The crisis of terminal illness

No pastoral experience is more rewarding than an honest, intimate relationship with a person facing the end of life.

Penny Shell is chaplain of the Shady Grove Adventist Hospital, Rockville, Maryland.

Pastor Jon," Sheri began, "I'm calling from the hospital. Devin has just been diagnosed with leukemia. His doctor wants to begin chemotherapy, so he may be here a while. I didn't tell Devin I was going to call you, but I thought you should know. I'm not sure you should visit. I don't want to scare him. I..."

Jon interrupted Sheri to say he would be right there. Devin was not only his parishioner but his friend. Both were in their forties, and both had teenage children. Accustomed to being a calm pastoral authority, Jon was surprised at his own jumble of feelings. He actually felt a little light-headed as he sat down forcing himself to concentrate.

Sitting there, Jon noticed a growing sense of pride that he, not the senior pastor, had been called. Yes, it felt good that Sheri and Devin counted on him to take care of things. He started for the door. He would assure them that Devin would be all right. He would take his Bible and use it to build their faith . . . But would his approach be helpful? What do you say to someone who has just been told that he has leukemia?

The shock

A diagnosis of terminal illness almost always shocks us. We feel as though we are riding on a fast-moving train that suddenly slams into thickly drifted snow hidden in the fog. The impact is devastating for those most affected, but it creates disorientation and stress for pastors as well.

A burst of adrenaline might carry us through our initial contact with the family, but as the days, weeks, and months go by, we need support, skill, and spiritual strength to continue to pastor with strength, sensitivity, and care.

How, then, can we be prepared to minister to the terminally ill?

Personal preparation

Giving attention to our own lives may seem a strange way to begin, but the quality of our ministry is in direct proportion to our responsible self-care. You may find it helpful to write out your personal answer to each of the following six questions.

i! What do I know about working with the terminally ill? Both theory and practice are necessary to help us learn. A good place to begin is taking classes in crisis intervention and death and dying. One of the most helpful ways for pastors to learn to minister in crisis is to take a unit of clinical pastoral education.1

  • How do I view severe illness? If we or anyone in our families have experienced serious or life-threatening illness, we can analyze how the illness affected the ailing person and our relationship with them. If we have not been a firsthand witness to the devastations of illness, we may be surprised at the profound changes illness can produce.

Unlike the tidy illnesses of television stories, people in real life may lose their hair, become skeletal, undergo a personality change, and acquire unpleasant odors. The devout church elder may use the lewd language of his youth after a stroke causes senility to set in. The "mother in Israel" may become a bald, anorexic, waxen doll. The strong, faithfilled young man may become a doubting, weeping complainer. In such circumstances we are called to be God's visionaries who can still see the precious child of God, now assaulted by life's crippling blows.

Another view that we may hold unconsciously is that severe illness represents God's displeasure. The word "stroke," for example, carries the implication that God has struck or is punishing the person. A few decades ago cancer was an almost unspeakable disease because of its association with God's condemnation. Even today, as in biblical times, certain illnesses are considered to be a mark of divine retribution.

  • What are my emotional reactions? Another person's health crisis often makes us think about our own health and eventual death. The closer the person is to our racial, gender, economic, and age category—or the more the person reminds us of some one with whom we have an intimate relationship (positive or negative)—the greater their situation impacts us emotionally. Acknowledging our feelings and expressing them appropriately frees us to support our parishioners.
  • What are my limits? While not "counting the cost" is often seen as noble, it may leave other parts of our lives neglected. Jesus Himself encouraged us to count the cost of our commitments. Counting the cost does not prevent us from acting, but recognizes our limits and helps us decide what action to take.

Perhaps we are in the middle of a major church program when the crisis occurs. Maybe we are in a personal crisis of our own. If so, we can ask for help. Others with more time and energy than we have may be better able to minister in this crisis.

  • What support do I have ? Taking care of ourselves so that we can better care for others is inherent in the biblical injunction "love your neighbor as yourself." We find many reasons to neglect our own needs. In view of the ill person's great need, we may be tempted to think that our needs don't matter. Some of us may feel buoyed up by the thought that we are the "only ones who can really help." Then we hug the situation to ourselves, not wanting to share it. Or we may fail to seek help because, like Elijah's servant, we can't see any support available to us. Yet, finding personal sustenance strengthens our ministry in the same way that putting on our oxygen mask first makes us ready to help others when the airplane pressure drops.

Moses succeeded in blessing Israel during their crisis be cause he accepted the support of Aaron and Hur (Ex. 17:8-16). We too need to ask "Who can hold up my hands?" Colleagues? Family members? Friends or counselors? Our request to them can be as simple as "During this crisis could we get together every Thursday for lunch so I can talk about it?" Or "Would you call me at 9:00 p.m. each Monday to see how I am doing?" Regular meetings with a peer group provide a ready-made place to vent our feelings, share our difficulties, exchange ideas, and gain perspective.

Then there is the ever-present support from God. We can renew that holy presence in a few moments of stillness be fore we enter house or hospital. We can breathe in assurance and breathe out our desire for wisdom.

  • How can my church enter into this ministry? Our congregations can become valuable partners in our ministry in several ways: (1) Church members who show special skills in relating to others can become competent ministers to the ill and dying. An effective training plan is the Stephen Minis try program. Stephen Ministries are a great blessing to many churches, and most Stephen ministers themselves feel blessed by engaging in this ministry. (2) A knowledgeable person or a small committee in your congregation may enjoy creating and updating a church resource book listing local support groups, crisis hot lines, and counselors for use in crises, including terminal illness. (3) Others may form networks such as prayer chains, food preparation teams, and transportation groups so that support can be quickly rallied as it is needed.

Guidelines for interaction

Personal preparation and support can improve our readiness to minister to those in crisis. But how do we put this into practice? The following principles have blessed my ministry to the terminally ill.

1. Be alert and sensitive. When visiting a person whose well-being depends on medical equipment, we can avoid problems by becoming aware of their territory. Sitting on the person's bed may be a good idea, but check with the person first. A recent "accident" may have soiled part of the bed. Careless movements may pull apart IV lines or oxygen tubes or other equipment under the covers. An accidental bump could injure a tender body area.

How long should we stay? Occasionally a long visit is extremely important to the person we visit, but generally long visits tire the seriously ill. High-quality, short visits are usu ally best. We can create a quality visit by removing our wraps and sitting at eye level. After briefly sharing news of the church or expressing our concern, we can become alert to what they want to share.

2. Recognize life. When we accept that we are all dying, we can be more aware that "terminal" people are living. They are still interested in sports and politics, family and religion. The point is to relate to the terminally ill in the same respectful way we always have and not treat them as if they are some one who is already gone.

3. Empower others. We are sometimes called to visit the ill because we are authority figures, but we will serve the dying best as servant leaders. Because very ill people lose so much control over their lives, they easily become mired in a sense of helplessness. As servant leaders we increase their own personal authority by listening to their ideas of how to meet their needs. In a way, we exchange places. We become a "congregation of one" to our parishioners, listening intently while they find ways to be strengthened.

Pontificating grabs power away from others: "You should take Tom to our healing service." "You must be anointed." "Read Psalm 91 every day." Or "Deal with your denial." It is much more effective to elicit responses in others. This creates power in them: "Tell me how you see the situation." "What helps you the most?"

4. Connect with family.2 The ill don't suffer alone; their whole family is affected. As we spend time with the family of someone who is dying, we begin to see how each member relates to the others. Discover the ones who seem to be the family spokespersons, the main decision-makers. They can be a valuable source of information and connection with the whole family.

Some family members may appear helpless, have trouble expressing their feelings, or get pushed to the side. We can support these less-visible members by listening to them and acknowledging their pain and efforts. Children are often in the latter group. We can encourage adults to trust children to choose their own degree of involvement and not to "protect" them automatically.

When a person is terminally ill, the family often begins grieving long before death comes. We can facilitate this process by accepting their pain. If the husband says to us, "I don't think she is going to make it, Pastor," it doesn't help to say "Oh, come now, you need to have faith." Consolation comes when we acknowledge the feelings expressed: "That must be very frightening."

We can also help family members cope by asking them what other crises they have faced and what they did to cope then. Just remembering how they have coped before reengages gears of action and coping in the present. Since family members literally forget to care for themselves at times, we can encourage their ideas for their own support, such as planning a day out.

5. Communicate honestly and directly. What should we do if the family tells us that "Grandma doesn't know she has cancer, and we aren't telling her"? A possible response is to let the family know that while we will not announce Grand ma's diagnosis to her, we cannot tell her a made-up story if she asks a direct question.

Should a pastor talk about dying? It can be hard—that's why Jon planned to assure Devin that he would be all right. True, we don't need to bring up dying. But if the sick person expresses fears of dying, our listening can provide comfort and relief.

Should the pastor cry? To be happy always makes a contribution, but it may also short-circuit sadness that is natural and appropriate. Tears can bless. Excessive tears, on the other hand, can be a burden if we have become so emotional that others feel they must take care of us. We may avoid too many tears by doing our own grief work with peers and counselors.

What about talking to unconscious people? When the ill are nonresponsive, we may find ourselves talking to others about them in their presence. We need to remember that an ill person may hear us even when they can't respond, so it is best to continue talking directly to them. Explain to the family, "I know Al doesn't respond to us at this time, but I am uncomfortable just talking about him. Excuse me while I talk with him a moment." Then say to Al, "Al, I know that you are very weak right now and that you cannot talk with me, but be patient while I do all the talking. Renee tells me you had been planning a retirement vacation when you were diagnosed. That must be a real disappointment. She said Al, Jr., is coming to town to visit with the two of you this weekend. I would imagine it is hard for you to have Al, Jr., see you so still, but it will be good for him to be with his dad, no matter what the circumstances. Renee has asked me to pray for you. I wish you were able to let me know just what was most on your heart, but God knows what you feel and what you need, and even if I get it all wrong, God will get it all right."

6. Deal with emotions. When we listen to expressions of emotion, we help the dying "take out the trash" before they die. Our nonjudgmental listening can help the ill express emotions such as anger, doubt, fear, sadness, or guilt. Unacknowledged or denied emotions bury themselves; they do not go away.

Feelings of guilt deserve special care. If we have a relationship of trust with the ill, we are often the ones with whom they share this guilt. Not all guilt is logical, but all guilt can be respected. Through patient, nonjudgmental listening we can offer the reassurance of God's forgiveness and grace. Guilt is a persistent visitor. Though banished one day, it may reap pear the next.

7. Bring religious resources gently. The way we use Scripture and prayer can honor or trample a person's needs. We don't need to force a text into the conversation by saying "What you really need to read is..." Rather, ask "Would you like me to read a scripture while I am here?" Then we can respect any negative or unclear answers ("Well, if you want to") by saying "That's OK. Let me know when you want to hear Scripture." When, as most people do, they say yes, we can offer, "Do you have a favorite scripture you would like to hear?" If not, we can be ready to share a scripture that has blessed us in hard times.

Prayer also can be more effective when offered and not imposed. Sometimes the best prayer is the one we pray before we visit. The effective prayer that avails much is one that grows naturally out of the conversation, the one that reflects the concerns and even the words of the dying person.

Like Scripture, prayer is more welcome when it comes with permission: "Would you like me to pray for you?" Respect unenthusiastic answers, such as "Well, I guess you can," with "That's OK; we can pray another time." Most people, however, do welcome our prayers. When they do, one of the most meaningful things we can ask is "What would you like me to pray for?" Often people think quietly and deeply about this question. Then, sometimes with tears, come the heartfelt requests: "Pray that the kids will be OK after I am gone." "Pray for my healing." "Pray that I will not linger on and on." "Pray that my coworkers will open their hearts to the Lord." "Pray that we can find a way to pay for all of these medical expenses." And when their cry is reflected in our prayer, showing how carefully we have heard them, they are reassured God hears them as well.

Additional religious resources we may offer include anointing, communion, and other concrete symbols of personal spiritual meaning.

8. Hang on to God's bottom line. Sometimes merely sitting quietly with the ill person and the family is our best ministry. Implementing "correct methods of visitation" can not substitute for a genuine caring presence. Just being there, or being with, is often simply all that is needed. That is the bottom line of our ministry to the terminally ill: to live out God's promises "I will never leave you nor for sake you"; "Do not fear, for I am with you" (Joshua 1:5, NIV;Isa. 41:10, NIV).

Worth the price

If we rush to the dying as heroes, to receive appreciation and praise, we may fall on our faces. But when we have made the proper arrangements to care for ourselves and to enter with sensitivity, wisdom, and commitment into the lives of those diagnosed with a terminal illness, we open ourselves for an effective ministry. Probably no experience is more re warding than an honest, intimate relationship with a person facing the end of life.

1. Clinical pastoral education is training for crisis ministry in which a supervisor and peers give support and feedback during actual ministry in a crisis setting. For more information about a program near you. call Association of Clinical Pastoral Education, Inc. (404-320-1472). Adventist health systems or hospitals currently offering clinical pastoral education include Adventist HealthCare Mid-Atlantic, located at Shady Grove Adventist Hospital (301-279-6438); Florida Hospital, Orlando, Florida (404-897-1553); Kettering Medical Center, Dayton, Ohio (513-298-4331, ext. 5000); and Loma Linda Medical Center, Loma Linda, California (909-824-4367).

2. Family here refers to those who are seen as intimate and meaningful, whether or not they are related by blood ties or marital bonds.

Ministry reserves the right to approve, disapprove, and delete comments at our discretion and will not be able to respond to inquiries about these comments. Please ensure that your words are respectful, courteous, and relevant.

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Penny Shell is chaplain of the Shady Grove Adventist Hospital, Rockville, Maryland.

June 1996

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