it must be warned. So let’s take a walk back over your parish ministry career and do some kicking around. 1. Key Question #1: Do you have any unfinished business? We hospice Chaplains are fairly well known for exploring with our patients any of their unfinished business. Do we have any? Unfinished business drains the soul of energy, creativity, and inner peace. Is there someone you have yet to forgive? Beware the quick and thoughtless, “Oh, I forgave him long ago.” Did you really or is it easier just to say that instead of acknowledging your pain and getting before God in prayer for healing that you may, indeed, forgive? Spiritual pain in ministry is real and lasting. Perhaps a church member wounded one of your children. How are you coping with that, particularly if the damage was so bad that that child (now an adult) will have nothing to do with church? What about your spouse? Thom Rainer, President and CEO of Lifeway Christian Resources, has a powerful blog site (http://thomrainer.com/blog/). He posted a few articles about the pastor’s wife (I apologize to those Chaplains who are female. Perhaps you can add to this discussion through the Comments section to share your perspective). Did she find any of these to be true when it came to her relationship with the church? In the January 2014 edition of the blog, Rainer suggests “11 Things I Learned from Pastors’ Wives”: 1.The number one challenge for pastors’ wives is loneliness. 2. These ladies need to know they have the love and support of their husbands. 3. A pastor’s wife does not want a church member to tell her what her “job” at the church is. 4. She would like church members to understand that neither she nor her family is perfect. 5. The pastor’s wife does not want to field complaints from church members about her husband. 6. The pastors’ wives who entered ministry with no forewarning about the issues they would face were the ones who stressed the most. 7. She does not want to be told she needs to work to support her husband and family. 8. While most pastors’ wives affirm their identity as a wife in ministry, they do not want that to be their only identity. 9. Many pastors’ wives believe they need training for their roles. 10. These ladies want to be reminded again and again to keep their focus on Christ. 11. Many pastors’ wives want a means where they can support one another. Unfinished business does involve emotional responses to what happened in our past. For most pastors it has to do with being lied to or lied about; mean and nasty words spoken to or about; a forced termination with the accompanying blood bath business meeting; unending stress; imposed and accepted false guilt about taking a day off, going away for a weekend, buying a nice car or nice clothes or nice anything, being openly criticized at a business meeting, being harassed by the church critic, never feeling accepted into the fellowship, being gossiped about in the community, and the list can go on. Is there any unfinished business? Believe it or not, the emotional drain will follow you into hospice ministry. Changing vocational ministry settings will not erase all of that pain. Hospice service will give you a wonderful change of pace, affirmation, acceptance, a place at the table, respect, encouragement, and many more great emotional strokes. But, if you are carrying a refrigerator filled with rotting emotions, you won’t be able to enjoy the positive aspects of the work. 2. Key Question #2: How did you manage your time? In the parish pastorate you are master of your own time. What was your schedule? Did you have set office hours? Did you have a starting time and a quitting time or was your day open-ended? Since you were on-call 24/7, what did you do for self-care? Have you noticed that there are many out-of-shape Pastors? When you went to a convention or conference, did you notice how many pastors were obese, on all sorts of medication, nervous, anxious, and unable to focus for more than a few minutes? I observe these kinds of things with a profound sense of sorrow. What has church ministry done to these men, many of whom are friends of mine? I spent twenty five years in the local parish pastorate. I get it. I know what it is like to work and work hard to get the resistant to come to church, to give to the church, to reach the lost (SBC language for those who need God’s salvation through Christ), to baptize more this year than the previous year, to increase missions giving, to build bigger budgets, to build bigger buildings, to have more and exciting programs to draw children, teenager, young adults, middle aged adult and senior adults, to hire new staff, to have a day care center, to manage the program efficiently, and on and on it goes. It’s a pressure cooker. Does a pastor need time for himself or herself? You better believe it. Someone used a play on words when commenting on the manner of Jesus… “He came apart from his disciples to pray”… The play on words is this: either we come apart to pray or we come apart. How true is that? What was your pattern for prayer and getting centered spiritually when you were in the parish pastorate? What is it now? In the hospice chaplaincy, you have to build a schedule. In fact, at Cornerstone Hospice you are required to have your schedule posted for the next 2 weeks. You have to visit your patients every 30 days. That is a Medicare requirement. You have meetings to attend. The bottom line is this; you have to manage your time efficiently. You have a starting time, 8 AM. You have an ending time, 4:30 PM. 3. Key Question #3: What was your reputation as a parish pastor? What strengths did your congregation recognize in you? Were you seen as a man of God with a pastor’s heart? A great administrator? A leader? A successful communicator? A good listener? All of these will hold you in good stead as a hospice chaplain. Wouldn’t it be nice if were in our success zone all of the time? Since we’re human, that means we make mistakes and earn the “stink eye” from time to time. Here are some qualities that a hospice chaplain definitely does not want to be known for: being a KIA (know it all); sanctimonious; stingy; critical; careless with language; careless with jokes (dealing with race, women, morality, to name a few); argumentative; given to moodiness. Steve Maraboli in his book "Unapologetically You: Reflections on Life and the Human Experience" reminds us, “When you're too religious, you tend to point your finger to judge instead of extending your hand to help.” These qualities, both positive and negative, are not exhaustive in number and description. Perhaps you have more. Our readers would profit from your observations. 4. Key Question #4: What preparation have you made for hospice chaplaincy? Each hospice organization has different requirements for hiring chaplains. My observation has been that if the requirements are minimal, so is everything else about that organization. Stay away from that. The higher the qualifications, then the higher the standards of the agency. It could also follow that the pay and benefits are higher as well. When I speak of preparation, my own opinions leak out like a fire hose! When I was younger and impressionable, I was told in reference to the pastorate to prepare fully for the task. My response to that was to earn a BA, an MDiv. and a DMin. I’m not sure all that benefited me financially, but it enable me to function in the pastorate in a prepared manner. When I transitioned to the hospice environment, I was blessed by two hospice agencies which encouraged and permitted me to take 4 units of Clinical Pastoral Education. Did they pay for my Units? No, but in a sense they did as they allowed me to take work time for my studies. While it was not required, I earned Board Certification as a Chaplain and then certification as a Clinical Fellow in Hospice and Palliative Care. Did any of this earn me a huge raise in salary? No, not a bit. But, it gave me inner knowledge that I prepared as best as I could for the task I am charged with. In the coming days, it is my opinion that in the new healthcare climate, Chaplains in the healthcare field will all have to be board certified. I believe that will be a Medicare requirement. For the longest time, hospice chaplains were parish pastors who were good people who cared deeply for the sick and dying. It’s a different day in 2014 than in 1984 when hospice started. We have gone from a ‘movement’ to an ‘industry’. That carries with it a different set of requirements. Hospice Chaplains, be aware of this and do your best to move forward toward board certification. If you have questions about how to achieve this, please ask. I’ll provide you with information. Bless you, Chaplains, in your work.
Monday, September 15, 2014
If you are new to hospice chaplaincy, welcome aboard! Getting a firm footing is essential to your long-term success. You will find it a wonderful career. There is never a dull moment as you will soon discover. Having mentored CPE students and Chaplains who came to hospice from the pastorate and other chaplaincy venues, I have distilled to 5 the rules of thumb that will hold you in good stead as you gain your experience. 1. Major on relationships. You will be in many meetings with your IDT. Get to know each by name and develop enduring relationships with them. You will be visiting the same patients and may need to negotiate times and days when you will be visiting so you don’t bump into one another on the same day and time. One responsibility you have is to provide spiritual and emotional support to your team. You may be asked to officiate at the funeral of an IDT member’s loved one or officiate at an IDT member’s wedding or provide brief pastoral counseling sessions. The relationships you build can last for the entirety of your hospice career. Embrace your team and allow the relationships to build along a natural path. 2. Win over your Team Manager and your nurses. I am talking about skill in this rule of thumb. Your Team Manager and nurses need to know that you are informed and skilled at what you do. They do not expect you to know everything about medical jargon and disease processes, but it helps if you have a basic understanding of the process of dying. Keep your nurses informed if you notice severe and quick decline in your patients. They appreciate your phone call. Be supportive of your nurses. Complement them. Encourage them. One day you might happen upon them cleaning up a bloody death scene when the patient’s aneurism burst and claimed that person’s life while you are bringing comfort to the family. You might happen upon a nurse whose visit took extra-long as they were cleaning the patient whose bowels let loose or the patient was in need of care after vomiting. Their work is hard. They need to know the Chaplain notices and extends appreciation their way. All that you do in a positive manner finds its way back to the Team Manager. When you speak in an IDT meeting, be brief, be detailed, be informed in your comments. 3. Participate in the IDT meeting. The IDT meeting is not a time when you catch up on your computer work. It is a time for focus and contribution. You will be called upon to give a short spiritual care synopsis. Make it count. Remember, in every meeting you are building credibility. Be prepared to explain how your actions are achieving the Goals/Expected Outcomes of your Spiritual Plan of Care. 4. Excel with your patients and families. I won’t be naïve to think that every patient and family caregiver will get along perfectly with you. There will be those challenging patient and/or family caregivers that will give you heartburn. Just keep in mind that these people are at the end-of-life, they have lost control over just about everything, and they are just trying to live another day. With that said, excel in your spiritual care giving. Always remember, we do not bring an agenda with us. The patient sets the agenda. We are there to serve. 5. Complete your computer work. A Chaplain in the healthcare environment is going to do computer work of some kind. The documentation at Cornerstone Hospice (my hospice) uses Allscripts. Among all the matters that need to be addressed, the Clinical Note, pain score, decline observation are among the top matters that need to be addressed with clarity and excellence. Serving as a hospice Chaplain is a great calling. Getting off to a good start will make your work extremely enjoyable. Blessings upon you, new hospice Chaplain!
Thursday, September 11, 2014
5 Traits of Effective Hospice Chaplains I have observed what I believe to be successful hospice Chaplains. Here is what made them tick. Each of these has been practiced on a consistent, day to day manner. 1. They are spiritually focused. Most hospice chaplains come from the pastorate. The habits and spiritual practices normally follow the minister into chaplaincy. The effective chaplain practices his or her spiritual disciplines consistently. They keep the lines of communication open between themselves and God. They pray, read Sacred Texts, even sing! They forgive, don’t stay bitter, and don’t carry grudges as these are clogs in the spiritual pipeline much like the gunk that stops up drains in our plumbing. 2. They maintain a sense of humor. Dealing with spiritual challenges in the lives of patients and families day after day can drain the best of us. The effective chaplain maintains a sense of humor. He or she never uses humor at the expense of patients or family caregivers, but the chaplain knows how to laugh and enjoy a good time. 3. They are intentional students of chaplaincy. They recognize there is not just one way to provide spiritual care. They read chaplaincy journals. They learn the medical jargon and actually use it in IDT meetings. They study new techniques to provide spiritual care to patients by disease process (i.e. they discover ways to connect with dementia patients, they provide anxiety reducing interventions with COPD patients, they learn how to provide supportive presence with cancer patients, just to name a few). 4. They erect proper boundaries and maintain them. When they are working, they work with a great work ethic. But, when it is time for the shift to end, it ends. They protect their weekends. They have learned how to say, “No.” 5. They make marriage or close relationships a priority. More than likely the parish pastor who transitioned to hospice chaplaincy has forced his marriage and family to sacrifice time so that the parish ministry could consume most all family and relational time. Hospice chaplaincy does not require that and, in fact, urges the chaplain to invest in family time. The ministry is demanding. Hospice chaplaincy is demanding. There are days when the soul is spent. The beauty of hospice chaplaincy is found in the fact that the chaplain is a respected member of the IDT and is encouraged to find rest through recreation, family, and other personal enjoyments. There is no slavish board demanding a pint of blood from the pastor and each family member. A supportive team, Team Leader, manager, and other staff are all characteristic of the hospice experience. I will revisit this topic or a twist on the topic, but it needs to be stated that hospice chaplains no longer live in a glass house and can enjoy the benefits of being a normal person. Bless you, Chaplains, for who you are and what you do.
“An Affirmation of Hospice Caregivers”, by James E. Miller I believe in hospice caregivers. I believe that you do an amazing work. For you reach to people whose needs are great, people whose conditions can be difficult to witness and to attend, people whose lives are unfolding in ways they never imagined and never wanted. You- all of you- help fill a void in our society, for we as a culture do not deal well with dying and with death, and you lead the way in showing us how this can be done in healthy, loving ways. By acting as agents of change among us, you teach as well as serve, you envision as well as envelope, you encourage as well as entrust. Without question, much is asked of you. You are asked to be gentle while still being effective. You are asked to be compassionate while still being efficient and professional. You are asked to be knowledgeable while still bowing to the authority of others. You are asked to go wherever you are called, and you are asked to do what many today would not do, could not do, and to do this willingly and comfortably and warmly. So in the name of those who have been in your care and who presently are in your care, I honor you for who you are, for the work you perform, for the spirit you spread, and for the graciousness with which you spread it. On their behalf I thank you for bringing your smile into the dreariest of days, for caring your hope into the bleakest of circumstances, and for holding out the possibility that dying can be rich with living and with loving. On behalf of patients and families whose lives you radically improve, I thank you for all the listening you do- it’s ever so life-giving; for all the understanding you convey- it’s ever so life-affirming; for all the acceptance you provide- it can be life-changing. I thank you for those times when you provide excellent care, even when you’re exhausted; for those time when you remain where you are, even when you wish you could flee; for those times when you allow your quiet presence to do exactly what’s needed, even if you wish you could do more. I thank you for the extra energy you expend in being sure you care for yourself, knowing that’s the only way that you stay replenished for others. I thank you for doing all this while keeping homes and raising children, while caring for parents and maintaining love relationships, while making room for serendipity and for sacredness in your life apart. Especially I thank you for searching for the face of God in every person you care for, and for finding that face, and for honoring it each time you find it. Because as you do, you enable that other person to see that face too- in you. - James E. Miller One of our Chaplains used this affirmation in her Blessing of the Hands ceremony. What a sense of rightness permeates that affirmation. I pray that each of you Chaplains feels inspired having read that.
Wednesday, September 10, 2014
Daniel Darling, Senior Pastor of Gages Lake Bible Church, peeled back the curtain of his life when he shared a slice of his life as he dealt in a not so successful way with inter-personal conflict in the November, 2013, issue of HomeLife: I was having a particularly rough day at the office, and I carelessly left a weapon lying around — my email inbox. Chafed at a colleague who publically embarrassed me in a team meeting, I composed a bitter and sarcastic email and, without hesitation, clicked Send. Then I propped up my feet on the desk and waited for the smoke cloud to rise from the office of my perceived enemy. I didn’t have to wait long. Jim, a veteran leader, called me and said, “Dan, I can tell you’re upset. Why not come over here and let’s talk about it?” As I walked across the church campus to his office, my heart sank into my stomach. Regret washed over me in waves. Jim didn’t deserve the treatment I gave him. As I entered his office, I spoke first: “I’m sorry.” Thankfully, Jim’s good spirit diffused what could have been a tense situation. I know that my hasty email damaged our relationship. Following that exchange, it took months to restore the trust we’d previously shared. His personal transparency is appreciated as her further attests, I wrestle with how to navigate conflict. Don’t we all? Conflict arises from differences, both large and small. It occurs whenever people disagree over their values, motivations, perceptions, ideas, or desires. Sometimes these differences appear trivial, but when a conflict triggers strong feelings, a deep personal need is often at the core of the problem. These needs can be a need to feel safe and secure, a need to feel respected and valued, or a need for greater closeness and intimacy. The culture of 2014 is filled with tension and fear. People today fear failure, losing their job, and societal issues (such as, healthcare or lack thereof; the economy; terrorism). Your colleagues come to work every day carrying emotional baggage from any number of sources. Perhaps it was an argument with a spouse or teenaged child, or an awareness that their personal finances are not doing well, or a concern that their car might not make it through the day and repairs are unaffordable, or from some other stressor. They are emotionally vulnerable. It would not take much to push them over the edge. You’ve noticed they are distant or at least not like themselves. Their words are few, their sentences short. They don’t make eye contact much if at all. When they talk about the company it is negative. Nothing is good. It is all bad. Their perception is that no one cares about them. And, then, it happens. The wrong thing is said or something is said with a tone that conveys a harsh message. Their defenses shred. And, they react. A conflict is birthed. Is the person with whom you are having conflict your opponent or your partner in the cause of hospice? The win-win approach says, “I want to win and I want you to win.” This statement is not easy to come to when in a high stakes conflict. However, if there is to be a win-win, then several things must be present in your demeanor: • Self-awareness—What emotional baggage am I influenced by in this conflict? Is there unresolved conflict that is influencing my emotions? Is there other ‘stuff’ influencing me at this moment? • Needs—What are my needs in this conflict? Must I win at all cost? Do I own any of this conflict or am I a victim of the other person’s need for power and control over me? Your answer to that question will determine if you really want a win-win or win-lose outcome. • Big picture—What is the bigger picture? Am I and my need to win this conflict bigger than the bigger picture? The answer to that will determine if conflict resolution is even possible. What are the needs of the person with whom I am in conflict? Have I considered his or her needs? It’s a good thing to do if you desire a win-win outcome. • Target of attack—In approaching conflict, the target is key. The win-win approach has as its target the problem, not the person. “Solve the problem at hand, salvage the relationship if at all possible” is the motive behind the win-win approach. There are other approaches to conflict resolution, but the win-win approach seems to fit the focus of this study. Humility, ownership of responsibility, and integrity on the part of the Chaplain will go a long way to resolving conflict. Does this suggest a “happily ever after” outcome? Absolutely not! There are situations when a conflict has deteriorated a relationship to the point that a working relationship is no longer possible that one of two options exist: re-assignment or resignation. Re-assignment brings relief, albeit, temporary relief because there will be new people and new conflicts. The key benefit of re-assignment is that is gives time for healing and rekindling of passion to succeed in the work of chaplaincy, and it also brings the sense of reality in that there is an awareness that no one can go from one re-assignment to another to another. That type of thing leads to the belief that conflict resides with the person re-assigned. Resignation ends the relationship permanently with no hope of resolution. This is a last resort measure. Resignation fosters the following: victim mentality, self-righteousness, avoidance of responsibility, future problems with relationships, let alone unemployment. No, resignation is not the best solution. Conflict resolution is never easy and shouldn’t be. However, it is a gateway to personal growth. Bless you, Chaplains, for all you do in providing supportive care to patients at the end of their lives.
This quote is attributed to the late John Wooden, “It's the little details that are vital. Little things make big things happen.” That is never more true than in a hospice Chaplain’s documentation. I can’t stress it enough the imperative that every Chaplain include in his or her Clinical Note a pain score based upon an applicable pain scale and a statement of decline. We are in a day when Medicare is scrutinizing hospice closely. As a member of the IDT, the Chaplain is looked upon to hold her end of the load. Clinical excellence is expected. What is your process for writing a Clinical Note? I am providing a checklist of sorts to remind you what should be included in every Clinical Note: Chaplain Clinical Note 1. Description of the patient: 2. Spiritual pain issues raised by patient: 3. Interventions Chaplain used to address spiritual pain: 4. Pain observations: What number? What scale? 5. Safety issues observed: 6. Patient’s response to the visit: 7. Collaboration: 8. Observations of decline: Big MAC observations 9. Subsequent visit: 10. Signature: This seems to be a cause for heartburn for some Chaplains because the Note is electronically signed. However, it is always appropriate and important for the Chaplain doing the Note to sign it. The details of your work can and do make a big difference. Thank you for your compassionate ministry to your patients. You do make a difference. Bless you, Chaplains, for who you are and what you do.
Tuesday, September 9, 2014
The minister coming into hospice chaplaincy from the pastorate faces several blessed liberties: He/she can set personal boundaries … without guilt or condemnation; He/she works on a set schedule of when to start work and went to end work … without feeling a need to explain why work ended at 4:30 or 5 PM; He/she can take a weekend or two or three to enjoy downtime … without feeling guilty or as if your commitment to God was suffering. Several things I have noticed about former pastors: they are natural born Pleasers; they are given to guilt over non-essential matters; they are protective of themselves. They also are very good at concealing their insecurities. I was at a church recently and made an observation that disturbed me greatly. My wife and I walked past one of the ministers’ wives and I noticed the look of fear and uneasiness on her face. Perhaps she was having one of those days. My better judgment is that she is a barometer of what the church has done to her or her minister husband or to her school-aged children. Church can be a toxic place for ministers and their families. Men, being men, can compartmentalize things and trudge ever onward. Not so much their spouses. How would I know this to be true? For 25 years I served as a Senior Pastor. Let’s return to the original topic of personal boundaries. Let me list several key boundaries that are absolute musts: 1. Do not feel compelled to do funerals or memorial services on the weekend. You are the Chaplain, not the Pastor. Work with the family to have a service on a weekday. If you feel you must do the funeral/memorial service suggest an evening, but not a weekend. That is your time to recuperate from the spiritual drain of the work week. Protect it. Protect yourself. 2. Do not give your work cell phone number to a patient or family member. Let them know early in your relationship with them that if they need you to call the hospice number and your Team Assistant will get in contact with your with any message. Again, it is your responsibility to protect your time and not receive calls after hours from patients or family members. There is an on-call Chaplain to take calls after hours. 3. Begin your day on time and end your day on time. There are no extra points given for those who start early and work into the night. There is no Church Board or Deacon Board or any other board that is going to call you in for a stern talking to for not working 100 hours in a week’s time. 4. You are no longer the solver of everyone’s problems. The challenges you face with patients and their families have been there long before you came into their lives and there is just not enough time to “fix” them. You are not called to be a “Fixer”. You are called to be a Chaplain. Function in that role to the best of your ability and do not feel guilt because you can’t fix what you perceive to be broken. 5. You no longer are expected to be all things to all people. You are you. Be the best ‘you’ you can be. You are allowed your opinion. You are allowed to express concerns. You are allowed to disagree. Again, no board of any kind is going to call you in. Your emotional health is a necessity in hospice chaplaincy. Getting free of the chains that bound you and the ghosts of “What ifs” are now gone. You can embark on performing ministry in its purest sense. Relax, be the minister you envisioned yourself being when you first started out. The transition from the parish pastorate to the hospice chaplaincy will take upwards or a year to a year and a half. Once you have made that transition, you will walk and live in great freedom. Setting boundaries around your time, your activities, and your total self will come very naturally from that time forward. And, one more thing, be a source of encouragement to your pastor and spouse. They need you. Yes, I have made the assumption that you will attend worship somewhere. That is vital for your own spiritual growth and well-being. That is a boundary as well. Blessings, Chaplain Colleagues, for who you are and what you do.
Monday, September 8, 2014
The Chaplain is the one to provide the emotional and spiritual support to the patient when there is the devastating, back-hand of an answer to a humble request of “I know what I did was wrong, please forgive me.” That answer leaves the patient and in other cases, the caregiver all discombobulated… emotionally and spiritually. What is the Chaplain’s response to the brokenness of the patient? Let’s review the circumstances… First, what does it take to bring a hospice patient or, for that matter, any person to the point of seeking forgiveness? I think I can speak to this because, like you, I have had to ask for forgiveness from those I have wounded. It is a personal epiphany of the extent of failure, the awakening that what was done was so wrong that it damaged people I love, and that humbling oneself was far secondary to seeking to right the wrong. Has any of you been denied what you requested? I have. If you can recall the pain of having been told, “No, I won’t forgive you”, then you can compassionately identify as you provide support to the patient reeling from that denial. Brokenness responds to brokenness. How have you worked through your denied request for forgiveness? Counter-transference is not a healthy thing. C.S. Lewis helps us out when he wrote: “I pray because I can’t help myself. I pray because I’m helpless. I pray because the need flows out of me all the time, waking and sleeping. It doesn’t change God. It changes me.” How does this statement inform your life? “It changes me.” Hearing those words drains the infection off of the wound allowing me to heal. It is never a pleasant experience to come to the place of deep humility, bare your soul and in that position of vulnerability seek a rightness where there was only wrongness and have it all pushed aside and denied. We all pray because we are helpless. Working through this type of pain is something only God can do. Out of the richness then of your experience with God are you able to provide a balm to the deeply troubled soul of your patient. God has a lot of experience with people who have said, “No”, to him. I hope you have noticed that I did not provide a simple formulary of “The Three Steps to Helping Your Patient Overcome the Pain From Being Denied Forgiveness.” I don’t think there is such a thing. Life does get messy. The hospice Chaplain is there to help with clean up the mess with the towel of humble service. Blessings to you this day, Bless Chaplains.
Thursday, September 4, 2014
In recent days I have enjoyed reading two parallel books: “The Wounded Story Teller”, by Arthur Frank and “The Wounded Healer” by Henri Nouwen. Both books are excellent reading for a hospice Chaplain. There are two quotes, one from each book that I find instructive to my own life and ministry. The first is from “The Wounded Healer”. "Nobody escapes being wounded. We all are wounded people, whether physically, emotionally, mentally, or spiritually. The main question is not "How can we hide our wounds?" so we don't have to be embarrassed, but "How can we put our woundedness in the service of others?" When our wounds cease to be a source of shame, and become a source of healing, we have become wounded healers.” A major wound in my life occurred when I was 10. It was a cataclysmic event… my father died. He was but 46 years old. His death changed my world, the world of my Mother, and my sisters. 1964 was part of the June Cleaver era. Mom tended house and the kids. Dad went off to work. From May 24, 1964, until June (not sure what day) 1984 I lived in emotional and spiritual agony never having mourned his death. You see, my grief counsel was simple: “Brave boys don’t cry.” “You are now the man of the house.” As a brave boy, I didn’t cry, but I had no idea how to be the man of the house. This brave boy graduated high school, went off to college, dealt with gut-wrenching pain as he observed his dorm friends and their Dads moving in to their rooms. They joked and laughed. I sighed and walked away. At age 30, my emotions and spirit were both spent. I had to get help. That help came from a counselor/friend, David. He and I went to lunch and I explained to him my pain. His guidance to me was to go back to my office, cancel all appointments, take no calls, and spend my time writing a letter to my father. After that, I was to read it out loud. Awkward turned into passion as I began, went in depth with my feelings and ended the letter. As I read it out loud, the dam burst and for the first time I wept over the death of my father. That wound and its healing form the basis of my commitment to hospice care. My wound has been a source of healing, not just for me, but for those I serve. It is as if the compassion seeps through my body language and verbal language in pastoral encounters. Wanting to communicate the paradox of how we minister to others through our brokenness, he took a cardboard box and asked his students to “beat it up”. They punctured holes in the box, kicked it around and tore pieces off of it. Then he placed the box on the table in front of them all. Underneath the box was a light. He dimmed the house lights, and then turned on the light inside of the box. He didn’t need to say any more. They all understood. The light of Jesus shines clearly through our broken places. The Good and Beautiful God by James Bryan Smith (page 163) Arthur Frank approaches life from a very different perspective, but one that the religious/spiritual person can relate to and grasp. In his Preface, he comments: “The figure of the wounded storyteller is ancient: Tiresias, the seer, who reveals to Oedipus the true story of whose son he really is, has been blinded by the gods. His wound gives him narrative power. The wound that the Biblical patriarch Jacob suffers to his hip while wrestling with the Angel is part of the story he tells of that event and it is the price of his story. As Jacob tells his story to those he returns to—and who else could have told it?—his wound is evidence of his story’s truth.” My experience as a Chaplain affirms that there is healing in storytelling. How many times have I sat silent, but intent on listening to the story of the patient, and at the close of the visit, that patient thank me for all the “help” I provided that day. I said little to nothing, but heard that patient tell his or her story. It was their story that brought the “help”. There is something special about articulating one’s story…painful story, reminiscence story, reconstructed story, illness story, or a story that defies being categorized. It is my hope that these two books will bless and inform your chaplaincy.
Wednesday, September 3, 2014
The behind the scenes experiences that go on in the lives of family caregivers of patients with dementia can be traumatizing. Alzheimer’s aggression is not uncommon. Where does this leave the Chaplain? How does he/she respond to the family caregivers as they try to process the rage that explodes all over them in such an experience? The caregivers, no doubt, are already weary and could very well be worn out. They need the Chaplain to just listen and empathize with them. A gentle suggestion of respite care might be in order, but an empathetic presence is always in order. As you read the following story from “A Place for Mom” (http://www.aplaceformom.com/senior-care-resources/articles/alzheimers-aggression) ask yourself how you would be that empathetic presence for this family. Charlie Powell feels like he lost his dad a long time ago. His dad, who has Alzheimer's disease, doesn't just forget who Powell is-he sometimes becomes violent. "Once, me and mom disabled his car so that he couldn't drive it, and he soon realized what we'd done," Powell, 50, says. "He rushed across the living room and literally growled at me like a bear in the most frightful way. Thirty seconds later, he didn't know he'd done it, and everything was fine." The "bear incident" is just one of many that eventually caused Powell and his family to put their 86-year-old father into a nursing home. "Once, the doctors noticed that mom's eardrums were both ruptured, and they realized dad probably slapped her upside the head and cupped her ears." Unfortunately, Alzheimer's aggression is fairly common among Alzheimer's patients. There's cursing, hitting, grabbing, kicking, pushing, throwing things, scratching, screaming, biting, and making strange noises. More than 4.5 million Americans are diagnosed with Alzheimer's disease every year, and up to half can show some of these behaviors. The number of total Alzheimer's sufferers is projected to balloon to 16 million by 2050. Alzheimer's aggression is one of the main reasons most people put their parents in nursing homes. Fortunately, new medications and coping methods can help, though agitation and aggression are still a misunderstood aspect of Alzheimer's. "The public thinks Alzheimer's is a memory disease," says Dr. Ramzi Hajjar, a geriatrician at St. Louis University in Missouri. "But, in fact, there are lots of neuropsychiatric symptoms. Alzheimer's patients often develop delusions. They think their family is stealing things from them, for example. And they get very aggressive and irritable towards their spouse." He stresses that families need to always remember that Alzheimer's aggression really has nothing to do with them. "The child always wants to take it personally, which causes unnecessary anxiety," Hajjar says. What's Behind the Behavior? No one knows for sure why some Alzheimer's patients lash out and others don't, but one University of Kansas study showed that recognition was the strongest predictor. Forgetting what something was, or what was inside something, was the most common cause of aggressive behavior. Other studies have shown that Alzheimer's patients sometimes act out because of side effects like headaches, constipation, and nausea from some anti-anxiety medications such as Xanax® (alprazolam), Ativan® (lorazepam), and BuSpar® (buspirone). Patients who can't communicate often express their discomfort from those symptoms by becoming even more agitated and combative. The first step in managing difficult behavior in the care for Alzheimer's patients is to find out where it's coming from and what it means. Does the agitation or combativeness mean the patient is hungry or thirsty or scared? Is it a reaction to something threatening or uncomfortable in their environment? "I've seen people strike out because of their distress," says Dr. Ruth Tappen, director of the Louis and Anne Green Memory and Wellness Center at Florida Atlantic University in Boca Raton, Florida. "Once, a Holocaust victim would have his memories return at night, and he'd get aggressive, yelling and carrying on at his wife; twice he even brandished a knife. He was defending himself from long-gone dangers." Other times, agitation starts when patients get frustrated with themselves, as simple memories start slipping away. They might forget where they put the keys, or what time their dinner appointment is that night. After asking a few times, everyone around them becomes irritated, and they get agitated. But it's sometimes hard to know exactly why some lash out. That's what author Jacqueline Marcell learned, the hard way. Marcell, who wrote the book Elder Rage after an entire year of experiencing her father's Alzheimer's aggression, says she grew to learn what situations would trigger her dad's outbursts. But first, it took a year of doctor visits to even diagnose him correctly with Alzheimer's. Managing and Treating the Aggression Using medications to manage aggressive behaviors in dementia patients is considered very controversial. Doctors have tried using traditional (first-generation) antipsychotic drugs such as Mellaril® (thioridazine) and Haldol® (haloperidol), but their effectiveness was limited and carried some unpleasant side effects such as vomiting and nausea. Atypical or second generation, antipsychotics (such as Seroquel® and Risperdal®) have been found to be somewhat more effective in reducing behavioral problems, but they have not been approved for use in dementia patients by the FDA. In fact, the FDA has issued a warning in April, 2005 regarding "atypical" (second generation) antipsychotics in dementia patients. The warning states "that older patients treated with atypical antipsychotics for dementia had a higher chance for death than patients who did not take the medicine." Because this warning does not actually prevent doctors from legally prescribing these medications for this type of "off-label" use, it is extremely important that families understand the potential risks involved and proceed with caution. Fortunately, drugs aren't the only answer. There are other ways that you can improve your situation. The following are some techniques and strategies that have helped many people successfully care for Alzheimer's patients and manage the Alzheimer's aggression: Label and use signs, suggests Beth Nolan, PhD, author of the University of Kansas recognition study (see above: What's Behind the Behaviors). Place signs on rooms to say what they're for, put name tags on guests when they visit, and put labels on common items, like clocks and telephones. Tape explanatory phrases on doors or cupboards to tell them what's inside. Know what the triggers are, and try to divert them. Typical triggers include getting people undressed for showers-they find the shower rooms cold and echoing. Or, being in a crowd can trigger the fear of getting lost. "If what you're doing is causing them to react, stop and step away," says Patricia Drea, RN, a 20-year eldercare veteran who works with Visiting Angels, a company that provides in-home care for the elderly. "Then, redirect them to another activity. Say, 'Here, let me help you stand up,' then move them to the next thing you'd like them to do." Try to distract the person with a pleasurable topic or activity. Arguing will make things worse. If necessary, leave the room and give the person time to calm down. Use logic and reason. "When my mom-who also had Alzheimer's-left her watch in the sugar bowl, I didn't accuse her," Marcell says. "Instead, I said, 'Mom, why is there a watch in the sugar bowl?' She'd say, 'I don't know,' and I'd say, 'How do you think it got there?' Using logic helped her a lot." Validate their feelings. Tell them it's OK to be frustrated, or sad, or lonely. Use a gentle tone and reassuring touches. Studies consistently prove this works. "Always smile, and look kind and gentle," Drea says. "Your face is an important signal that everything is alright." Stick to a regular routine. This will help minimize the number of unexpected and stressful events. Ignore the angry behavior-if distraction and support do not work. If the situation is threatening, make sure he is unlikely to harm himself and stay clear until he calms down. Maintain a sense of humor. "Anticipating that there will be ups and downs, and maintaining patience, compassion, and a sense of humor will help you cope more effectively with difficult behavior," says Catherine Johnson, PhD, a psychologist who specializes in dementia at St. Joseph's Hospital in St. Paul, Minnesota. "It's important to remember that it's the disease, not the person, causing the behavior." Try music. Sometimes singing an old favorite song can get someone to calm down instantly. The American Academy of Neurology recommends using music to reduce many problem behaviors. They say it's most effective during meal or bath time. If you don't sing, play a song from their old collection. Learn how to debrief after an incident and identify what caused it. Ask yourself, "'What can I do differently the next time, to avoid the aggressive reaction?'" Johnson says. "Learn to resolve the emotional reaction you as a caregiver had. Then, you can move forward effectively. Take care of yourself." Seek support for yourself as a caregiver. Finding support groups and counselors to help you cope is one of the most important things you can do. Not only can you help yourself deal with the difficult times, some of the people you meet may have some useful advice on managing the aggression. Some good places to begin include The Alzheimer's Association (www.alz.org) and the Alzheimer's Disease Education and Referral Center (ADEAR) (www.alzheimers.org). Perhaps the most comforting thing about Alzheimer's aggression is that, for many patients, it's a phase that will pass. While the dementia itself is irreversible and will continue to worsen, for many patients the aggressive behaviors do seem to subside over time. Because this is a phase that can last for years, however, trying to wait it out without dealing with the behaviors is usually not an effective strategy for coping with the problem. For some, the challenges of handling Alzheimer's aggression can become too great, and they may decide that they must place their loved one in a skilled nursing facility. Although this is never an easy decision, those like Charlie Powell know they have done the best they can, and that relying on the professional care available in a nursing home is the smartest choice. "I know my dad is getting the best possible care now," Powell says. "And that's all that matters."
Tuesday, September 2, 2014
One of the most used terms in describing hospice care is ‘journey’. We join our patients on their journey. We make the journey with them… and so forth. What exactly are we talking about when we use the work ‘journey’? A journey is a trek from one place to another. Is it too graphic to state that the hospice journey is a trek from wellness to illness to death? Or from living in health to living in the shadow of death? What then can the hospice Chaplain do to assist this sojourner? Traveling, for me, has often been fraught with taking a wrong turn, getting lost, losing time, going extra miles when I could have saved time by taking the right route. Somehow, I see these characteristics of my travels, as holding true with patients. Could we not liken taking a detour, losing time, traveling extra miles on the hospice journey to denial, emotional distress, anticipatory grief? And, then, can we truly place a value on these very human responses as a waste of time or a delay in the journey? I think not because they are a real part of the journey and the stories told in these junctures are vital to understanding the life of the patient. In the American Book of Living and Dying, one of the key issues of life is ‘meaning.’ What gave the patient meaning and significance in days of health and vitality is no longer the same. Meaning making at the end-of-life something altogether different. The wise Chaplain can explore this with his or her patients and family caregivers. What follows is the story of a husband, wife, and two adult daughters as they made their hospice journey. As you read, pick out the moments when the Chaplain could have provided an Intervention to explore with the patient or his spouse issues of meaning. Also, ask yourself what difference could the Chaplain have made with this family. My husband Tom was 48 when he was diagnosed with pancreatic cancer. He had a very successful home based business and he was determined that his diagnosis would not slow him down. We had two children together, Carrie who was 20 and Kevin who was 21. He had a "successful" surgery in the month after his diagnosis in June, but by July mets to the liver were discovered so he began a series of chemo treatments in hopes of slowing the disease progression down - but nothing seemed to work at all. In the meantime, Tom and I tried to lead as "normal" a life as possible. We both still worked, took hikes, dinners out, a few short trips, and in general just kept hoping that something would finally work. He continued to decline and the disease to progress, but Tom was amazingly strong and rarely let the disease get to him. In fact, it now seems that he wasn't letting the doctors or me and our kids know how much the disease was taking over. He was always optimistic that another treatment would slow the disease progression down. But nothing did slow it down. Initially we had some hypothetical discussions about the end. Early in Tom's illness he started talking about cremation and how he wanted to have his remains divided between the two kids for them to each take to some special place. For example, he wanted my son - who is an extreme skier - to throw the remains off a high ski jump somewhere out west. We tried to go along with him, though we didn't even want to talk about the end since we were all so optimistic that something was going to come along to "cure" him from the cancer. Well, over the next several months, my daughter (who is in college) got emails from Tom with his latest thoughts on where he should end up. The last email she received on this subject showed that Tom had changed his mind about his remains being divided - that suddenly didn't seem right to him - but he didn't provide us with where he did want to be. But the vast majority of the time he denied the seriousness of his disease. I really believe that he was so determined not to let the disease win that he denied and denied that it had advanced so far, to the point that it caught him by surprise as much as us. The month of December he was feeling lousy. But he was still doing a little work out of the basement office but feeling very tired and having trouble eating He was still looking forward to a new clinical trial that was to start the first week of January We had an appointment on December 22nd to see the oncologist. During the appointment it was made clear that the doctor thought things were going downhill quickly. He told him that at this point he could only treat his symptoms and gave him an IV that afternoon. The doctor told me he expected Tom had about 2 weeks left. We talked very little about it on the way home. That evening he was very tired and depressed. Carrie pointed out to him that the winter solstice was occurring and that the moon was the brightest and closest to the earth as it had been for 100 years. So Tom made an extra effort and he and I went out on the back deck and looked at the moon before he went to bed. The next morning Tom just barely woke up. He was disoriented and couldn't communicate. Several times I found him sitting on the side of the tub in the bathroom when I left the room just for a minute. My understanding is that the disorientation was caused by decreased blood flow to the brain as the body began to slow down. One thing we explored initially was whether the disorientation was due to brain mets. His doctor ordered Decadron for him to reduce swelling caused by brain tumors if there were any. Unfortunately it didn't help. Within hours he had slipped into a coma. We hurriedly got hospice care and the hospice nurse suggested that we might receive some final gifts from Tom. My kids and I were in total shock. Although we hadn't talked about it much we knew the disease was progressing, and the end was coming, but we never expected it to go so fast. The nurse also told us that hearing was the last sense to go so that Tom would be able to hear anything we said. So we talked to Tom and told him how much we loved him for hours and hours. I hope he heard us...in the early hours of his coma he did respond a little bit, but we were unable to understand him. The next day, Christmas Eve, Tom's mother was scheduled to arrive at 10:30p.m. The hospice nurse suggested he would hold on until she arrived. But that was not meant to be. Tom died at 7:30 p.m. None of us had any last words from him, in fact, we never had the chance to acknowledge together that he was in fact, not going to beat this disease. I have felt cheated of the final days that I expected to have when we would share our love for each other and plan to meet in a better place. I have a lot of problems with the lack of closure with Tom. While we had gradually acknowledged to each other that he might not make it, we'd never really accepted it or talked about what it meant. I always thought we'd have a period of time when he was in hospice care when we would talk more and say our good-byes. While I, and my kids-said lots of good-byes and I love yous while he was in a coma, he was never able to communicate with us again. I still replay those last few days over and over and wonder how we didn't know he was so close to the end and wonder if he knew? I keep thinking that I might run across a good-bye note or something like that, but I don't think there is one. Although the suddenness of Tom's death has been very disturbing, I have finally come to see this as a gift. He did not experience a long period of pain and hopelessness. Dying on Christmas Eve, as sad and difficult as that is going to make future Christmas Eves, is probably much better than had it been Christmas Day. Waiting for his mother to arrive was probably too difficult for him, it would have made it harder for him to let go-when he was clearly ready to do so. And he and I did share the winter solstice the night before he went into his coma. Final gifts come in different forms. They aren't always the last minute moments of lucidity when good-byes are said. We sure didn't get that, but I have come to feel that we received other messages in other ways. For now, we have put Tom's remains in a basket, wrapped it in the cozy blanket he always used on the sofa, and surrounded it with mementos. Since we are so sure that Tom’s spirit is in heaven and with us, we are able to disassociate that box from the real Tom, but at the same time, use it as a place to remind us of some of our times together. Carrie had a hard time deciding whether to go back to school in January. She wasn't sure if she would be able to concentrate on school, but at the moment she is highly motivated as she is studying cell biology and lining up some lab work in a cancer research project. "Funny" how her dad's disease has helped her find the direction she wants to concentrate on in school. Eleven years ago, my dad died of leukemia and a side effect was that my sister decided to go to medical school at age 32! I went back to work in mid-January and that keeps me really busy and distracted. But that isn't enough. I try to figure out what I'm supposed to do with my life now that my much loved husband is gone. He and I did just about everything together and we were just getting to the point of planning our retirement and now I don't have a clue what to do. copyright 2000 Susan Peticolas Lahti