Chaplaincy and Pastoral Care in
Advanced Disease Planning
by John Preston Lewis, D.Min, BCC
Introduction
The diagnosis of life threatening illness rattles every fiber of a person's being. One person said after receiving the news of his disease that he felt that he had been a punching bag for a professional boxer. During the time of diagnosis and treatment of advanced disease, the patient is called on to endure what seems to be beyond his or her abilities of coping. The meaning of life is questioned and questioned intensively. As the patient struggles to comprehend all that is happening, the support of family, friends, physicians, nutritionists, nurses, social workers and clergy is very important. The focus of this paper is the support that chaplains can offer to the patient facing advanced disease.
Medicine and drugs may offer hope for control of pain but it is the spiritual realm that offers hope that dying can be an event of growth and peace for the patient and caregivers. Spirituality or a belief system is present in everyone's life. It may be deeply rooted in a traditional faith group or it may have nothing to do with any organized religion. Even those who claim to be agnostic or atheist have a belief system by which meaning in life is evaluated. As Herbert Anderson (1989) states, "all of us have some sort of belief system, religious worldview, or operational theology, by which we seek to make sense of our experience in the world" (p. 142). A person's belief system plays a major role in coping with dying. Spirituality can be a source of strength or disappointment. It can also comfort or bring despair. The spiritual realm is a two-edged sword which requires care in handling when one is facing death. Professionally trained chaplains are of great value in helping the patient and family claim the positives in their spirituality and belief system.
The Needs of the Dying Patient
Having been diagnosed with disease that is no longer curable, the patient faces a variety of needs. The situation becomes an overwhelming plight. The patient and family need someone to sit down with them and help break the dilemma into manageable pieces. The chaplain can best do this by simply being there and demonstrating a willingness to be quiet and sensitive as the patient and family begin to process what is happening to them. The course begins for many with a period of silence. The patient and family are shocked by the diagnosis, literally rendered silent by the magnitude of what they are facing. Even a diagnosis with a likelihood of long term survival forces thinking about dying. Frederick Heckel (1994) even says that the most intense experience of death is at diagnosis rather than at physical death itself. He also draws a distinction between suffering and pain. Pain causes distress whereas suffering brings anguish and touches our personhood. The overwhelming combination of physical pain, family issues, emotional and spiritual distress causes great suffering. After some time of allowing the bad news to sink in, most patients realize that life must go on. They move to demonstrative or expressive suffering.
Expressive suffering is where the patient is able to communicate about his or her suffering. A compassionate listener enables the mute sufferer to find the language of suffering. The chaplain's task is to help sufferers bring to the outside what is happening on the inside. It is essential during this time to treat patients as living persons who happen to be very ill or dying, and not just as diagnoses. Frederick Heckel (1994) in his work with people diagnosed with AIDS describes three phrases or parts that can usually be found in this expressive suffering but his insight is applicable to all advanced disease.
Heckel calls the first part the lament. The patient gripes and continues to gripe! Everything is wrong. The complaining is often exaggerated as a way of moving through it. Fault is found with physicians, nurses, housekeeping, food, and nearly everything else. One patient dryly remarked that the major medical center's reputation that had treated him for his cancer was vastly overrated in his opinion! Physical symptoms can be focused upon to the exclusion of other things.
By listening to a person's complaints, the right is earned to journey further along with the patient. The second part of Heckel's observation is that the patient puts the suffering into actual story form. The story is told of the past. Caring questions and genuine interest on the part of the chaplain are the tools for bringing out the story. Reviewing and telling their life story to another helps them make peace with the past and face their future. Memories allow grieving to take place. Patients and families are allowed to mourn what they are losing to advanced disease.
Illness also has a way of marking time for people..."before I was diagnosed...before my operation...about the time I was placed in the hospital." The illness almost seems to be a pivotal point in their story. Talking about their life also helps them acknowledge that their past is no more. Reviewing one's life can be a tool to help affirm the goodness and joy of a life lived. A sensitive listener will allow the patient to talk about whatever is on their mind. What seems to be insignificant conversation may be opening the door for very serious discussions. It may be unfinished business with other family that needs to be resolved. Perhaps there are lingering emotions about past mistakes.
Fear is an issue for most people. E.M. Pattison speaks of dying in terms of fears; the fear of the unknown, the fear of loneliness, fear of loss of family and friends, fear of loss of identity and fear of regression (Platt and Branch, 1988, p. 128). Sometimes unrealistic fears can be explained and eased. But many times fear becomes part of the suffering that has to be lived through, and the need is for someone to be by his or her side. The suffering itself may lead to resolution or a new understanding of life. Although there are some who hesitate to articulate feelings, it is important for the chaplain to draw out the sharing of the story. Expression of feelings will further enable people to cope with the disease. If feelings remain general and rambling, the dying person cannot make a very orderly assessment about self, because life feels chaotic. If focused through articulation, people can grasp and confront dying better (Burton and Handzo, 1992, p. 109).
After telling the story, according to Heckel, the patient then develops a metaphor of what is happening to them. This is the interpretation of what's going on as the disease is fought. Naturally, this brings up some theological issues. All the questions asked when bad things arise seem to come from the main question of "What is the nature of God's interaction with individual human beings in the world today?" The issue centers around two basic questions. The first is "Does God have the power to intervene and make a difference in peoples' lives?" For those who believe that God can make a difference, the second question becomes "Why doesn't God intervene?" It is easy for a patient to conclude that the cancer resulted because of something either done or left undone (Burton and Handzo, 1992, pp. 38-39). Thus shame and guilt are very common feelings among dying patients.
Guilt is the feeling that one has committed some wrong act, either by commission or omission. The person believes that their sins have come back to haunt them. Shame is a more generalized sense that one does not measure up. It tells a person that they are not worthy of respect or even life. Diagnosis of advanced disease may make the person aware of this dormant feeling. Also, part of shame is confronting one's own mortality (Burton and Handzo, 1992, p. 40-41). While venting these feelings is important, pastoral care offers additional resolution through rituals, prayers, scripture and by simply being there as a representative of God and the religious community. It is most chaplains' experience that generally, patients are most able to use God as a resource when they can focus upon God the comforter rather than God the miracle worker (Burton and Handzo, 1992, p. 39). However, it is important to remember Herbert Anderson's words of warning "It is a great temptation for those who care for the seriously ill to seek to straighten out their theology or system of belief. Even when it may appear to us destructive, we need to be very cautious about challenging the operational theology of the seriously ill. It may be the glue that holds their world together. Our task is first of all to get inside of their world so that we might utilize their own metaphor to help people to live until they die" (1989, p. 142).
If patients are allowed to complain about their illness, tell their story, and develop a metaphor or meaning in their suffering, then they have the opportunity to either conclude that one's life has been meaningful or that movement needs to be made towards setting things right. The future, the person the patient is becoming, can now be discussed. A new identity from suffering develops for the dying patient. The person begins to identify with the new person they are becoming as a result of facing the suffering. A part of this new identity can be hope, a refocused hope which looks at what can be done--finish business, be pain free, legitimize feelings, be a source of strength for your family, and so on. David Callan in comparing hope and denial says,
Denial is a defense mechanism that consists of avoiding the facts, whereas hope accepts painful facts but places them in a wider perspective that includes other, more acceptable aspects of those facts. Hope, to be authentic, must be based on reality, taking into account the obvious meaning of a tragic event as well as additional meanings that a person finds more acceptable. (Burton and Handzo, 1992, p. 41)
Callan outlines three developmental stages for hope and calls the third stage "transcendent hope based on meaning" (Burton and Handzo, 1992, p. 41). Callan asserts that this meaning enhances the patient's sense of mastery and therefore improves coping. Spiritual people have a kind of hope that science does not. This hope helps people move from hopelessness to hopefulness. Many will find hope in the willingness of friends and caregivers to treat them as real persons even though physical functioning and competency may be impaired.
Stories of conversion in whatever way the patient understands conversion often occur during this time. He or she may seek to become part of a community organization or church. Changes in personality often take place. Most become more compassionate and caring while others regress or become bitter and angry. Many times the patient desires to find meaning in the present moment and there seems to be a need to feel useful to family, friends, and others.
Maintaining some control over life becomes important for the patient. Dying makes this a major struggle both physically and emotionally. These needs underline the importance of caregivers treating the patient with dignity, respect and as a person rather than a diagnosis. Brian Lewis says, "In many ways the diagnosis leaves people and families with the ultimate in a sense of lack of control. A therapist who attempts to coerce the family to behave differently, inadvertently usurps even more control from the family and quite literally adds insult to injury" (Burton and Handzo, 1992, p. 70).
Needs of the dying patient change and the chaplain is wise to constantly recheck with the patient. What was a pressing need at the time of diagnosis may no longer be a concern, but a whole new set of problems may have arisen as the patient processes all that is happening. For example, the patient may have said earlier that he or she would always have hope for healing, but now what the patient hopes for has changed. The hope, for instance, may now be focused on the family being cared for in the time of death and grief or being unified once again.
The chaplain also needs to consider the special needs of children and grandchildren during the pastoral care of the dying patient. They need to tell their story and develop their metaphors. Again, being a sensitive listener who asks gentle and probing questions will draw out their story. Doing a life review of the dying with family members serves as a way of helping the story be told by those affected. Use of art or music may enable a person to find expression for feelings that are too painful to confront directly.
Value of the Chaplain
The chaplain is the interdisciplinary team member that is trained to respond to a patient's belief system. Elaine Goodell sees the chaplain as a leitmotif in an interdisciplinary setting. A leitmotif is a short, recurring theme in music or a play that through repeated association can identify a person, situation, or things. It communicates to the listener what is going on. The leitmotif doesn't stand alone and is not the main theme of the music but it does make a valuable contribution (Burton and Handzo, 1992, p. 74). The chaplain contributes to the interdisciplinary team by the strengths that are inherent in the role of the chaplain and by sensitivity and training. Among the strengths of the chaplain is the acceptability to many patients that other professions do not have. It is normal to talk to a chaplain. There is not any reluctance on the part of most people to visit with a chaplain. The chaplain can simply "be there." By presence, chaplains embody and act out the promises of God for God's people. Because people know who chaplains are, they can infer that what they do is motivated by God's concern for them. Chaplains may represent strength from God for them to draw upon in their time of need. The "stigma" that some feel in talking with psychologists or psychiatrists does not exist. Also, it is acceptable for chaplains to take the initiative in visiting with patients.
Another strength that chaplains possess centers around the fact that dying patients, at any stage or phase, are vulnerable not merely to disease and the complications of illness and its treatment, but to questions that may be called ultimate questions. Ultimate questions involve meaning of life, morality of life, relationships to God, and beliefs of life after death. Professional chaplains are sensitive to and skilled in the discussion of spiritual and existential issues. This is a unique role among the helping professions.
Chaplains also offer worship opportunities for patients and families while confined to the hospital, which offers several benefits. It is a connection to something familiar and normal in the outside community. Worship services provide an opportunity for a return to a religious community that the patient or family might have abandoned long ago. It represents in a tangible way expressions of worship and petition to God. Worship gives skilled ministers an occasion to speak of things with patients and family in a group that would be too confrontive one to one. Worship is analogous to a support group (Burton and Handzo, 1992, p. 33).
Rituals of the institutional church such as baptism, communion, and prayer represent a tangible tie to a person's tradition, community, and God. Prayer and other rituals can tap into something deep within the patient that can be of great benefit in the battle with advanced disease. The chaplain uses clinical expertise to offer prayer and ritual in a way that will maximize the patient's and family members' ability to employ these powerful tools in coping with dying (Burton and Handzo, 1992, p. 35). Of course, patients' belief systems differ. Theological talk will involve feelings about God and the content of the patient's belief system. The chaplain will need to be flexible in order to work within individual belief systems. The chaplain must be able to understand at least the outlines of the patient's faith group and recognize the patient's coping pattern. Then the chaplain can help that patient maximize the pattern's strengths and minimize its weaknesses. It is also the duty of the chaplain to interpret a patient's belief system and its impact upon the care plan to other members of the interdisciplinary team.
Concluding Thoughts
Perhaps the chaplain needs to always remind himself/herself that the finest act that can be done is not serving the patient but in truly seeing the patient's inner goodness and beauty. That helps the patient to claim that beauty and goodness for themselves. This provides for them strength with the intensification of the awareness of mortality and finitude. Herbert Anderson writes that in order to cope with that, the patient needs to do better what all of us should do well: to wait actively, to remember gratefully, to hope realistically, and to trust courageously. These four values represent a positive use of spirituality from diagnosis of life threatening illness to the time where there is no reasonable hope of recovery and finally to the point of death (Anderson, 1989, p. 142-148).
The suffering of those who are dying changes the chaplain and other members of the interdisciplinary team. Memories are developed of those people. Reflecting upon those fighting life threatening diseases and their suffering, chaplains learn more about their own suffering. They are challenged to reformulate their own story. The chaplain also extends pastoral care to other members of the team as they journey in grief for their patients.
It is both rewarding and humbling for a chaplain to hear a patient pray, "Thank you, God, for sending this chaplain into my life." It is no wonder that chaplains find themselves in agreement with Mary T. O'Neill when she writes, "It is an awesome and holy mission to accompany another with care and compassion at the end of his or her life. That we should stand by, wait and pray with the dying and their grief-stricken family members, that we should be among the last to give him or her a drink, or a gentle stroke of the hand or head! This is holy ground indeed, and blessed are we when we take off our shoes and stand with them" (Burton and Handzo, 1992, p. 108-109).
References
Burton, L.A. and Handzo, G., eds. (1992). Health care chaplaincy in oncology. Binghamton, NY: Haworth Press.
Anderson, H. (1989, Summer). "After the diagnosis: An operational theology for the terminally ill," The journal of pastoral care, Vol. XLIII, No.2.
Heckel, F. (July 1994). Lecture notes at Chaplains' School, Hampton VAMC, Hampton, VA.
Platt, L. A. and Branch, R.G. (1988). Resources for ministry in death and dying. Nashville: Broadman.
John Preston Lewis is Staff Chaplain at the Central Arkansas Veterans Healthcare System in Little Rock, Arkansas, and State Chair, Association of Professional Chaplains. He is also an accomplished artist whose work is found in more than 23 states and two other countries. He lives in Benton, Arkansas, with his wife, Diana, and son, Caleb.
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