terminal issues clinical pastoral educationcurriculum

Terminal Issues

Clinical Pastoral Education Curriculum

UUnniitt OOnnee

This clinical pastoral education unit was written by several HCMA Chaplains and

edited by Jeffrey R. Funk, HCMA Executive Director. It is for the exclusive use of

HCMA Chaplains and Trainees. It is not to be altered in any way—no edits of

form or content. Permission for any other use must be obtained in writing from:

Healthcare Chaplains Ministry Association 101 S Kraemer Blvd, Suite 123A Placentia, California 92870-5094

Phone: (714) 572-3626 | Fax: (714) 572-0585 E-mail: [email protected] | Website: www.hcmachaplains.org

Copyright © 2016, HCMA. All rights reserved.

mailto:[email protected]

http://www.hcmachaplains.org/

HCMA Clinical Pastoral Education Curriculum Unit One, Chapter 6

2 Copyright © 2016, HCMA

Unit One Overview

Introduction Introduction to the HCMA Chaplaincy Training Program

A Word to the Trainee

Training Curriculum Overview

Educational Goals and Objectives: Unit One

Chaplain-Trainee Learning Goals

Daily Chaplaincy Training Activities Record

Verbatim Reports HCMA Policy Manual

Chapter 1 Biblical Foundation for Pastoral Care: Love and Compassion

Chapter 2 Spiritual Formation

Chapter 3 Hospital Visitation: Dos and Don’ts

Chapter 4 Active Listening

Chapter 5 Ministering to Patients/Residents

Chapter 6 Terminal Issues

Chapter 7 Death, Loss and Grief

Chapter 8 Handling Emergencies as a Chaplain

Evaluations Chaplaincy Training Evaluation and Trainee Evaluation

Supplement Developing Ministry Partners


Terminal Issues

Clinical Pastoral Education Curriculum

Unit One — Chapter 6

TTeerrmmiinnaall IIssssuueess

This clinical pastoral education curriculum was written by several HCMA

Chaplains and edited by Jeffrey R. Funk, HCMA Executive Director.

It is for the exclusive use of HCMA Chaplains and Trainees.

It is not to be altered in any way—no edits of form or content. Permission for any other use must be obtained in writing from the:

Healthcare Chaplains Ministry Association 101 S Kraemer Blvd, Suite 123A Placentia, California 92870-5094

Phone: (714) 572-3626 | Fax: (714) 572-0585 E-mail: [email protected] | Website: www.hcmachaplains.org

mailto:[email protected]

http://www.hcmachaplains.org/



Unit One — Chapter 6 Terminal Issues

Table of Contents

Pre-Death Grief Response… ......................................................................................... 7

A Season of Denial… ......................................................................................... 7

A Season of Anger… .......................................................................................... 8

A Season of Bargaining… ................................................................................ 10

A Season of Depression… ................................................................................ 10

A Season of Acceptance… ............................................................................... 11

Phases of Dying… ............................................................................................ 12

Tasks Involved in Coping with Dying… .......................................................... 12

Communicating with the Seriously Ill… .................................................................... 13

Factors Blocking Good Communication…....................................................... 14

Needed for Good Communication… ................................................................ 14

Suggestions for Being Physically Present… ..................................................... 14

Being with Family of a Dying Person… ..................................................................... 15

Factors that Affect a Family’s Reactions… ...................................................... 15

Patterns of Family Interaction… ....................................................................... 15

Emotional Reactions of Family Members ........................................................ 16

Opposing Tasks of Family Members… ............................................................ 16

Responding to the Seriously Ill… ............................................................................... 17

Listen… ............................................................................................................ 17

Look… .............................................................................................................. 17

Affirm ............................................................................................................... 17

Emote… ............................................................................................................ 18

Touch… ............................................................................................................ 18

Replenish… ...................................................................................................... 18

Tips to Remember when Visiting the Seriously Ill… ................................................ 18

Appendix Reading… .................................................................................................... 18

Chapter Assignments… ............................................................................................... 19


Terminal Issues

Chapter Resources… ................................................................................................... 20

Appendix A: The Dying Person’s Bill of Rights… .................................................... 28

Appendix B: 10 Commandments for Helping the Seriously Ill… ........................... 29

Appendix C: Dos and Don’ts when Dealing with a Dying Person’s: Stages”… ..... 31

Appendix D: Emotional Experiences of the Dying…................................................ 34

Appendix E: Spiritual Morphine: The Delusionary Hope of Dying on Your

Own Terms… ............................................................................................................... 36



Terminal Issues

Somebody should tell us, right at the start of our lives, that we are dying.

Then we might live life to the limit, every minute of every day. Do it! I say. Whatever you want to do, do it now!

There are only so many tomorrows.

— Pope Paul VI (1897-1978)

My heart is in anguish within me, And the terrors of death have fallen upon me.

— David (Psalm 55:4, NASB)

When this happens—when our perishable earthly bodies have been transformed into heavenly bodies that will never die—

then at last the Scriptures will come true: “Death is swallowed up in victory.

O death, where is your victory? O death, where is your sting?”

— Apostle Paul (1 Corinthians 15:54‐55, NLT)

ost people will choose to handle death in the same manner they choose to handle life. This is

what Dr. Jim Towns, who teaches classes and lectures on the subject of death and dying, means M


Terminal Issues

when he says, “According to a person’s philosophical or theological perspective, he will develop a style

of living and dying. A person’s style of dying is inherent in his style of living. A person’s attitude about

illness, dying and death depend on his systems of beliefs.”1

Pre-Death Grief Response2

To effectively minister to the terminally ill person, it is helpful to understand the emotional process

s/he might experience. When a person knows s/he is going to die, that individual usually experiences five

different “stages” or seasons of emotional response.3 We will also find that his/her loved ones often go

through these same emotional reactions. However, we must keep in mind the fact that each person

approaches death in a unique and individual manner. These “stages” or phases are not always in a specific

order or experienced by every person every time. Few dying patients/residents go through these stages as

if they were climbing a ladder one rung at a time. Nevertheless, they do offer a general framework of

which we should be aware when dealing with the seriously ill.

A Season of Denial

What to expect

The first reaction is usually an intellectual refusal to accept or believe the prognosis of his/her

condition. Some people make such statements as, “It can’t be! They’re wrong! There must be a mistake

of some kind.”

There are many forms of denial. This person may go from doctor to doctor seeking another diagnosis

and prognosis while searching for some ray of hope. The patient or resident may deny that s/he is ill at all,

that the diagnosis is correct, that the diagnosis is fatal, that the diagnosis bothers him/her in any way, or

that the diagnosis will change his/her lifestyle in any way. The person with a fatal illness may show

his/her denial in ways other than words. S/he may make unrealistic plans, look forward to events far

beyond his/her life expectancy, disobey doctor’s orders, refuse to accept limitations, and/or make over-

optimistic statements about the therapy.

It is also important to realize and respect the fact that a patient’s or resident’s state of denial can

fluctuate from day to day. The reason one’s denial may fluctuate is probably dictated by the degree of

stress s/he is under at any given time. The amount of denial a person expresses is usually that which is

required to get along comfortably. That is because denial is essentially that mechanism by which a person

is enabled to put out of mind the morbid, upsetting, frightening, depressing, and pessimistic aspects of

his/her life while focusing on more constructive issues like the business of living.

Denial has been called the “emotional shock-absorber” to tragedy. Therefore, it is not necessarily

unhealthy to experience it. It is needed as an emotional buffer or safety zone. Through denial a person’s

emotions are temporarily desensitized. It allows time for a terrifying idea to “sink in” so people can

“collect” themselves. Denial freezes a person’s emotions for a certain amount of time before reality must

be faced, but those emotions must be thawed out eventually.

Denial becomes harmful and pathological when it blocks out and prevents the grieving process

altogether. Jeremiah 6:14 explains that we cannot heal a wound by saying that it is not there. If a person’s

denial is so distorted that a communication barrier has come between the person and the family, and s/he

1 Jim Towns, A Family Guide to Death and Dying (Wheaton, IL: Tyndale House Publishers, 1987): 133.

2 Much of this information is adapted from Ministering to the Dying, by Carl J. Scherzer (Prentice-Hall, 1963): 369-

376; and from a booklet written by Jeffrey Funk, As Someone Dies—What to Expect? (FHRMC, 1994).

3 This five-stage grief reaction is outlined in detail by Elisabeth KÜbler-Ross in her classic book: On Death and Dying

(New York, NY: Macmillan, 1970).



is becoming more and more isolated from them, then it is time to gently break through the denial so that

some meaningful sharing can take place. If the person’s relationships are good, and s/he is not doing

anything self-destructive, then the denial really is not all that “bad.” Denial should be honored as long as

it is adaptive.

With regard to the value of denial, Joyce Landorf has said:

We need denial—but we must not linger in it. We must recognize it as one of God’s most unique tools

and use it. Denial is our special oxygen mask to use when the breath-taking news of death has sucked

every ounce of air out of us. It facilitates our bursting lungs by giving them their first gulps of sorrow-

free air. We breathe in the breath of denial and it seems to maintain life. We do not need to feel guilty or

judge our level of Christianity for clutching the mask to our mouth. However, after breathing has been

restored and the initial danger has passed, we need not be dependent on it.

I think God longs for us to lay down the oxygen mask of denial, and with His help begin breathing

into our lungs the fresh, free air of acceptance on our own.4

Ways to Respond

Remember: This stage of skepticism may be necessary to give the patient/resident and his/her family

the opportunity to gather the personal resources that will allow them to face the ultimate outcome of this

serious illness—death.

We need to be tactful—gentle, yet firm. We must never contribute to the patient’s/resident’s fantasy

by giving false hope, or upset him/her by emphatically insisting that s/he is wrong. We must always be

empathetic and understanding.

Do not judge the person for what is being said at this time. A simple, honest statement might be

helpful, such as, “Yes, you have terminal cancer and I’m very sorry. I know it must be very hard for you

to accept.” Eventually the person will respond because s/he needs someone with whom to share his/her

loss and loneliness.

Simply being with the person and the family is an important ministry. Never underestimate the power

of our pastoral presence.

Touch (such as holding a hand) is also vital because it expresses a common bond and sharing of

existence. It is surely one of the most important forms of nonverbal communication with a dying person

and is usually not done enough.

Here are some Bible verses we may want to share during this season of denial, as long as it is

appropriate to do so: Psalm 4; 16; 18:1-6; 23; 30; 31; 40; Romans 8; 2 Corinthians 1:3-11; Hebrews 4:14-

16. What do you think about these verses? What are Scripture do you think would be helpful to someone

going through denial?

A Season of Anger

What to Expect

Realizing, at least in part, that s/he will die, the terminal patient or resident may openly express anger,

rage, envy and/or resentment. Instead of responding with “No, not me,” the person now responds with,

“Yes, but why me?” The patient/resident may:

Be angry with friends and relatives who are well.

Complain about the medical care or gripe about the food.

4 Joyce Landorf Heatherley, Mourning Song, Revised and expanded ed. (Grand Rapids, MI: F. H. Revell, 1994): 53.


Terminal Issues

Be angry with the doctor who cannot make him/her well.

Be angry with God for allowing this to happen and for not immediately providing healing.

Say something like, “I didn’t do anything to deserve this. It’s not fair!”

In Job 7:11 it says, “Therefore I will not restrain my mouth; I will speak in the anguish of my spirit; I

will complain in the bitterness of my soul.” Some other examples of anger in the Bible can be found in 1

Samuel 20:30-33; Jonah 4:1; and Luke 15:28.

Ways to respond

We should not take such anger personally. They are not angry at us, but at their situation. Nor should

we become judgmental and say that the person should not feel so angry. This is simply part of the normal

process most people experience, and it usually helps them relieve the anguish of dying by being able to

express it.

Active listening is very helpful in dealing with the angry patient/resident. Allow the person to

verbalize the reasons for his/her anger and to vent specifically how s/he feels. The person could be merely

demanding attention. Honest and open communication can help him/her feel understood as we affirm

what s/he is feeling.

When dealing with a person in this stage of reaction, try to be brief and direct, avoiding anything that

sounds like preaching. The person who is perceived as helpful during this time is the one who cares

enough to listen and understand the other person.

Some Scripture that may be shared (with permission) during this stage are: Psalm 4:1-4; 6:1-5; 22;

31; Proverbs 15:1; Ecclesiastes 1:1-4; Matthew 5:21-22; Mark 14:32-42; Ephesians 4:26, 31; James 1:19-

20. What do you think about these verses? What are other verses do you think might be helpful to share

with an angry person?

A Season of Bargaining

What to Expect

Realizing s/he is in fact dying, the person may attempt to postpone death by offering good behavior or

service as an exchange for a longer life. The patient or resident now pleads, “Yes, I know I’m dying, but

spare me!”

This stage usually lasts only a brief period of time, but it can be intense while it lasts. The bargain

usually involves a specific promise: “If I can get well then I will serve the Lord more than ever,” or “I’ll

be satisfied if only I can live to see my grandchildren,” and the list of bargains goes on and on. These

bargains are usually made in secret and often with God. Keep in mind that family members can bargain

just as much as the terminally ill patient or resident.

Part of the bargaining process could reflect their reaction to death and to God. They may feel that God

simply does not know what He’s doing and they need to straighten Him out. Others could be allowed to

die, they reason, but in this case He’s wrong. In response to such questions, Joe Bayly made this comment

in his book, The View from a Hearse: “Death for the Christian should be a shout of triumph, through

sorrow and tears, bringing glory to God—not a confused misunderstanding of the will of God to heal.”5

Joyce Landorf shares this story of a lady and her experience with bargaining:

She had lost her first husband after thirty years of marriage. Two years later she had married again

and had seven happy years with a second husband. Then he got cancer.

5 Joseph Bayly, The View from a Hearse, Revised and expanded ed. (Elgin, IL: David C. Cook, 1973).



She told me they had been so very happy and the seven years had been so short that she pleaded and

bargained with God to heal her husband. He was very close to dying and she knelt by his bed and begged

the Lord to heal him so he wouldn’t die. She said the Lord’s voice spoke so clearly that she was quite

startled by it. She heard Him say very distinctly in her mind, ‘Your husband has prepared himself to

accept death and to die right now. Tell Me, do you want him to prepare himself for death again—later

on?’ She opened her eyes and looked at her husband—he was at peace—he had reached acceptance. She

said, ̀ Oh, Joyce, I knew right then I’d have to release him. At that moment a great peace settled over me.

He died a few hours later. Both of us were at peace.’ If she had hung on, begged God to let her husband

live, she would have missed what God wanted to do in their lives.6

Ways to Respond

We might review with them the story of the fiery furnace and point out the conditional clause in the

statement of deliverance of the men involved (see Daniel 3:18). Another option is to look at 1 Peter 1, a

chapter that deals with hope in the face of extreme difficulty. See also Psalm 39:13; 2 Kings 20:1; and

Isaiah 18 for additional examples of bargaining. What do you think about these verses? What other

Scripture verses might be helpful at this time?

How should we pray for a patient/resident who is bargaining? Should we pray for complete healing?

Perhaps our prayer ought to be for more pain-free moments for the person, for his/her complete

knowledge of God’s purpose and will, for the person’s relationship to Christ to become stronger, and/or

for a positive witness with the doctors, nurses, friends and relatives. Even so, it is not wrong to call upon

the Lord of grace for healing (wholeness, wellness).

Our ministry at this time is to be a listener. We need to respect the need to bargain, realizing that it is

actually a part of hope. False reassurances will not be helpful. Simple reflection, a meaningful touch, and

empathic listening will minister to the person struggling with the reality of facing death. Try to show

them the implications of their bargaining, but do so in a loving, constructive manner. Please, no lectures

or pious platitudes.

A Season of Depression

What to Expect

Denial has not worked. Anger has not worked. Bargaining has not worked. Therefore, the individual

facing death concludes that nothing works—and now depression tends to set in. Aware that s/he will lose

all those whom s/he loves, thinking of the many things s/he will never live to see or do, and anticipating

his/her steady deterioration, the terminal person may now become downhearted and withdrawn: brooding,

feeling sad, and being inconsolable. The dying patient/resident now responds by saying, “Yes, it’s me.

What’s the use? I’ll never feel good again. I’m going to die!” Such feelings of despair are a normal part of

preparing to die.

This depression has two parts:

1. One is called reactive depression. The person thinks about past memories (mourning for what is

already lost: health, independence, mobility, uncompleted work, and an inability to meet responsibilities).

Reactive depression often occurs in response to feelings of helplessness, loss of control, and lowered self-

esteem associated with serious illness. This depression may also be associated with feelings of

abandonment by family members and others, actual or imagined insensitivities of medical staff, and such

real world issues as finances.

2. The second is called preparatory depression. The person thinks about impending losses that s/he

has held dear (mourning for what is still to be lost: family, friends, and all that might have been).

6 Mourning Song, 83‐84.


Terminal Issues

Preparatory depression may be evidenced by frightening dreams, irritability, sadness, anorexia, apathy,

and, on occasion, suicidal preoccupations. This depression represents the dying patient/resident’s

mourning for self, personal relationships, and physical potency.

Ways to Respond

This is a time when the person needs to express sorrow and to pour it out. We can minister best at this

time by sitting silently with the person or holding a hand and letting him/her know that it is okay to

express feelings of loss. Please do not argue or debate with him/her, for the consequences of doing this

can only be negative.

The dying person may also be feeling unnecessary guilt and shame for causing sadness to family and

friends, or for being a “burden” to them. Allow the person to grieve, but also help him/her to relieve any

guilt.

It can be helpful to focus attention on the concrete and real-life situations causing the patient/resident

difficulty, and to mobilize available support. Help facilitate communication with his/her family. If

possible, help ease financial burdens (by making a referral to the social worker). Help him/her adjust to

body-image changes.

It is not helpful to interrupt the patient/resident’s preparatory responses with false promises. It is

important not to rush the patient/resident through this season of depression, but to help him/her gain a

sense of closure through the process.

Although we cannot offer false hope at this juncture, the following Bible verses might be an

encouragement: Psalm 22:1-24; 23; 31; 32; 37; 38; 42; 43:5; 51; 60; 62; 63; 142; Matthew 11:28; John

14:16-18; 16:20-22; 1 Corinthians 15; 2 Corinthians 4:8-9; Philippians 4:13. What do you think about

these verses? What are other verses that you think might be helpful to someone who is downhearted?

In using God’s Word, we should emphasize the faithfulness and love which God has for His children,

rather than stressing what God is trying to teach him/her through this experience (even though lessons are

also important). Biblical examples of depression are found in the life of Elijah (1 Kings 19:4), David (2

Samuel 12:16-24), Job (Job 1:1; 19:25-26), and the sons of Korah (Psalm 42—43).

A Season of Acceptance

What to Expect

Acceptance is the final stage in the emotional process of dying. Having faced and struggled with the

reality of death, the person now rests in the knowledge of what will happen. This is not necessarily a

happy time for the person, but it is a time of emotional calm—no great fear, joy or sadness—often marked

by increasing withdrawal and long periods of sleep. The dying person has given consent to death, saying,

“Yes, I’m ready now.” It is a healthy coming to terms with reality and allowing the world to go on

without him/her. There is nothing else to do but to accept the inevitable.

Does anyone ever really accept death? For many a seriously ill person, death is a welcome visitor,

especially where pain or prolonged suffering cause a person to view death as a desirable release from that

suffering. Though many do make themselves ready, there are always some who seem to be caught

unprepared.

Ways to Respond

The adage, “We bring to our dying the resources of our living” seems most often to be accurate. We

need to respect the individual’s right to complete his/her life in ways that are meaningful to him/her

(which may not be so acceptable to us). Not everyone reaches the kind of acceptance about impending

death that we hope they will. Knowing this can help us minimize unrealistic expectations.



The person who has come to accept his/her impending death may lose all interest in life at this point

and even become less talkative. At this stage in the process of dying, the Chaplain’s attention often turns

towards an even greater involvement with the family. Family members often ask, “What do I say to my

loved one?” The greatest words of solace are: “I love you—regardless and always.” Tell the family

members to let the dying person know what s/he has meant to them. Have them be specific.

Phases of Dying

Dr. Pattison7 divided the seasons, or phases, into the following three categories:

1. Acute Phase. This initial phase involves the denial, anger and bargaining already discussed.

2. Chronic Living/Dying Phase. This phase is focused on fears: the fear of abandonment, loss of

self-control, suffering and pain, loss of personal identity, the unknown, and the fear of regression into

self.

3. Terminal Phase. This phase is concerned mostly with withdrawal issues.

Tasks Involved in Coping with Dying

Using the above three phases as a guideline, there are several tasks involved in dealing with a life-

threatening illness (see Figure 1 below).8 Looking at each one, reflect on ways that we, as the healthcare

Chaplain, might minister to someone facing each of these tasks.

Tasks Involved in Coping with Dying

General Task Acute Phase Chronic Phase Terminal Phase

1. Responding to the

physical fact of disease

1. Understanding the

disease

1. Managing symptoms

and side effects

1. Dealing with

symptoms, discomfort,

pain and incapacitation

2. Taking steps to cope

with the reality of

disease (perceive self-

confidence)

2. Maximizing health

and lifestyle

3. Maximizing coping

strengths and limiting

weaknesses

4. Developing

strategies to deal with

the issues created by

the disease

2. Carrying out heath

regimens

3. Preventing and

managing health crises

4. Managing stress and

examining coping

5. Maximizing social

support and minimizing

isolation

2. managing health

procedures and

institutional stress

3. managing stress and

examining coping

4. Dealing effectively

with caregivers

5. Preparing for death

and saying goodbye

6. Normalizing life in

the face of the disease

7. Dealing with

financial concerns

7 E. Mansell Pattison, Experience of Dying (Upper Saddle River, NJ: Prentice Hall, 1977). Dr. Pattison was the

Deputy Director of Training, Consultation and Education Division of the Orange County Department of Mental

Health, and was the Chairman of the Department of Psychiatry at the University of California, Irvine.

8 See Kenneth J. Doka, Counseling Individuals with Life-Threatening Illness (New York: Springer, 2008).


Terminal Issues

General Task Acute Phase Chronic Phase Terminal Phase

3. Preserving self-

concept and

relationships with

others in the face of the

disease

5. Exploring the effect

of the diagnosis on a

sense of self and others

8. Preserving self

concept

9. Redefining

relationships with

others throughout the

course of the disease

6. Preserving self

concept

7. Preserving

appropriate

relationships with

family and friends

4. Dealing with

affective and existential

spiritual issues created

or reactivated by the

disease

6. Venting feelings

(fears, etc.)

7. Incorporating the

present reality of the

diagnosis into one’s

sense of past and future

10. Venting Feelings

(fears, etc.)

11. Finding meaning in

suffering, chronic

illness, uncertainty, and

decline

8. Venting Feelings

(fears, etc.)

9. Finding meaning in

life and death

Figure 1 Tasks Involved in Coping with Dying

The Chaplain needs to have two important objectives that serve as a framework for the chaplaincy

care offered to the seriously ill:

1. First, give the person permission to pass away from every important person s/he will leave behind

when s/he dies. The achievement of this first objective is more a function of the people in the

patient/resident’s environment than of the person himself/herself. Most responsible people will realize the

burden they place on those they leave behind emotionally and financially. Although death may be

inevitable, s/he may still have feelings of guilt for leaving personal duties unfinished, even when it is not

in his/her power to do otherwise. For this reason, the Chaplain needs to strive to help enable all the

important people in the patient’s or resident’s life to grant him/her permission to die. This permission is

given verbally, but it also comes in the form of reconciliation, honesty and giving, which allows the

patient or resident to know that even though s/he will be missed, s/he still has permission to die. This

permission is essential for a dying person.

2. Second, enable the person to voluntarily let go of every person and possession in his/her life. This

second objective is that of enabling the patient/resident to voluntarily let go of all that s/he holds dear in

life. Although Jesus Christ urges people to not hold onto the things of this world (e.g., in Matthew 6), few

(even believers) ever completely achieve that type of life style.

Communicating with the Seriously Ill

Interpersonal communication regarding death and dying has become an increasingly important area in the

field of thanatology, wherein research has addressed the critical role of open communication in facilitating

the positive processing of a death loss. Being able to communicate honestly about the quality or length of

one’s life, the disease process, and one’s feelings about faith, family members or friends is of utmost

importance.

The benefits of open communication are clear. Relationships that allow for communication about

death often precede healthy adjustment. Researchers have found that the emotional impact of being

labeled as “dying” is directly related to the quality and openness of the communication between the dying



individual and others. If open communication is not achieved, then caregivers operate on preconceptions

rather than the dying individual’s actual thoughts and feelings.

Factors Blocking Good Communication

Not wanting to face the reality of the death (e.g., always changing the subject).

Not having the time to become involved (withdrawing from and avoiding the person).

Not feeling emotionally able to handle the intensity of the situation (e.g., a fear about discussing death and dying).

The meaning of the words may not be clear since the terms used may have different meanings for each person.

Non-verbal signals (e.g., closed body language and no eye contact).

Strained relationships that make it hard to be open and honest.

A tendency to judge or to critically evaluate statements that are made.

A lack of trust.

An inability or unwillingness to listen empathically.

Cultural barriers.

Manipulation.

Defensive listening.

Non-accepting tone of voice.

Pre-occupation with self.

Inadequate pain management and/or the effects of medication.

Needed for Good Communication

Appropriate tone of voice.

Active (empathic) listening skills.

Good eye contact.

Sharing of feelings as well as thoughts.

Clarification of meaning.

Verbal prompts to encourage talking.

Suggestions for Being Physically Present

Face them squarely and on same eye level (for good eye contact).

Adopt an open posture (e.g., no crossed arms).

Lean toward them.

Try to be relaxed (smile).

Show facial expression that indicates you are listening.

Nod to encourage talking.


Terminal Issues

Touch (e.g., holding a hand) when appropriate. Dying people sometimes feel “untouchable” so touch

can be a meaningful way to communicate care and comfort.

Being with Family of a Dying Person

Facing a serious illness can be a frightening experience, even for the most stable and secure families.

There’s no right way for a family to react or cope. Each family is unique, and each member of the family

will have his or her own strengths and vulnerabilities. Identifying and building on the family’s strengths is

an important part of understanding the vulnerable areas and building in extra support where it is needed.

Each member will need time to find his/her own way and own comfort level, without pressure to conform

to another’s coping style.

Factors that Affect a Family’s Reactions

There are several factors that can affect a family’s reaction to serious illness:

The Life Stage of the Family. A very young family may not have experienced crises together before.

They may have less confidence in their ability to cope. Families with children will face coping with the

children’s needs and reactions while also trying to keep their own lives as normal and secure as possible.

This may add a lot of stress to their lives. Older families may have experience in handling a crisis, but

they may not have the physical stamina they need to cope.

The Presence of Other Stressors in the Family. Financial problems, martial or behavior problems,

lack of available support from family and friends, and any other problems that existed before the illness

can become even more intense.

The Family Role of the Ill Person. If the patient/resident is the primary wage earner or the “family

executive,” there may be financial changes as well as the need for someone else to take on the leadership

role. If the ill person is the wife or mother, many household responsibilities may have to be reassigned.

The “balance” of the family system changes and they must all adjust.

The Nature of the Illness. Illness that affects a person’s appearance, personality, cognitive ability, or

ability to function fairly normally will involve many emotional reactions, as well as practical changes. If

hospitalization is required, there is more disruption to the family. If the prognosis is uncertain, or the

illness involves a process of remission and recurrence, anxiety is usually increased. Families may need

support as they experience the confusing ebb and flow of hope and fear, of trying to stay close while also

preparing to let go.

Patterns of Family Interaction

There are four patterns of family interaction in response to a life-threatening illness:9

1. Closed Awareness. The dying person does not recognize that death is impending, although other

people may know. In general, closed awareness does not allow for open communication about the illness

or the probability of death.

2. Suspected Awareness. The patient suspects that the prognosis is death, but this has not been

verified by those who know. The dying person may try to confirm or deny his/her suspicions by testing

family members, friends and medical personnel in an effort to illicit information known by others, but not

openly shared. Despite the secrecy, however, the patient is aware that the illness is severely disrupting the

family’s usual style of relating and may sense others’ fearfulness or anxiety about his/her condition, thus

tending to confirm the suspicion in the patient’s mind.

9 Adapted from Barney G. Glaser and Anselm L. Strauss, Awareness of Dying (Edison, NJ: Transaction Pub., 2005).



3. Mutual Pretense. Everyone, including the patient, recognizes the fact that death will be the

outcome, but all act as if the patient will recover. Mutual pretense may be practiced right up to the end.

The pattern of mutual pretense usually begins early. Subtle signals are communicated among family

members that the method used to cope with the crisis is to pretend that things are normal.

4. Open Awareness. The likelihood of death is openly acknowledged and discussed. Such openness

does not necessarily make death easier to accept, but it does offer the possibility of sharing support in

ways that would not otherwise be available.

Emotional Reactions of Family Members

Families may react (at the time of diagnosis or crisis) by drawing close together, but they may find it

difficult to stay close, to be on their “best behavior,” if the illness continues for an extended time. This

may produce feelings of disappointment, guilt, anger, and fear.

Fears can escalate, including fears for the health of other family members or oneself, as well as fears

of death.

It is common for people to convert their feelings of fear and sadness into anger. It is easier to respond

helpfully when the real, underlying feeling is understood.

It is normal to ask, “Why me?” or “Why my family?” Some family members, especially children,

may believe the illness is a punishment from God. Usually, serious illness prompts people to question the

meaning of life as well as their religious beliefs. This is often upsetting and guilt-producing, but it can

lead to an even stronger, more mature, belief system.

Children almost always engage in magical thinking and may believe the illness was caused by

something they did or even something they thought. It’s important to listen to their thoughts and help

them understand that they are not responsible for the illness. They also need to be assured that, as much as

possible, their lives will go on normally.

Many people struggle with feelings of guilt and regret, criticizing themselves for past

misunderstandings with the ill person. They expect themselves to respond to a life and death situation

with constant strength, compassion, patience, and positive thinking. This isn’t possible! Sad feelings are

normal. Anger is normal. Human relationships are never perfect because human beings are never perfect.

Try to help them accept their feelings and to find ways to express them in ways that are acceptable to

them.

When a family understands that it is normal for relationships to change when someone becomes

seriously ill, they will be less apt to misinterpret the changes, or to feel rejected and frightened.

Opposing Tasks of Family Members

The following are some of the opposing tasks that family members will struggle with, according to

Therese Rando, a clinical psychologist, thanatologist and traumatologist:10

Holding on to the patient vs. letting go.

Increasing attachment to the patient during the illness vs. starting to detach from the patient in terms of his/her existence in the future.

Remaining involved with the patient vs. separating from the patient.

Planning for life after the death of the patient vs. not wanting to betray the patient by considering life in his/her absence.

10 Therese A, Rando, ed., Loss and Anticipatory Grief, (Lanham, MD: Lexington, 1986).


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Listen

Communicating feelings to the patient vs. not wanting to make the patient feel guilty for dying or feeling bound to this world when the patient needs to let go.

Balancing support for the patient’s increased dependency vs. supporting the patient’s continued need for autonomy.

Focusing on the past and recollecting with the patient vs. focusing on the future.

Redistributing family roles and responsibilities vs. not wanting to do anything that would call attention to or cause more losses for the patient.

Taking care of the patient’s needs vs. taking care of one’s own needs.

Being immersed in participating in the patient’s care vs. living one’s own life.

Experiencing the full intensity of feelings involved in anticipatory grief vs. trying not to become overwhelmed.

Focusing on the patient as a living person vs. remembering that the patient is dying.

Continuing reinvestment in the patient who has multiple remissions and relapses and who is going to die anyway vs. not reinvesting as much any more.

Treating the patient as one always has in the past vs. taking into account the patient’s situation and treating him/her differently.

Rushing to create memorable experiences in the patient’s last days and pushing for as much meaning as possible in the time remaining vs. allowing nature to take its course, reminiscing, and simply being present with the patient.

Identifying a loss so it can be grieved by the patient vs. focusing more positively on the remaining potentials.

Responding to the Seriously Ill

This is probably the most important thing we can do. Encourage them to share their story with us by

saying something like, “Please, go on,” or “Tell me more.” This lets them know that we are interested in

hearing their story. Sharing their story, though painful, helps them sort out their feelings and promotes

healing by sharing an important experience with someone who cares. If they pause, wait silently for them

to continue. Never force them to talk about it. Allow them to proceed at their own pace.

Look

Maintain good eye contact. They may have difficulty sustaining eye contact with us, but we will be

sending a nonverbal message that says we are comfortable sharing their grief if we continue to make them

the primary focus of our attention.

Affirm

Respect their thoughts and feelings even if they aren’t exactly what we think they should be. This is

not usually a good time to attempt to correct faulty thinking.

Emote

Show emotions if we need to. We may think that our crying will make them feel worse, but shared

tears are a precious gift and often they are the only appropriate response to a crisis.



Find a balance between the professional goal of “helping someone in need” and the relational goal of

“sharing the dying experience.”

Touch

If words aren’t easy, a hug or holding a hand can say it all. People in grief often need much more

meaningful touching than usual. This includes the males in the family. They are often the forgotten

grievers.

Replenish

We are able to meet their needs to about the same extent our own needs are met. We need to know

our limitations. For example, donating our blood is a great gift for others; however, we never give it all at

once!

Tips to Remember when Visiting the Seriously Ill

1. Leave our personal problems and fears at the front door. Be there for the individual and focus on

them. We can’t “fix” what is going on. “Being there” (pastoral presence) for them is what is really

important.

2. Keep in mind the importance and power of touch. Holding a hand, stroking an arm softly, or

simply patting the person’s shoulder can be soothing and reaffirming for the patient/resident.

3. Keep body language in mind. Convey caring with an open posture and good eye contact. Sit or

stand close and lean forward toward the patient/resident.

4. Listen. This is possibly the most important tip that can be given. Focus our attention on what they

are saying. Encourage them to talk. Ask for clarification if we need it. We need to not feel as if we have

to have all the “right answers” to everything. We should give ourselves permission to be silent. This

silence often gives the patient/resident an opening to reflect and continue speaking.

5. Be real in expressing our own emotions. It is important to feel that we can laugh or cry with

someone who is seriously ill. Only be careful to keep our focus on meeting the patient/resident’s needs.

Do not “dump” our own fears or grief on the sick person so that they feel they must comfort us. It is okay

to say that we are uncomfortable or that we do not know what to say, or even that we wish we could make

things better.

6. Be familiar with Dr. Kubler-Ross’ five “stages” of death and dying.

7. Remember that hearing is the very last sense to go. So continue to express love and positive

statements to a person who appears non-responsive.

8. Watch our timing. Keep our visits brief if the patient/resident is tired.

Appendix Reading

In the appendix section of this chapter there is information about the “dying process” and how to

counsel both the patient/resident and his/her family through the various phases. The common fears

associated with dying will also be discussed, along with a detailed description of the physical and

emotional changes that may take place right up to the moment of death. The healthcare Chaplain can play

an invaluable role during the entire process, not only with the patient/resident and his or her family, but


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with the nursing staff as well. Familiarity with these practical guidelines will help us to be more at ease

with all parties concerned and will enhance our chaplaincy care in these situations.11

Chapter Assignments

1. Interview a nurse, social worker and physician who work with dying patients or residents. After

spending several minutes in Bible study, reflection and prayer on this issue, write a two-page summary

and evaluation of your insights from this experience and discuss your findings with the Teaching

Chaplain.

2. Read a book on ministry to the dying and write a one-page summary of it. Discuss insights with

your Teaching Chaplain.

3. After spending time in Bible study, reflection and prayer on terminal issues, write a two-page

essay on “How Best to Minister to a Dying Patient/Resident” (include Scripture to support your points)

and discuss it with the Teaching Chaplain.

4. Role-play with the Teaching Chaplain about ministering to a dying patient.

5. Make rounds. Debrief with your Teaching Chaplain.

6. Write a verbatim of a visit with a terminal patient/resident or the family member. Schedule a peer

group to evaluate it. Discuss your learning issues with your Teaching Chaplain.

7. Study “Skeletal System” section in the Medical Terminology Manual to familiarize yourself with

these common medical terms and surgical procedures.

8. Interaction with your Teaching Chaplain. Write out your response to each of the following

questions and scenarios and then discuss each one with the Teaching Chaplain.

a. If you find yourself feeling uneasy when visiting a seriously ill patient/resident, what are

some of the factors you need to consider? How can you prepare effectively for the visit?

b. When a dying patient/resident wants to unburden his/her heart about past failures, sins, or

unhappiness, why is it important for you to listen without judging?

c. A patient/resident has terminal cancer. He cheerfully tells you that God is going to heal him.

What is your response?

d. A patient/resident makes it clear to you that death is natural and he is not afraid. How would

your respond?

e. A patient/resident says, “These damn doctors don’t know the pain I’m in! They don’t know

what the hell they’re doing!” A typical response might be to say something like, “Oh, I’m

sure they’re doing the best they can.” What would be a better response?

f. The patient/resident is nearing death, but he is conscious and aware of his surroundings. He

tells you that the doctors and nurses and his family and friends are calling on him less and

less. How can you help?

g. A seriously ill patient/resident sees you walk in. She says nothing, but turns away and begins

weeping. How do you respond to this person?

11 For those interested in chaplaincy care within the context of Hospice care, there is a supplemental chapter to the

HCMA Clinical Pastoral Education Curriculum on Hospice Ministry. Contact the HCMA Office if interested in

receiving a copy of this material.



h. What should you do if you are in the room with a patient/resident, the family is present, and

the person dies?

i. Role-play with your Teaching Chaplain on ways you can offer genuine hope to a terminally

ill patient/resident (Christian or non-Christian) without offering false hope.

j. Describe the difference between accepting the truth of impending death and a hopeless

resignation to it.

k. The patient/resident is expected to die in a matter of weeks from widespread cancer of the

lungs. She asks you, “What will death be like? What would you feel if you were me?” What

do you say to her?

l. Share with your Teaching Chaplain how you would explain to a family that their terminally

ill loved one needs to talk about his/her dying.

m. Review with your Teaching Chaplain the fears that are most commonly observed in the dying

process. Try in your next few visits with the terminally ill to see if you recognize any of these

fears while you interact with your patients/residents.

n. Discuss ways in which you could be helpful to the family at the time of the death of their

loved one. How would your assistance differ if the patient/resident was:

A small child?

An elderly patient/resident?

A young father?

A teenager?

9. Case Studies. Read the following cases and explain how you would provide chaplaincy care in

each situation.

a. The patient is a 29 year old woman. She is a very outgoing, energetic, vibrant person. You

know that yesterday she was informed by the physician that her right breast would have to be

surgically removed due to cancer. However, you also know that the patient was informed

about the full implications of her diagnosis. There seems to be a clear indication that the

cancer may have already spread. The prognosis for her is actually very poor with the

likelihood that she may die very soon. You know that the patient thinks she will recover

quickly after the operation. You are visiting the patient to prepare her for surgery the

following day.

b. The patient is a 20 year old woman. She is an outstanding ballet dancer. She has dreams of

becoming a professional ballet dancer. Having experienced pain in her right leg, she went to

the doctor. He ordered some tests. She’s now in the hospital for a biopsy on her right leg.

Cancer has been discovered in the lower thigh and it’s necessary that her leg be amputated

immediately in order to decrease the chances of the cancer spreading. The doctor has told you

there is a very strong chance that the cancer has already spread, leaving the patient in danger

for her life. The parents are at the bedside as you enter to provide chaplaincy care prior to the

operation.

Chapter Resources

The following annotated bibliography is not intended to be exhaustive in its content, nor does it

contain all the latest resources. HCMA does not endorse all of the ideas expressed in all of the resources

listed here. Some of the sources are given simply to expose us to a variety of viewpoints on the subject. It


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is expected that even in places of disagreement we will reflect upon and think critically regarding our own

views rather than simply dismissing views that may run counter to our own.

Albers, Gregg R. Counseling the Sick and Terminally Ill (Resources for Christian Counseling Series, vol.

20). Dallas, TX: Word, 1989. Gregg Albers’ book on counseling the terminally ill is part of the Resources for Christian Counseling series, a

series which combines the best insights of medicine and psychology with biblical truth. It is helpful in

understanding illness from a medical perspective.

Anderson, Megory. Attending the Dying: A Handbook of Practical Guidelines. Harrisburg, PA:

Morehouse, 2005. This practical and concise handbook provides a brief overview of what to expect and how to respond to the

needs of someone who is dying.

Aries, Philippe. The Hour of Our Death: The Classic History of Western Attitudes Toward Death over the

Last One Thousand Years, 2nd ed. London: Vintage, 1982. Reveals a pattern of gradually developing evolutionary stages in our perceptions of life in relation to death, each

stage representing a virtual redefinition of human nature.

Asimakoupoulos, Greg. “Shepherding in the Shadow of Death.” Leadership 15.2 (1994): 104-109.

Bane, J. Donald, Austin H. Kutscher, Robert E. Neale, and Robert B. Reeves, Jr., eds. Death and

Ministry: Pastoral Care of the Dying and the Bereaved. New York: Seabury, 1975.

Bernard, Jan, and Mary Schneider. The True Work of Dying: A Practical and Compassionate Guide to

Easing the Dying Process. New York, NY: Avon Books, 1997. A holistic guide for the dying and their loved ones draws on the stories of patients, caregivers, and hospice

workers while explaining how to find emotional and spiritual healing.

Bluebond-Langner, Myra. In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child. Princeton, NJ: Princeton University, 2000.

Through a series of narrative portraits, she draws us into the daily lives of nine families of children at different

points in the natural history of the illness—from diagnosis through the terminal phase. In these portraits, as

family members talk about their experiences in their own words, we see how parents, well siblings, and the ill

children themselves struggle, in different ways, to contain the intrusion of the disease into their lives.

Bone, Roger C. Reflections: A Guide to End of Life Issues for You and Your Family. Evanston, IL:

National Kidney Cancer Association, 1997. “I am a physician and I am dying of metastasis of renal carcinoma. As I write these words, I understand I may

live a week, a month, a year–perhaps two. If I beat all the odds, I may live five years. I have spent the majority

of my adult life as a clinician, author, researcher, and professor. As a result, I have felt a strong impulse to write

about the mental, spiritual, and practical aspects of the dying process.”

Braham, Mary Ann. Ministry to the Sick and Dying. Bloomington, IN: AuthorHouse, 2002. Leads the reader through the Biblical basis for ministry to the dying. It also gives practical tips for those

ministering spiritually to the sick. Readers will learn how to plan a hospital visit that will include a spiritual

assessment and pointers on how to talk to the patient.

Buckman, Robert. I Don’t Know What to Say: How to Support Someone Who is Dying. Boston: Little,

Brown, 1988. Dr. Robert Buckman, an oncologist who was himself once diagnosed as having a fatal illness, confronts these

questions: What should a patient be told about his or her illness? How can the patient's supporters cope with

demands that may seem angry and irrational? What are the crucial differences between caring for a dying

parent, spouse, or child? How can you help someone dying from AIDS, cancer, or a dementing illness?

Byrock, Ira. Dying Well. New York: Riverhead Trade, 1998. Through the true stories of patients, he shows us that a lot of important emotional work can be accomplished in

the final months of life. It is a companion for families, showing them how to deal with doctors, how to talk to

loved ones—and how to make the end of life as meaningful and enriching as the beginning.



Callanan, Maggie, and Patricia Kelly. Final Gifts: Understanding the Special Awareness, Needs, and

Communications of the Dying, reprint edition. New York: Simon & Schuster, 2012. In this book—now updated with new material—the authors (hospice nurses) share their intimate experiences

with patients at the end of life, drawn from more than twenty years’ experience tending the terminally ill.

Carroll, David. Living with Dying: A Loving Guide for Family and Close Friends. Revised ed. New York:

Marlowe, 1991. This is a question-and-answer format guide written for a general readership, covering almost every aspect of

death and bereavement in today’s society.

Cauhill, Rita. The Dying Patient: A Supportive Approach. Boston: Little, Brown, 1976.

Chapin, Shelley. Within the Shadow: A Biblical Look at Suffering, Death and the Process of Grieving.

Wheaton, IL: Victor, 1991. The author had cancer and was expected to live only 9 months more. She wrote this book many years later

about how to live within the shadow of suffering and death.

Chidester, David. Patterns of Transcendence: Religion, Death and Dying. Belmont, CA: Wadsworth

Pub., 1990. This cross-cultural text examines social, religious, and cultural approaches to death and dying across Eastern

and Western cultures and religious traditions. Organization of the book begins with an examination of death and

dying among non-literate peoples in different parts of the world, then covers Hindu, Buddhist, Chinese, and

Japanese approaches, Western patterns of transcendence (ancient Middle East, Judaic, Christian, and Islamic),

and concludes with a chapter on death and dying in contemporary America. It discusses four patterns of

transcendence: ancestral, experiential, cultural, and mythic.

Churchill, Larry R. “The Human Experience of Dying: The Moral Primacy of Stories Over Stages.”

Soundings 62 (1979):35-36.

Cobb, Mark. The Dying Soul: Spiritual Care at the End of Life. Buckingham: Open U, 2001. What do we mean when we talk about spirituality and how do we provide spiritual care? This book sets out an

understanding of this complex domain, describing how spirituality is experienced and expressed, and looks at

the impact of terminal illness. The author argues that if we are to recognize spirituality as a significant aspect of

living and dying, then care providers must develop an interesting, consistent and effective approach. Therefore,

issues of training, policy and practice all need to be addressed. Spirituality is often represented as the fourth

pillar of palliative care, and yet it is often the least developed area in terms of both theory and practice.

Originating from the author's clinical and teaching experience, this book aims to explore the concepts, issues

and practical implications of spirituality in care.

Committee on Medical Ethics, ed. Toward a Good Christian Death: Crucial Treatment Choices. New

York: Morehouse, 1999. In this volume, the choices and considerations we face are laid out in plain, clear language. In an accessible

question-and-answer format, the Committee explores Christian understandings of the end of life, advance

directives, choosing surrogate decision makers for our health care, the use and selection of various life-

sustaining treatments, caring for those in pain and suffering, and dealing with the issues of assisted suicide and

euthanasia. The book includes a chapter on the impact of our changing health care systems, and appendices full

of resources for making decisions.

Davidson, Glen W. Living With Dying: A Guide for Relatives and Friends. Revised edition. Minneapolis:

Augsburg, 1990.

Davies, Bette, et. al. Fading Away: The Experience of Transition in Families With Terminal Illness

(Death, Value, and Meaning Series). Amityville, NY: Baywood Pub., 1995. This book comes out of an in-depth, qualitative study of the experiences of twenty-three families in which one

parent was dying of cancer. The study attempted to better understand the impact of terminal illness on the entire

family system and sought to develop a theoretical framework that would guide the assessment of and services to

such families. As a result of interviews with patients, spouses and their adult children over three phases of the

study, the process of "fading away" was identified and conceptualized in terms of various phases which


Terminal Issues

contributed to this process. The book is not a research report but rather presents more generally the ideas that

developed from the study, with two purposes: to increase the reader's understanding of particular experiences

that families encounter when dealing with terminal illness, specifically cancer. The intended readership also

includes families themselves: to propose guidelines for care to be considered by practitioners working with such

families.

Delbene, Ron. Into the Light: Ministering to the Sick and Dying. Nashville: Upper Room, 1988. Goodreads review: Wow, what a great book on prayer, and helping a loved one when they are sick or dying. It

is simple to access, an easy read to pick up and gain perspective, hints for care, and support for prayer. Breath

prayer has a way of empowering the sick and their families in a time of confusion, and hopelessness.

Dennis, Dixie. Living, Dying, Grieving. Sudbury, MA: Jones & Bartlett, 2008. Many students wonder what it is like to die or how to cope when someone they love dies. This book helps

answer these important questions and provides a mature understanding of what death really is. Taking a “life

education” approach, this book offers helpful tips and techniques for mastering a fear of death, suggests helpful

ideas for taking care of the business of dying, and encourages students to live longer by adding excitement into

their lives. With its unique balance of facts and emotions, both of which surround living, dying, and grieving

across cultures and religions, the text gives students the perspective to effectively cope with death and the

effects it will have on their lives.

Doka, Kenneth J. Counseling Individuals with Life-Threatening Illness. Second ed. New York: Springer,

2013. From the Foreword: “Doka draws on the classic and contemporary literature as well as his own pedagogy and

practice in death and dying to offer orienting concepts for the whole spectrum of care people may require when

illness intrudes into their lives. For each phase of the illness trajectory...he offers intelligent attention to the

problems and prospects people confront, and in countless examples of actual clinical situations he brings to life

the concepts that inform compassionate care.”

———. Death and Spirituality (Death, Value, and Meaning Series). Amityville, NY: Baywood Pub.,

1993. It seeks to reach two, perhaps overlapping, audiences. First, it considers the needs death-related counselors and

educators, seeking to provide them with both a sense of the norm of religious tradition and the religious and

spiritual issues that might arise in illness and bereavement, as well as suitable interventions, approaches, and

resources that might be useful in assisting clients in examining and resolving such issues. The book also speaks

to the complementary needs of clergy who also may wish to assist parishioners and others as they face the

spiritual and psychological crisis of dying and grief.

———. Living with Life-Threatening Illness: A Guide for Patients, Their Families & Caregivers. Hoboken, NJ: Jossey-Bass, 1998. A hands-on guide for patients, families, and caregivers on how to live an affirming existence while facing the

physical and spiritual traumas of life-threatening illness.

Doka, Kenneth J., and Joyce Davidson, eds. Living With Grief: When Illness Is Prolonged. Philadelphia,

PA: Taylor & Francis, 1997.

Doss, Richard W. The Last Enemy: A Christian Understanding of Death. New York: Harper & Row,

1974.

Garfield, Charles. “The Dying Patient’s Concern With Life After Death.” In Life After Death, edited by

R. Kastenbaum. New York: Springer, 1979.

Glaser, Barney G., and Anselm L. Strauss. Awareness of Dying. Edison, NJ: Transaction Pub., 2005. The authors use their finely detailed observations to develop theoretical constructs that will be of use in many

other interactions and situations. Awareness of Dying was the first study of dying in hospitals, and has proven a

useful handbook for chaplains in confronting the many ethical and personal problems that arise in the dying

situation.

Gram, Robert L. An Enemy Disguised: Unmasking the Illusion of Meaningful Death. Nashville: T.

Nelson, 1985.



Green, James W. Beyond the Good Death: The Anthropology of Modern Dying. Philadelphia, PA:

University of Pennsylvania Press, 2012. The author takes an anthropological approach, examining the changes in our concept of death over the last

several decades. He looks at a number of contemporary secular American death practices that are still informed

by an ancient religious ethos.

Hamilton, Michael, and Helen Reid, eds. A Hospice Handbook: A New Way to Care for the Dying. Grand

Rapids, MI: Wm. B. Eerdmans, 1980.

Harwell, Amy. Ready to Live, Prepared to Die: A Provocative Guide to the Rest of Your Life. Wheaton,

IL: Harold Shaw, 1995. With a hopefulness that never loses touch with reality, Harwell accompanies her readers through the mundane

tasks involving health-care directives, legal documents, and funeral arrangement, and on to the profound

opportunities of saying good-bye to those we love. Each step of the journey offers possibilities to grow and

discover God anew.

Hinton, John. Dying. Baltimore, MD: Penguin, 1967.

Johnson, Christopher, and Marsha G. McGee, eds. How Different Religions View Death and Afterlife.

Philadelphia, PA: Charles Press, 1991. This book presents an objective, thoughtful and practical explanation of the often-complicated subjects of death

and afterlife.

Kalina, Kathy. Midwife for Souls: Spiritual Care for the Dying. Boston: Pauline Books & Media, 2011. Revised to include a new section of inspiring stories and lessons learned in hospice ministry.

Kalish, R. A. “The Onset of the Dying Process.” Omega 1.1 (1970): 57-69.

Kessler, David. The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final

Chapter, revised ed. New York: Harper, 2007. In gentle, compassionate language, the author helps us through the last chapter of our lives. Author David

Kessler has identified key areas of concern: the need to be treated as a living human being, the need for hope,

the need to express emotions, the need to participate in care, the need for honesty, the need for spirituality, and

the need to be free of physical pain.

———. The Rights of the Dying: A Companion for Life’s Final Moments. New York: Harper Collins,

1997. A leader in the hospice-care movement presents a compassionate and honest guide for people confronting life-

challenging illnesses and those who care for them, introducing seventeen rights that allow patients and their

families to face death with dignity.

Kopp, Ruth. Encounter with Terminal Illness. Grand Rapids, MI: Zondervan Publishing House, 1980.

———. When Someone You Love Is Dying: A Handbook for Counselors and Those Who Care (Ministry

Resources Library). Grand Rapids, MI: Zondervan, 1980.

Kübler-Ross, Elisabeth. Death: The Final Stage of Growth. New York: Simon & Schuster, 1997. Once we come to terms with death as a part of human development, the author shows, death can provide us with

a key to the meaning of human existence.

———. Living with Death and Dying. New York: Macmillan, 1997. In this compassionate and moving guide to communicating with the terminally ill, Dr. Elisabeth

Küebler-Ross, the world's foremost expert on death and dying, shares her tools for understanding how

the dying convey their innermost knowledge and needs. Expanding on the workshops that have made

her famous and loved around the world, she shows us the importance of meaningful dialogue in

helping patients to die with peace and dignity.

———. On Death and Dying. New York: Macmillan, 1969.


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Through sample interviews and conversations, she gives the reader a better understanding of how imminent

death affects the patient, the professionals who serve that patient, and the patient's family, bringing hope to all

who are involved.

———. Questions and Answers on Death and Dying. New York: MacMillan, 1974. This companion volume to On Death and Dying consists of the questions that are most frequently asked of Dr.

Kübler-Ross and her compassionate answers. She discusses accepting the end of life, suicide, terminal illness,

euthanasia, how to tell a patient he or she is critically ill, and how to deal with all the special difficulties

surrounding death.

Kuhl, David. What Dying People Want: Practical Wisdom for the End of Life. New York: PublicAffairs,

2002. Presents ways of finding new life in the process of dying, understanding the inner reality of living with a

terminal illness, and addressing the fear of pain, as well as pain itself. He also offers concrete guidance on how

to enhance doctor/patient relationships and hold family meetings, and provides an introduction to the process of

life review.

McNees, Pat. Dying: A Book of Comfort. Lebanon, IN: Grand Central Pub., 1998. In this treasury of life-affirming passages, more than 40 celebrated writers, thinkers, and religious figures from

various faiths speak eloquently on the nature of dying and provide words of comfort for those left behind.

Meyer, Charles. Surviving Death: A Practical Guide to Caring for the Dying & Bereaved. Mystic, CT:

Twenty-Third, 1988. Meyer offers level-headed advice for coping with death and its aftermath. Surviving Death includes chapters on

“Pulling the Plug,” “Hastening the Inevitable,” and the issue of an afterlife.

Mills, Liston O. Perspectives on Death. New York: Abingdon, 1969.

Milner, John. Struggles in Death: Or Scenes I have Witnessed, and Lessons I have Learned When Visiting

the Sick and the Dying (1869). Whitefish, MT: Kessinger, 2008. This book was originally published prior to 1923, and represents a reproduction of an important historical work,

maintaining the same format as the original work.

Moll, Rob. The Art of Dying: Living Fully into the Life to Come. Downers Grove, IL: InterVarsity, 2010.

Moll provides insight into death and dying issues with in-person reporting and interviews with hospice

workers, doctors, nurses, bioethicists, family members and spiritual caregivers. He weighs in on bioethical and

medical issues and gives guidance for those who care for the dying as well as for those who grieve.

Nouwen, Henri J. M. Our Greatest Gift: A Meditation on Dying and Caring. San Francisco:

HarperSanFrancisco, 1995. A meditation on dying and caring, the author gently and eloquently reveals the gifts that the living and dying

can give to one another.

Nuland, Sherwin. How We Die: Reflections on Life’s Final Chapter. New York: Vintage, 1995. New edition includes an all-embracing and incisive afterword that examines the current state of health care and

our relationship with life as it approaches its terminus. It also discusses how we can take control of our own

final days and those of our loved ones.

Pattison, E. Mansell. The Experience of Dying. Upper Saddle River, NJ: Prentice Hall, 1977.

Pollin, Irene. Medical Crisis Counseling: Short-Term Therapy for Long-Term Illness. New York: W. W.

Norton, 1995. This work describes the personal and social burden created by chronic health conditions, emphasizing the need

for specialized medical crisis counseling to support people's adjustment to them. The core of the text is a

detailed presentation of Irene Pollin’s model, illustrated with numerous cases. Individual, family and group

counseling techniques focus on the eight expectable issues surrounding chronic illness: control, self-image,

dependency, stigma, abandonment, anger, isolation and death.

Rando, Therese A. Clinical Dimensions of Anticipatory Mourning: Theory and Practice in Working with

the Dying, Their Loved Ones, and Their Caregivers. Champaign, IL: Research Press, 2000.



Introduction-Anticipatory Mourning, Part 1-Knowledge and Theory, Part 2-Anticipatory Mourning from

Different Perspectives, and Part 3-Applied Cases. Each part has many sections.

———. Grief, Dying, and Death: Clinical Interventions for Caregivers. Champaign, IL: Research Press,

1984. Early chapters of this book address the issue of bereavement, why it is necessary and how to work with

individuals and families who are hurting from a loss. The latter half of the book looks at the issue of terminal

illness care. Dr. Rando presents a sensitive but realistic approach to the difficult issues to be faced in the dying

process. She offers many practical suggestions for the caregiver who is working with both individuals and

families.

———. Loss and Anticipatory Grief. Lanham, MD: Lexington Books, 1986.

Richards, Larry, and Paul Johnson. Death and the Caring Community: Ministering to the terminally Ill (A

Critical Concern Book). Portland, OR: Multnomah, 1980. The book takes a careful look at how the community can express God's love to the dying. He shows how not

only medical professionals and the clergy, but families and members of local congregations can communicate

Christ's love to the terminally ill.

Rosen, Elliot. Families Facing Death: A Guide for Healthcare Professionals and Volunteers. Hoboken,

NJ: Jossey-Bass, 1998. A down-to-earth and highly practical guide, this book explains and illustrates the relationship between family

systems, illness, and loss. This updated paperback edition includes theoretical information along with specific

suggestions for developing the important skills needed to manage psychosocial symptoms in the patient and

family, both during illness and after death. The author explains how to understand the dynamics of the family as

an interactive, intradependent system. He also explains how to help families define and facilitate the tasks they

must take to adjust to illness and loss.

Satterly, Lamont R., and Michael J. Boyle. If I Should Wake Before I Die. Surry Hills, NSW, Australia:

Search Foundation, 1997. Filled with scriptures, poetry, and prose from all religions, this comforting guidebook, written by a hospice

chaplain, offers peace to those who understand that they are constantly moving toward the eternal.

Scherzer, Carl J. Ministering to the Dying. Upper Saddle River, NJ: Prentice Hall, 1963. This volume offers helpful pastoral direction in meeting the emotional and spiritual needs of the patient and his

family. Discussed here are the heart and cancer patient, the suicide, accidental and natural death. Actual case

illustrations are given, with attention to varying age groups. Included are scriptural readings, prayers and brief

orders for baptism, communion and last rites from the respective liturgy of the Protestant, Roman Catholic and

the Jewish faiths. Expressions for specific situations guide the pastor in the ministry of the dying.

Sharp, Joseph. Living Our Dying: A Way to the Sacred in Everyday Life. Reprint ed. New York: Hyperion,

1997. A chaplain and long-term survivor of AIDS demonstrates how acceptance of death through spiritual awareness

can make life more fulfilling and provides poetry, prayer, and quotations for inspiration.

Sittser, Gerald Lawson. When God Doesn’t Answer Your Prayer. Grand Rapids, MI: Zondervan, 2003. In this thoughtful and beautifully written book, the author moves beyond easy answers and religious formulas to

explore the goodness and greatness of a God who cannot be controlled but can be trusted. It takes an honest and

probing look at the problem of unanswered prayer. In doing so, it draws us ever deeper into a relationship with

the God who is the end of all our prayers, the object of our faith, the one who fulfills our deepest longings.

Smith, David. Partnership with the Dying: Where Medicine and Ministry Should Meet. Lanham, MD:

Rowman & Littlefield, 2005. This book is a clarion call for new, practical, and vital forms of education, support, and commitment,

particularly within the churches, in the cause of improving care for the dying.

Smith, Harold Ivan. Finding Your Way to Say Goodbye: Comfort for the Dying and Those Who Care for

Them. Notre Dame, IN: Ave Maria, 2002.


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Written by a person who has been comforting and counseling terminally ill people for years, this book offers

guidance, support, and encouragement for both those who are approaching death as well as their families,

friends, counselors, medical and hospice practitioners, and chaplains. Consisting of short “chapters,” each

including a spiritual reflection, Smith moves the reader or caregiver from “admitting that you know” to

“finishing the race.”

Walton, Charlie, and Eugene D. Wheeler, eds. Packing for the Big Trip: Enhancing Your Life through

Awareness of Death. Tucson, AZ: Pathfinder, 1997. Gives the reader an honest confrontation with death and a resulting confidence, peace of mind, and new zest for

life.

Weenolsen, Patricia, and Bernie S. Siegel. The Art of Dying: How to Leave This World With Dignity and

Grace, at Peace With Yourself and Your Loved Ones. New York: St. Martin’s, 1997. With the help of case histories, exercises, and Weenolsen’s own warm yet straightforward advice, this life-

enhancing guide helps the dying person resolve the physical, emotional, and psycho-spiritual concerns unique to

this “end-time”.

Zonnebelt-Smeenge, Susan and Robert C. DeVries. Living Fully in the Shadow of Death: Assurance and

Guidance to Finish Well. Grand Rapids, MI: Baker, 2004. While the psalmist promises God's protection, it is difficult to face our mortality. But in doing so we better

prepare both ourselves and our loved ones for the reality of death. For those with a life-threatening medical

condition or terminal illness, this is an urgent concern. In response, Susan Zonnebelt-Smeenge, a psychologist,

and Robert C. DeVries, a pastor, offer this indispensable guide to the practical and spiritual concerns of dying.

With compassion and understanding, they offer sound advice on everything from accepting death as a part of

life, legal issues, and funeral planning, to the difficult spiritual questions asked regarding terminal illness and

life after death.



Appendix A

The Dying Person’s Bill of Rights12

I have the right to be treated as a living human being until I die.

I have the right to maintain a sense of hopefulness, however changing its focus may be.

I have the right to be cared for by those who can maintain a sense of hopefulness, however changing this

might be.

I have the right to express my feelings and emotions about my approaching death in my own way.

I have the right to participate in decisions concerning my care.

I have the right to expect continuing medical and nursing attention even though “cure” goals must be

changed to “comfort” goals.

I have the right to discuss and enlarge my religious and/or spiritual experiences, whatever these may

mean to others.

I have the right to not die alone.

I have the right to be free from pain.

I have the right to have my questions answered honestly.

I have the right not to be deceived.

I have the right to have help from and for my family in accepting my death.

I have the right to die in peace and dignity.

I have the right to retain my individuality and not be judged for my decisions that may be contrary to

beliefs of others.

I have the right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand

my needs and will be able to gain some satisfaction in helping me face my death.

I have the right to expect that the sanctity of the human body will be respected after death.

12 This Bill of Rights was created at a workshop on “The Terminally Ill Patient and the Helping Person,” in Lansing,

MI, sponsored by the Southwestern Michigan Inservice Education Council and conducted by Amelia J. Barbus,

associate professor of nursing, Wayne State University, Detroit, MI.


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Appendix B

10 Commandments for Helping the Seriously Ill13

I Be Afraid to Touch

Thou Shalt Not . . .

Touching is one of the most comforting modes of communication. A squeeze of the hand or a warm

embrace eloquently testifies to how much you truly care.

II Hesitate to Smile and Laugh

Not with forced frivolity, but with the sheer enjoyment of humorous incidents and stories. Serious

illness does not put a ban on laughter.

III Be Uncomfortable with Silence

Love understands love; it needs no words. Silence can be as supportive as shared conversation.

IV Offer Untrue Statements

When a patient may be doing poorly, don’t say: “You’re doing so well,” or “There’s nothing

seriously wrong with you,” or “You’ll soon be as good as new.” Everyone, the sick and healthy,

should be treated with dignity and not deceit.

V Believe You Need to Have All the Answers and Solve All the Problems

Simply listen and hear what is said. There are times when there are no complete solutions. Accept your

own limited self and commit yourself only to what you are able to do.

Thou Shalt . . .

VI Accept the Feelings of the Sick Person

Don’t pretend that everything is okay. A seriously ill person needs to express his/her emotions. You

can encourage that individual by saying: “What are you feeling?” or “Tell me what’s happening to

you,” or “It must be very hard for you.” Be sensitive to shifting feelings, whether they are sadness,

rage, panic or frustration.

13Earl Grollman, In Sickness and In Health (Boston: Beacon, 1987).



VII Share Time Together

Talking, listening to music, watching TV, playing cards or games can help fill lonely and

frightening hours with shared companionship.

VIII Offer Help

Actions do often speak louder than words, so say something like: “I’m going to the store. Can I

pick up something for you?” or “May I take your kids to the school picnic?” or “While the nurse is

away this afternoon, I’ll come over and sit with you.”

IX Locate Other Support

There may be many people and organizations who can offer invaluable assistance – family, friends,

church/synagogue, home health care, self-help groups, and medical organizations. These vital people

and groups can better manage the difficult moments for both patient and significant others.

X Respect the Privacy and Integrity of the Sick Person

If possible, call before you visit. You might inquire: “Do you feel like company this morning?”

Never assume you know what the person’s needs may be at any given moment. And always keep

knowledge of the patient confidential.


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Appendix C

Dos and Don’ts when Dealing with a Dying Person’s “Stages”

Chaplain Jeffrey R. Funk14

SEASON OF DENIAL ⎯ “No, not me!”

DO DON’T

1. Allow expression of denial.

2. Encourage them to talk and explore their

feelings.

3. Accept their refusal of treatment.

4. Accept their decisions.

5. Be there.

6. Listen.

7. Relate honestly with family.

8. Encourage them to talk about details.

1. Reinforce their denial.

2. Cut off the conversation or make “trite”

statements.

3. Contradict their comments.

4. Avoid them because of your own uneasiness

or fears.

5. Talk too much.

SEASON OF ANGER ⎯ “Yes, but why me!”

DO DON’T

1. Respect, understand and accept their strong

expressions of feelings.

2. Recognize your own fears or reactions.

3. Leave them alone when they request it, but

then return.

1. Answer with irritation.

2. React hastily because of your own impatience

or strong feelings.

3. Take their anger personally.

14 The following tables have been used by Chaplain Funk in church groups to help people understand how to

respond to those who are grieving. Used by permission.



4. Explain technicalities patiently.

5. Be tolerant whether they are being rational or

irrational.

4. Leave them in the dark about tests, etc.

5. Be afraid of their anger.

SEASON OF BARGAINING ⎯ “Yes, but spare me!”

DO DON’T

1. Listen.

2. Reassure them of their worth.

3. Give credence to and recognition of the

importance of the need to bargain.

4. Beware of some guilt association.

5. Help reach fruition, if feasible.

6. Help them identify the reason behind it.

1. Belittle or berate.

2. Be judgmental.

3. Panic because you feel helpless.

4. Overemphasize the guilt or play psychologist.

SEASON OF DEPRESSION ⎯ “Yes, and woe is me”

DO DON’T

1. Accept and listen.

2. Allow the right to cry and feel “down.”

3. Present realistic positives.

4. Give them peace and quiet.

5. Acknowledge anguish or anxiety.

6. Encourage close family to share.

7. Touch, communicate and cry with them.

8. Simply sit with them in silence.

1. Use hollow cheerfulness.

2. Suffocate and pamper.

3. Try to snap them out of it.

4. Talk too much.

5. Be afraid to share your own feelings.

6. Make demands in conversation, activity, etc.

7. Reprimand atypical or uncharacteristic

behavior.

SEASON OF ACCEPTANCE ⎯ “Yes, and so be it!”

DO DON’T

1. Let them be, but don’t leave them alone.

2. Be aware of a diminishing circle of interest.

3. Recognize their increased need for sleep and

quiet.

4. Minimize interference.

1. Neglect or leave them alone.

2. Associate this stage with giving up.

3. Give them a busy schedule.

4. Encourage them to fight back when they can’t

go on.


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5. Keep visits short.

6. Help family understand this stage.

7. Use non-verbal communication.

8. Create a calm, peaceful atmosphere.

5. Talk too much.

6. Let visitors “bug” them.

7. Let close family feel rejected.



Appendix D

Emotional Experiences of the Dying15

There are legitimate fears that most dying people experience. Anyone who takes a genuine interest in

them and demonstrates compassion toward them will be of immeasurable value to the dying person. They

should be encouraged to verbalize their fears. Their fears should be accepted as the point where they are

presently in their journey. (See Psalm 34:4; Isaiah 12:2-3; Mark 4:35-41; Hebrews 2:14-15.)

The fear of death can paralyze people and prevent them from being able to truly live. Burdened with

fear, people may lack power to dare great things for God; they may not be fully able to give and receive

love; and they may not be able to experience inner wholeness or soundness of mind and heart (see 2

Timothy 1:7).

The fear of death can also subject someone to bondage (Hebrews 2:14-15). But Jesus Christ never

intended for anyone to be defeated by the fear of death (John 14:1). God has given believers victory over

the grave through the death and resurrection of Jesus Christ (1 Corinthians 15:54-57).

Please realize that the fear of death does not necessarily indicate a lack of faith. Remember that Jesus

did not exactly look forward to His own death on the cross while He was praying in the Garden of

Gethsemane. Since He faced death with both “fear” and “faith,” He is able to understand a person’s fears

and will not condemn someone for expressing some of his or her fears in the face of death.

The seriously ill patient/resident may experience some or all of the following.

The universal of the conspiracy of silence. Dr. Edward F. Dobihal, founder and former director of the

Department of Religious Ministries at Yale-New Haven Hospital, says, “Health-care workers receive

gratification through healing, through giving. When they can no longer give, there is no gratification, so

the terminal patient is avoided.” Discussion with the patient is restricted for fear the topic of death will

arise. The family consciously or unconsciously tends to fall into this trap as well, thus robbing themselves

of open, honest and meaningful communication. (See Proverbs 15:23; 18:4, 21; 25:11.)

The universal of hope. Dr. Kubler-Ross states that hope is persistent during all the pre-death stages of

anticipatory grief. She was consistently impressed that even the most accepting patients left the possibility

open for some cure, for the discovery of a new drug, or the “last minute” success in a research project. It

is this glimpse of hope with which these patients maintain themselves through the lengthy periods of

suffering. Hope is a strong ally in the patient’s will to fight for life. It is the feeling that all this must have

some meaning that will pay off if they can only endure for a little while longer. Patients showed greatest

15 This information has been adapted by Jeffrey R. Funk from Ministering to the Sick and Dying by Carl J. Scherzer

(Prentice-Hall, 1963): 376-378.


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confidence in the doctors who allowed for such hope, realistic or not, and appreciated it when hope was

offered in spite of bad news. Conflicts arise in this area from two sources:

a. The conveyance of hopelessness on the part of the staff or family when the patient/resident still

needed hope.

b. A source of anguish came from the family’s inability to accept their loved one’s final stage,

clinging to hope when the person was ready to die and sensed the family’s inability to accept this

fact.

When hope is no longer probable, the dying person’s hopes are more short-term, or have something to

do with life after death, or the people they are leaving behind. Hope may also be replaced with fear: fear

of loss of life, fear of the process, and fear of what happens next.

Fears of the Loss of Life

1. A realization that their contribution to life is coming to an end. All that they are going to achieve in

life has been accomplished. To the young person, this death seems premature ⎯ it is an ugly

interference with their future goals in life.

2. A comprehension of the separation that death will bring from family, friends, achievements, etc.

3. A fear of being abandoned. Loneliness and fear of abandonment are one of the first emotions that a

child has and one of the last we have as adults while death approaches.

4. The fear of being forgotten. Each individual obtains status from the roles s/he has played in the lives

of others. To die is to lose that status and to realize someone else will take one’s place (See

Ecclesiastes 9:5).

5. The fear that their life will have no meaning.

6. The fear of leaving unfinished business. See examples of this in 2 Kings 20:1; Ecclesiastes 9:4, 10;

Matthew 16:21-23.

7. The fear of losing control and increasing dependence upon others (see Proverbs 3:21-26; 25:28).

Fears of the Process of Dying

8. The fear of becoming a burden ⎯ of imposing an inconvenience on their family and friends (e.g., the

time required in making hospital visits, etc.).

9. The fear of personal indignity ⎯ of being subject to medical procedures, to paraphernalia in the body

(e.g., catheters), or to the loss of body parts through surgery.

10. The fear of pain, mutilation, and shortness of breath. They wonder, “How will I die? Will I suffer?”

(See Job 33:19-28; Hebrews 5:7-9; Revelation 21:2-4.)

11. The fear of how they look physically to their loved ones, thinking they will become unlovable and

repulsive.

12. Reflected fear ⎯ the fear the patient sees in the eyes of others who visit. One young cancer patient

said, “I never knew what fear was until I saw it in the eyes of those caring for me.”

Fears of What Happens after Death Occurs

13. The fear of the unknown. That wonder about the unknown regarding how they will actually die, what

happens the moment after they die, or any other number of unknowns.



14. The fear for the future of the patient’s loved ones. They wonder, “What will happen to them after I

die?” Let them participate with the family in preparing for the future.

15. The fear of the fate of their body. They wonder, “What happens to me after I die?”

16. The fear of divine judgment ((Hebrews 9:27). They wonder, “Will God accept or reject me?”

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Copyright © 2016, HCMA 35

Appendix E

Spiritual Morphine: The Delusory Hope of Dying on Your Own Terms

By Kristina Robb Dover16

The doctors had said she had little more than six months to live. Since then, the cancer had

aggressively metastasized, but not enough to destroy her insatiable will to live. Esther, 72, talked

confidently about God’s power to heal both the pain and the cancer.

When I asked her where she drew her inspiration from, she cited the teachings of Joel Osteen and his

mother, Dodie Osteen, who, in a little book titled Healed from Cancer, attributed her own miraculous

recovery to a strict, daily regimen of reciting particular “healing” verses from Scripture. Invoking God’s

Word “against the devil” in the guise of aches and pains took its place next to a special diet of pureed

fruits and vegetables and occasional rounds of chemotherapy.

I decided that I would check out the Osteens’ teachings for myself. What I found was an innocuous,

pain-free form of faith with a quid pro quo for its adherents. “Claim God’s Word in your thoughts and

speech, and you will be healed, because God’s will for you is to be healthy and happy” is a good

summary.

With the exception of a few scarce references to Jesus Christ, Joel Osteen’s Your Best Life Now reads

more like a secular self-help manual than a Christian work. It offers “seven simple, yet profound, steps to

improve your life”: “enlarge your vision; develop a healthy self-image; discover the power of your

thoughts and words; let go of the past; find strength through adversity; live to give; and choose to be

happy.” Nothing about pain, or dying, or death, about lives that can’t be “improved” but have to be

endured.

Pain-Killing Care

Osteen’s teachings reflect one incarnation of a gospel touted for its painkilling properties. But

Esther’s enthusiastic conversion to the Osteens’ teaching points to a larger phenomenon of religion as

pain relief that both intrigues and disturbs me: its role in care for the dying.

16 This article by Kristina Robb Dover first appeared in Touchstone magazine 21, no. 1 (January/February 2008).

Ron Rosenbaum’s comments appeared in “Turn On, Tune In, Drop Dead” in the July 1982 issue of Harper’s,

reprinted in his book The Secret Parts of Fortune. Elisabeth Kübler-Ross’s comments are taken from her book

Death Is of Vital Importance. Simone Weil’s “The Love of God and Affliction” can be found in her book Waiting

for God.



As a hospice chaplain, in weekly meetings convened to discuss patients’ care, I took my seat next to

doctors, nurses, and social workers, all of whom had made it their single, greatest aim to relieve the pain

of terminally ill clients. This place at the table for religious faith deserves celebration: first, because it

signifies a growing appreciation for the spiritual dimensions of health and, in turn, significant advances in

understanding how to care for whole persons; and second, because it may be an example of how science

and religion are learning to converse with one another in a shared language.

Yet the highest, governing value presumed in these meetings was the necessity of freeing the patient

from pain, physical, emotional, or spiritual. It is this presumption that gives cause for concern. In my

experience as a hospice chaplain—and I know that others may have a very different and more extensive

experience—this value has become an implicit, guiding principle that directs chaplains in their ministry of

“pain relief.”

Some will dispute this interpretation. They argue that hospice is less about pain relief and more about

patient autonomy, but I am not so sure these are two different things. If the customer is “always right” (as

he usually is in the privatized hospice setting with which I am most familiar), the overriding goal of

palliative care is to keep the customer as comfortable as possible. Eliminating sources of pain and

discomfort is the most obvious way to do so.

If I am right about this principle, I think it relies on two unspoken, common assumptions.

Redemptive Death

The first is that the terminally ill patient is always right. Because he is on the threshold of death, he is

presumed to enjoy greater access to virtue and judgment than is attainable by those who dwell in the land

of the living. He attains a kind of sanctified status.

This attitude of reverence towards the dying is one that the journalist Ron Rosenbaum describes as

“an increasingly cultlike exaltation, sentimentalization and even worship.” He attributes its prominence at

least in part to the work of Elisabeth Kübler-Ross. Her books have become the standard texts for the

dying and those who care for them—as I discovered, having received many “recommended reading” lists

during chaplain residencies at two separate sites.

It may be true that while pain relief is a large part of hospice care, it is not an end in itself, but a

means of helping patients resolve various emotional and spiritual end-of-life conflicts. Even so, the use of

palliative medicine as a way to encourage the pursuit of emotional and spiritual wholeness is still about

helping the patient achieve his best death on his own terms.

The measure by which the success of this endeavor is evaluated is the degree to which the patient

expresses pain, physical, emotional, or spiritual. The standard for success, in other words, is whether the

patient “feels good” physically, emotionally, and spiritually.

The second assumption is that death, embodying a “natural” transition to a carefree afterlife, is a good

in itself. After reportedly studying some 20,000 cases of “near-death experiences,” Kübler-Ross

concludes that life after death is universally a “glorious experience” and a “pleasant reunion” of sorts:

“There will be a total absence of panic, fear, or anxiety”; “you will be very beautiful, much more

beautiful than you see yourself now”; and you “will always experience a physical wholeness.”

Everyone experiences this happy transition to a blissful new way of being. “Even the angriest and

most difficult patients, very shortly before death, begin to deeply relax, have a sense of serenity around

them, and begin to be pain free in spite of, perhaps, a cancer-ridden body full of metastases.”

Given this reassuring paradigm, it is no exaggeration to suggest that death attains an almost divine

status for its ability to redeem human beings from the sufferings of life.

To commemorate the life of a patient known by his children as a delinquent father and by the medical

staff as an ornery old man, the chaplain presiding at his memorial service played, in celebratory fashion,

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the Frank Sinatra hit, “I Did It My Way.” Tears were wept in reverence for a man who lived and died

“his” way, even though it may have been a wrong and destructive way.

The suggestion? That through death, an otherwise less-than-exemplary and miserable person had

become a kind of sage whose way of life called for emulation from his students, and that dying would be

as triumphant and carefree for this man as living his way had been.

Disturbing Implications

For the chaplain who is a “mere Christian,” this underlying principle of pain relief contains some

disturbing theological implications.

The first is that God is a God of grace only, not of judgment, with the implication that an orthodox

Christian understanding of human sin and our need for divine pardon is outmoded and inadmissible.

Guilt, regret, or a conviction of divine wrath only fosters unnecessary discomfort, and must therefore be

eliminated.

Where this belief plays out practically at the bedside of a dying patient is in the prescribed omission

of prayers of confession and petitions for God’s forgiveness: Unless the patient makes a specific request,

the chaplain is forbidden to suggest it, even if the patient is a Christian. Unless a patient clearly professes

a particular faith—the chaplain’s job is to summon a Catholic priest to perform last rites for Catholics, for

example—such religious practices are in fact discouraged.

In this context, the “meaning” that a patient derived from hosting cocktail parties or playing golf is as

significant for patient and chaplain as are expressions of his relationship with God. (After all, as the

commonly occurring assumptions go, the patient is always right, and death for all is nothing but a sublime

passage to a better place.) “Spirituality” in turn is reduced to little more than a list of personal preferences

and hobbies.

When I met him in the months before he died, Mr. Z. was a self-described “backslidden” Christian.

He had made a lot of mistakes in his life, and was notorious in his last days as the angry old man who had

it in for the hospital staff. Even his daughter spoke with ambivalence and regret about the way her father

had lived his life.

In the moments before he died, moments preceded by desperate cries for a quick end to his life, I was

at his bedside, and in a final prayer that included thanksgiving for his life, I asked God to “forgive the

things” he had “done and left undone.” Afterwards, I noted (among the “spiritual” interventions that

chaplains are required to chart for each patient) that I had “prayed for patient’s forgiveness.”

After reading my notes, a fellow chaplain and supervisor zealously interrogated me about why I had

felt it necessary to pray for forgiveness for Mr. Z. Unless Mr. Z. had vocalized in his dying moments that

he wanted forgiveness—which would have been nearly impossible in those last minutes of fleeting

consciousness—I was not to pray such a prayer. “You need to set your theology aside in interactions with

patients,” I was told.

Such a reprimand leads us to the second disturbing implication of this principle of palliative care: The

chaplain must leave his “theology” at the door before entering a patient’s room. The chaplain’s primary

purpose is to embrace the patient’s definitions of truth and salvation, whatever they might be, with the

goal of helping him feel affirmed and, in turn, pain-free and comfortable.

One colleague confidently declared that “No Evangelical Christian would ever be hired for a

chaplaincy position, because an Evangelical is not capable of leaving his views out of patient

interactions.” The presumption here that a chaplain can indeed set aside the system of beliefs that has

shaped his life fails to recognize the inextricable link between theology and practice—namely, that the

practice of “leaving one’s beliefs at the door” is in fact a manifestation of a particular theology.



Jesus’ Pain

In a great stroke of irony, then, the principle of freeing the patient from pain offers a version of

Christianity that, while vastly different in content, shares the same fundamental motivation to relieve pain

and promote happiness that drives Osteenism. While Osteen would have us eliminate pain with the

mantra, “Your best life now,” proponents of the hospice culture seek to conquer it with the advertisement,

“Your best death now.”

But is “feel-good faith” really in keeping with the church’s charter story? There I read of a life of pain

and discomfort for the man named Jesus and his band of followers. From his birth in a filthy stable, to the

scorn of his home town and the rejection of his own people, to his grisly death on a cross, Jesus chose a

life full of pain and discomfort.

His disciples did the same, rejecting easier ways to embrace the Way. Their path was not one of pain

purely for pain’s sake, or martyrdom for the sake of martyrdom. Pain was not their highest and governing

value, but neither was pain relief. They had come face to face with something more worthy of joyful

worship: rescue from the meaninglessness of existence and a claim on their life in the person of Jesus

Christ. For that, they would gladly suffer.

So I ask if we haven’t gotten Christianity just a little wrong when we turn it into just another means of

escape from what we all must face some day. Pain, after all, is itself not only inevitable but a necessity for

us: It is a reality check, a reminder of mortality, something anesthetic belief categorically denies.

Simone Weil goes so far as to say that in the same way that the natural phenomenon of a sunset

reminds us of the order and beauty of creation, so too does affliction—it is written into the delicate

structure of the universe to which human beings belong and ultimately must give heed. In her essay, “The

Love of God and Affliction,” she writes:

Each time that we have some pain to go through, we can say to ourselves quite truly that it is the

universe, the order and beauty of the world, and the obedience of creation to God that are entering

our body. After that, how can we fail to bless with tenderest gratitude the Love that sends us this gift?

By agreeing with Weil that even pain can minister God’s grace to us, I do not intend to glorify

suffering purely for suffering’s sake. There is nothing redemptive in suffering alone. Nor do I wish to

suggest that death is a good. The Bible is clear from start to finish that just as death did not belong to

God’s original plan for creation, death will not have a place in the heavenly resurrected life that God

promises to those who love him.

My unease is with a Christianity that in a highly therapeutic, health-obsessed Western culture

genuflects before the idols of comfort and happiness. A religion that assigns greater value to pain relief in

the here and now than to the lordship of Jesus Christ has only succeeded in erecting another golden calf,

with the damaging result that health and comfort and a pain-free death are falsely proclaimed as the

answer to the riddle of human existence.

Such misplaced worship is a far cry from “true religion,” understood as that “which binds us to God

as the one and only God,” in the words of John Calvin (a man, incidentally, racked with illness his whole

life). It falls prey to the kind of utilitarianism that Friedrich Schleiermacher once bewailed: religion that

exists not for its own sake, but as a means to an end—in this case, the relief of pain.

The Only Comfort

This brings me back to the quandary of my role as a chaplain to Esther, Mr. Z., and the many like

them, who, through either the empty promises of Osteenism or the misleading claims of hospice culture,

cling to the empty promises of a spiritual anesthesia with the hope that I, as their chaplain, would alleviate

their suffering once and for all.

Terminal Issues


Should I, like the good and able medical professionals with whom I work, attend to the bedsides of

the sick with the sole purpose of easing their pain? Is my role to administer a spiritual morphine drip? Or

am I called to deliver another proclamation, one that serves a greater, more life-giving end?

Perhaps the beginning of an answer to this question lies in the prayer that Jesus uttered in Gethsemane

on the eve before his crucifixion. “Father, if you are willing,” he pleads, “remove this cup from me; yet

not my will but yours be done.” In those words is the acknowledgment that no one is the ultimate master

of his destiny but that we live, rather, in submission to the will of the Creator.

And perhaps this reality is consolation enough, for in the words of the sixteenth-century landmark

document of the Protestant Reformation, The Heidelberg Catechism, there is but one clear answer to the

question, “What is your only comfort, in life and in death?” and it is “that I belong—body and soul, in life

and in death—not to myself but to my faithful Savior, Jesus Christ.”

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