Providing Spiritual Care According to Disease Process: Cardiac

Providing Spiritual Care According to Disease Process: Cardiac Heart failure patients are a rapidly emerging hospice population. While cancer patients still comprise the largest disease group in hospices, they account for less than 50% of patients while a rapidly growing population is the group with heart disease (Caffrey C, Sengupta M, Moss A, Harris-Kojetin L, Valverde R. Home health care and discharge hospice care patients: United States, 2000, 2007. National Health Statistics. 2011;38:1–28). Cardiac disease is the second most prevalent medical diagnosis, accounting for 14% of hospice admissions nationwide, with heart failure being the most common designation (National Hospice and Palliative Care Organization (NHPCO) NHPCO Facts and Figures Hospice Care in America, 2012). Research indicates patients experience sustained symptoms of shortness of breath, edema, dry mouth, fatigue, pain, anxiety, sadness (Zambroski CH, Moser DK, Bhat G, Ziegler C. Impact of symptom prevalence and symptom burden on quality of life in patients with heart failure. European Journal of Cardiovascular Nursing. 2005;4(3):198–206) and depression that adversely impact quality of life (Bekelman DB, Nowels CT, Allen LA, Shadar S, Kutner JS, Matlock DD. Outpatient palliative care for chronic heart failure: A case series. Journal of Palliative Medicine. 2001;14(7):815–821). Importantly, depression is a common co-morbidity among heart failure patients that is frequently overlooked (Ferrell BR, Coyle N. Oxford Textbook of Palliative Nursing. New York: Oxford University Press; 2010). These salient points were brought together by Johanna Wilson, MSN, PhD Student and Susan McMillan, Ph.D., ARNP, FAAN in their article, Symptoms Experienced by Heart Failure Patients in Hospice Care, located in the Journal of Hospice and Palliative Nursing, February 1, 2013; 15(1): 13-21. The prepared Chaplain will listen for clues to indicate the patient is suffering from a depressed mood, anxiety, and/or sadness. From my experience with cardiac, hospice patients that tears often are part of a pastoral encounter. It seems that the patient experiences an intensification of negative or regretful events in his or her life. This can be termed guilt or shame. The wise Chaplain will use the expression of these feelings to explore what is behind the deep sense of remorse or guilt and seek to assist the patient to find absolution or resolution of the guilt. Since cardiac patient can feel isolated and have a need to be around people, the people most closely associated with the patient, the family, need to be educated by the Chaplain about the emotional and spiritual challenges the patient is experiencing. This education is to provide the family with understanding for what their loved one is going through that they may provide a strong support system. Should the Chaplain be called upon to pray for the patient, prayers dealing with the themes of hopefulness, well-being, the presence of God in the midst of suffering, God’s love, God’s mercy, God’s forgiveness, God’s taking our guilt and shame are all sources of comfort and encouragement to the cardiac patient. Listen, love, and enlighten both the patient and the family and your hospice chaplaincy will be blessed with this growing segment of the hospice population.

Providing Spiritual Care According to Disease Process: Dementia

Providing Spiritual Care According to Disease Process: Dementia Before we even consider providing spiritual care to patients with dementia, we need to examine the pastoral care challenges this particular malady brings. Few Pastors and Chaplains have taken any continuing education course on providing spiritual care to patients with dementia. This leads to insufficient preparation for providing pastoral care to these persons. Most Chaplains are comfortable providing care for the caregivers of the dementia patient but are much less comfortable with the patient. This sense of unease leads Chaplains to wonder if their prayers are understood by the patient or if the Scripture readings or the words of consolation are even heard let alone appreciated. The result often is for the Chaplain to close out a care plan and move on to another more lucid patient. One’s theology of pastoral care will definitely determine the level of involvement the Chaplain will endeavor to provide for these persons. It is at this point that I would like to encourage my readers to do a little reading on this subject. Please take a few moments to read, “My Journey Into Alzheimer’s Disease” by Robert and Betty Davis. This book will give you some insight into the disease process and how it affects the patient and his or her family. Let me put it to you clearly, you must have specialized training in providing spiritual care to patients with dementia or else you will throw your hands up in the air in frustration. That is why I developed and patented The Communication Care Kit. Through years of experience and research I was able to put together a method that works in providing spiritual care to my patients. It would be nice to say it works 100% of the time, but it doesn’t. However, this method of care does work many times and that makes the work worth it. I am in the process of training the Chaplains at Cornerstone Hospice how to use the Kit. For now, my counsel to you is to get knowledgeable about this disease process.

Providing Spiritual Care According to Disease Process: COPD

Providing Spiritual Care According to Disease Process: COPD According to the COPD Foundation (http://www.copdfoundation.org/What-is-COPD/Understanding-COPD/What-is-COPD.aspx): “Chronic Obstructive Pulmonary Disease (COPD) is an umbrella term used to describe progressive lung diseases including emphysema, chronic bronchitis, refractory (non-reversible) asthma, and some forms of bronchiectasis. This disease is characterized by increasing breathlessness.” Drs. Barry D. Weiss and Ellyn Lee, College of Medicine, University of Arizona, inform us that chronic lung disease is the 4th most common cause of death among older adults in the United States. Each year, more than 140,000 older Americans die from direct complications of chronic lung disease, and another 70,000 (many of whom have chronic lung diseases) die from influenza and other lower respiratory tract infections. The vast majority of these individuals with chronic lung disease have chronic obstructive pulmonary disease (COPD). There are key qualifiers for the patient to be admitted to hospice care: Life limiting illness with a prognosis of less than 6 months; dependence in 3 of 6 ADL’s; Palliative Performance Scale <50-60%; >10% weight loss over the last 4-6 months; multiple hospitalizations or ER visits; decreased tolerance to physical activity; decreased cognitive ability; other comorbid conditions. Specific to the COPD diagnosis: Dyspnea at rest or with minimal exertion; continuous oxygen therapy; >10% weight loss in 4-6 months; recurrent pulmonary infections (bronchitis or pneumonia); cor pulmonale; FEV1 <30% post broncholdilator; P02<55 or O2 sat <88% (on room air); persistent resting tachycardia; and progressive decline in the ability to perform ADL’s independently. As one can see, when a COPD patient enters hospice care he or she is suffering severe complications due to the disease process. As a result, there are significant and compelling spiritual care concerns, such as, depression, sadness, anxiety, fear, mourning over loss of ability to thrive, and strained relationships with significant others. A Chaplain’s supportive presence coupled with attentive listening (when the patient is able to converse) will set the foundation for spiritual support. Sensitivity to the patient’s breathlessness is always called for. Time spent actively listening to the caregiver/family member will lessen his or her sense of frustration, anger, or other feelings toward the disease and/or the patient. Case Example Patient: 63 year old male who was a Veteran of the Marine Corps Diagnosis: COPD Presenting Spiritual Care Concerns: Anger, Self-chosen alienation from loved ones This patient was not interested in seeing the Chaplain. I came to find out later why that was so. His wife desired spiritual, however. She was worn out by the extensive support her husband required and the constant attention he demanded. His COPD was severe to the point he could not speak more than a sentence at a time. When I arrived at his home, I would simply stick my head in to his room (after confirming with his wife that that would be alright) and say Hello to him. He rarely responded in any way. The turning point in the pastoral care relationship came when I conducted a Veterans Pinning Ceremony. I presented him with a pin, a certificate, and a teddy bear. In following visits, I noticed that the teddy bear was attached to his wheelchair and was his constant companion. He told his wife he would like to speak with me. He told me that he was not interested in a Chaplain because he thought that meant he would be told off for being a bad person. I assured him that was not my purpose, but, instead, I would be supportive and encouraging. Our visits together were short, but positive. He had questions about forgiveness and his anxiety. We worked together on those issues. He died of pulmonary complications.

Providing Spiritual Care According to Disease Process: ALS

Providing Spiritual Care According to Disease Process: ALS Brief Synopsis of the Disease A person with ALS usually has problems in dexterity or gait resulting from muscle weakness, or with difficulty speaking or swallowing. According to Drs. Gordon R. Kelley and Stanley J. Swierzewski, III, “sphincter control, sensory function, intellectual ability, and skin integrity are preserved. Patients become paralyzed and often require ventilation and surgery to provide a new opening in the stomach (gastrostomy). Loss of respiratory function is ultimately the cause of death for people who have ALS.” (http://www.healthcommunities.com/als/overview-of-als.shtml) The ALS Association indicates that “most commonly, ALS strikes people between the ages of 40 and 70, and as many as 30,000 Americans have the disease at any given time. ALS has cut short the lives of other such notable and courageous individuals as Hall of Fame pitcher Jim "Catfish" Hunter, Senator Jacob Javits, actors Michael Zaslow and David Niven, creator of Sesame Street Jon Stone, television producer Scott Brazil, boxing champion Ezzard Charles, NBA Hall of Fame basketball player George Yardley, pro football player Glenn Montgomery, golfer Jeff Julian, golf caddie Bruce Edwards, British soccer player Jimmy Johnstone, musician Lead Belly (Huddie Ledbetter), photographer Eddie Adams, entertainer Dennis Day, jazz musician Charles Mingus, former vice president of the United States Henry A. Wallace and U.S. Army General Maxwell Taylor.”( http://www.alsa.org/about-als/) The person we are most concerned about in this article is the patient you are providing spiritual care for. The Nature of this Disease Demands Knowledge and Expertise ALS is a complex disease as you can tell. It has been a challenge for me to stick to the very basics when characterizing ALS. The Hospice Chaplain will have to do much in depth reading and study to gain an understanding of what the patient is experiencing and, also, what the caregiver(s) are experiencing. I am not stating categorically that a novice Chaplain will fail in providing ministry to the patient because our first priority is to provide an environment of loving support. It is assumed a Chaplain of any level of experience can do that. However, the Chaplain must be prepared for discussions about suicide, the character of God, theodicy, and reconciliation with others to name a few. In providing spiritual support for the spouse/caregiver, inter-active listening skills must be at their best as she will have the need to vent her frustration, her fatigue, her anger, her bewilderment at how this could have happened to her husband … and to her. Perhaps three pastoral encounters will illustrate the challenges the Chaplain will face. In Pastoral Encounter 1: The patient was a male; in his 60’s; a leader in law enforcement and politics. He was accustomed to being in control of other people and his circumstances. His wife was demure and supportive. As I came to know him more, it became clear that he struggled to accept his physical limitations. His mind was unaffected by the disease, but everything else was severely diminished. He would often talk of his four attempts at suicide. Soon after he received the diagnosis of ALS, he attempted to shoot himself, but his wife interrupted him and he failed. This suicide scenario played itself out three other times. Each time, his wife or family friend interrupted him. He bore great resentment toward his wife and friend. His treatment of his wife was tinged with meanness and acrimony. Yet, she faithfully met his needs and did everything possible to prevent him from getting bed sores and other skin breakdowns. However, in my pastoral encounters with her, she was filled with hurt and tears. A watershed event occurred one day as she left the home to retrieve the mail. As was her practice, she turned her husband’s wheelchair toward the picture window so he could watch her walk down the driveway to the mailbox. This time, she tripped and fell on her right side and broke her hip. Because of the time of day, neighbors were not home to hear her cries for help. She lay in the driveway for two and a half hours before a repairman discovered her. All the while, her husband watched in tortured emotional agony. He wept and screamed and prayed. From that event forward his treatment of her changed to a loving and appreciative manner. Toward the end of his life, he desired to forgive a number of people and also desired to seek forgiveness from his family. We talked about forgiveness on a couple of occasions. He was able to seek forgiveness from one of his daughters. The other children were not accepting of his offer. He died because of respiratory complications. Pastoral Encounter 2 involved a married woman in her 60’s. She felt betrayed by her body and by God. She wanted healing so badly. She could not understand why when she was the happiest in life this disease had to strike. Her religious background left her guilt-ridden because she had not been to church in years. She did not feel worthy to pray. Her current marriage was her 3rd. The church rejected her for this and would not provide the sacraments or ministerial support. There were family dynamics: The spouse would leave the home whenever a hospice staff member would come by. The bond of marriage appeared weak. She was alienated from her son and daughter. There came a time during her last year of life when she reconciled with her son. He became very close to her until her death. The daughter lived out of state. She came for a week’s visit. During that time she and her mother reviewed and attempted to resolve past issues. After the daughter left, she was not heard of again. The patient died of respiratory complications. Pastoral Encounter 3 involved a young adult male who lived with his mother in a mobile home park. There were multiple dynamics that made this case complicated: he was very angry at God because he was going into the ministry when he was diagnosed with ALS. How could God ask him to serve and then strike him with this disease? At first, his mother did not permit me to see her son as she was afraid of what he would say. She had her own issues to deal with … close to retirement age, confused spiritually as she tried to accept this disease and her son’s impending death, trying to deal with the remnants of a broken marriage, and trying to simply live out what she believed was her faith journey. I spent many hours listening to her pour out the pain within her heart. Unfortunately, by the time I was able to gain access to the patient, his ability to speak was gone. He attempted to use a computer to communicate, but that did not work. I sat with him in silence … which he accepted and acknowledged as something he liked. The patient died of respiratory complications. These pastoral encounters demanded my best in pastoral care skills. There were times when I felt inadequate for the task; confused with my own understanding of theodicy; and, very aware of how fragile relationships can be. I wish for you the best as you provide skilled pastoral care to patients suffering with ALS and their families who journey with them. Take encouragement from a sentence from a really good article in The Gerontologist, Vol 42, Special Issue Ill, 24-33, “A Biopsychosocial-Spiritual Model for the Care of Patients at the End of Life by Daniel P. Sulmasy, OFM, MD, PhD1: “At the end of life, the only healing possible may be spiritual.” And, that has to be enough.

Providing Spiritual Care According to Disease Process: HIV/AIDS The content of this articles will not provide a compendium of information about the disease process, but a summation. Please consult your IDT Physician for more complete information about the disease process. Symptoms of AIDS in the Hospice Patient (based upon the AIDS.gov information) In the late stage of HIV infection, people infected with HIV may have the following symptoms: •Rapid weight loss •Recurring fever or profuse night sweats •Extreme and unexplained tiredness •Prolonged swelling of the lymph glands in the armpits, groin, or neck •Diarrhea that lasts for more than a week •Sores of the mouth, anus, or genitals •Pneumonia •Red, brown, pink, or purplish blotches on or under the skin or inside the mouth, nose, or eyelids •Memory loss, depression, and other neurologic disorders. These symptoms have a definite spiritual impact upon the AIDS patient. Some of the spiritual and existential issues AIDS patients experience include: • Fear of rejection • Reduced financial security and employment options • Career loss • Suicide • Anxiety Information a Chaplain Should Know According to the Journal of General Internal Medicine, found online at http://onlinelibrary.wiley.com/doi/10.1111/j.1525-1497.2006.00642.x/full#leftBorder, “the overwhelming majority of participants reported that spirituality is an important factor in their lives, as most indicated some sense of meaning/purpose in their lives and reported deriving comfort from their spiritual beliefs. The majority of our patients with HIV/AIDS belonged to an organized religion but participated more often in nonorganized religious activities (e.g., prayer, meditation). This finding may reflect the possibility that some religious organizations have generally not been supportive of people with HIV/AIDS and thus patients may have felt unwelcome or ostracized in their own communities of faith,16,17,38 or that private religious activities may be more accessible given that formal religious services are often offered only weekly.” The hospice Chaplain needs to be cognizant of the fact that the AIDS patient may not be welcoming of the Chaplain for fear of further rejection. The Chaplain must convey a non-judgmental and non-condemnatory presence. In addition, the Chaplain must convey a non-anxious presence in the face of the disease process. My experience with AIDS patients informed my chaplaincy in regard to interactive and reflective listening. Also, when the patient became emotional and I reached out to hold the patient’s hand, it communicated to the patient that I was not threatened by the disease and this communicated a strong message of love and acceptance to the patient. Discussion Guide for Initiating and Deepening Difficult Conversations A key catch-phrase that hospice clinicians of all disciplines will use is, “It’s not about me. It’s about the patient.” The Discussion Guide will assist the patient to bring reality to the phrase. The University of California at San Francisco published online in HIV Insite, http://hivinsite.ucsf.edu/InSite-KB-ref.jsp?page=kb-03-03-05&ref=kb-03-03-05-tb-03&no=3, some helpful questions and phrases the hospice Chaplain will find useful in providing spiritual care. Getting started "Tell me how things are going for you." "Can you tell me about your understanding of about your illness?" "What is the most difficult part of this illness for you?" "As you think about what lies ahead, what concerns you the most?" "As you look ahead, what do you hope for?" Continuing phrases "Tell me more about that." "Sounds like you're really worried about..." "What do you mean by '__' ('futile,' 'vegetable,' 'hopeless,' 'giving up,' 'everything')?" I trust this article with provide you, the Hospice Chaplain, with a few more tools for your spiritual care tool-bag for the ongoing spiritual care of your AIDS patients. Bless you, Chaplain Friends, for your ministry and labor of love.

The Patient and Suffering

The Patient and Suffering In reading the November 2014 edition of the Journal of Pain and Symptom Management (Vol. 48 No. 5, pages 1004-1008), I came across a powerful article written by Robert J. Vitillo, MSW, ACSW, entitled: Discerning the Meaning of Human Suffering Through the Discourse of Judeo-Christian Scriptures and Other Faith Teachings. I will refer to several passages as I unfold the message of this topic of The Patient and Suffering. This article will serve as the Preamble or Introduction to the larger work of Providing Spiritual Care According to Disease Process. My goal is to present a case for specialized care of patients whose disease process requires a more tailored approach for spiritual care. I cringe when discussing spiritual care with some hospice Chaplains who, when broached with the idea of specialized care of patients according to disease process respond with many variations of “I provide spiritual care the same way for all of my patients.” Even as I wrote that, I felt my own spirit recoil within me. To not grasp that patients are suffering in ways other than that of a terminally ill patient is to provide very ineffective spiritual care. My premise is that certain disease processes affect patients in various and somewhat predictable ways. The sensitive hospice Chaplain will provide care according to the spiritual markers of suffering evidenced by the patient. Vitillo quotes Fr. Kenneth R. Overberg, S.J. from his book titled, “Into the Abyss of Suffering: A Catholic View”: We experience suffering in broken relationships and alienated families, in accidents and disease, in failed dreams and boring jobs, in dying and death.” We can add to that the deeply personal suffering of David in Psalms: “You have plunged me into the bottom of the pit, into the dark abyss.” (Ps.88:7) “Awake! Why are You asleep, O Lord? Arise! Cast us not off forever! … Arise! Help us! Redeem us for Your kindness’ sake.” (Ps. 44:24, 27) “…my soul thirsts for You like parched land.” (Ps. 143:6b) Suffering is real for our patients. At the end-of-life there is a longing among many patients to try to set right relationships, resolve conflicts both internal and external, and deal with the spiritual meaning of what is happening with the disease process that is sapping energy and life away. My invitation is for you to join me in this journey of providing spiritual care according to disease process. Expect two or three entries each week. Blessings to you, Chaplains.

3 Elements of a crucial conversation in a Chaplain on-call visit.

The Chaplain and On-call Visits There is probably no greater challenge for a Chaplain than to make an On-call visit. As I review my on-calls, most all of the visits were to patients/families from another team and I did not know one of them. This made the visits crucial conversations. The key elements of a crucial conversation are: high stakes; lots of emotion; and, differences of opinion. Let’s look at these individually so we Chaplains can gain further insight to these vital on-call encounters. The stakes are high: When you receive your contact through your call center, it is usually for a spiritual care crisis of some sort. The crisis can be a death where there is a complicated grief with a family member(s) not coping at all with the death of their loved one and chaos is in the home or facility; or, a patient who is obsessed with a fear of some sort; or, patients and families in conflict and the Crisis Care nurse believes the Chaplain can assist in sorting through the heightened emotions; or, when there is an existential crisis going on in with the patient or family. These are just a few of the issues a Chaplain can face. Indeed, the stakes are high. The Chaplain does not know the patient or the family and now finds him/herself in the midst of this crisis. Emotions are high. At the time of a patient death, some family members may not experience the news of death in a healthy manner, but may express their sorrow in destructive ways. Since this is an on-call visit, it is after hours. A Chaplain must have full grasp of his or her own emotions so as not to be part of the emotional chaos that is in that house or facility room. Often there are differences of opinion among family members at the death of a loved one regarding funeral home selection (normally already completed, but sometimes a family opts to wait until this is needed … not a good choice), or religious rituals, or something totally unexpected. The Chaplain must have her wits about her for this challenging encounter. In summation, an on-call visit is not for a novice in pastoral care. These type visits require pastoral care skill, excellent listening skills, common sense, conflict resolution skills, and the ability to negotiate a minefield of emotional explosives. Blessings, Chaplain friends, as you carry out your on-call visits with great skill.