LECTURE
An Inquiry about Clinical Death— Considering Spiritual Pain —Alfons Deeken

Sophia University, Tokyo, Japan(Received for publication on September 4, 2008)(Accepted for publication on November 13, 2008)

Abstract
According to a paper published by the International Work Group on Death, Dying and Bereavement, “Each person has a spiritual dimension.” That means each person has spiritualenergy and spiritual needs. In facing death, a patient suffers spiritual pain and needs spiritual care. This paper describes what spirituality and spiritual pain mean. It identifies nine
types of fears and anxieties about death which become a source of spiritual pain: 1. Fear ofpain; 2. Fear of loneliness; 3. Fear of unpleasant experiences; 4. Fear of becoming a burden
to the family and to society; 5. Anxiety towards the unknown; 6. Fear of death resulting
from fear of life; 7. Fear of death as a feeling that one’s life task is still incomplete; 8. Fearof death as fear of personal extinction; 9. Fear of death as fear of judgment and punishment
after death. Five types of spiritual pain that seem to be frequent among patients facing
death are discussed: 1. Loss of self-determination; 2. Loss of meaning; 3. Guilt feelings; 4.
Loneliness and isolation; 5. Loss of hope. Three ways of preventing or reducing excessive
fear of death and of lowering the various types of spiritual pain are suggested: 1. Death education; 2. Presence at the bedside; 3. Humor as an expression of love. (Keio J Med 58 (2) :110－119, June 2009)

Keywords: spiritual pain, fear of death, death education, humor
Introduction

hospices would probably encourage patients to raisequestions about their experience of spiritual pain.
The International Work Group on Death, Dying andBereavement has published a paper “Assumptions andPrinciples of Spiritual Care.” There we find these important statements: “Each person has a spiritual dimension.
In the total care of a person, his or her spiritual naturemust be considered along with the mental, emotional,
and physical dimensions… Facing a terminal illness,
death and bereavement can be a stimulus for spiritual
growth… Joy is a part of the human spirit. Humor is aleaven needed even, or especially, in times of adversity
or despair.”1
In part one, I shall describe what spirituality and spiritual pain are. In the second part, I shall introduce nine
types of fears and anxieties of death as sources of spiritual pain. Reducing a patient’s excessive fear or anxiety
of death means reducing his or her spiritual pain. This isan essential part of spiritual care.

I have accompanied dying patients in my native country, Germany, in the United States and in my adopted
country, Japan. There were numerous similarities in thetypes of spiritual pain experienced by patients in thethree countries. Spiritual pain can be recognized by thequestions the patients are asking, questions such as “Whyme?” Dying patients in Germany and in the UnitedStates asked more questions expressing spiritual pain.
Japanese patients seem to be more stoical, often refraining from asking questions of such a nature. Since spirituality and spiritual care are considered to be essential
parts of terminal care in the West, this may explain thegreater willingness of German and American patients toraise the issues of spiritual pain.
The reticence of Japanese patients is no proof that patients in this country do not experience spiritual pain.
Offering more spiritual care in Japanese hospitals andPresented at the 1565th meeting of The Keio Medical Society in Tokyo, May 23, 2008.
Reprint requests to: Alfons Deeken, Ph.D., Emeritus Professor, Sophia University, ℅ S.J. House 7-1 Kioicho, Chiyoda-ku, Tokyo 102-8571, Japan, E-mail:alfons@deeken.de110

Keio J Med 2009; 58 (2):110－119

In the third part, I shall discuss five types of spiritual
pain that seem to be frequent among patients facing
death. Through a multidisciplinary effort we can help adying patient to diminish his spiritual pain. In the fourthpart, I shall describe three methods of reducing spiritualpain.
What Are Spirituality and Spiritual Pain?
Spirituality is the human ability to be aware of ourselves, to think and reflect on ourselves, and to choose
values. Furthermore, it is the capacity to search formeaning, to establish relationships with other human beings and with a transcendent being (often referred to as
God).
Each person has a spiritual dimension and possesses
spiritual energy. By searching for meaning, by deepening
human relationships through love, and by establishingcommunication with a transcendent being, a person canexperience spiritual well-being and can grow as a humanbeing. Typical activities of spirituality are thinking,choosing values, searching for meaning, ethical reasoning, religious concerns, and humor as an expression oflove.
Loss of meaning, decrease in the ability of self-determination, lack of human communication, and the feelingof being disconnected with a transcendent being can often result in spiritual pain.
Thanks to the hospice movement, there was developed
a new interest in relieving the spiritual pain of dying patients. Spiritual pain is considered to be part of the total
pain. Cecily Saunders, the foundress of St. Christopher’s
Hospice in London, has stated as one of the aims of hospice care that there be relief of “total pain,” including thephysical, psychological, social and spiritual pain.2
Spiritual well-being of a patient is usually characterized by experiences of meaningfulness, hope, connectedness, communication and inner harmony. If a patient experiences opposite emotions, he or she feels spiritual
pain. Lack of self-determination, guilt feelings, meaninglessness, non-alignment, abandonment and loss of hope
resulting in despair are typical causes of spiritual pain.
Excessive Fear and Anxiety of Death as
the Cause of Spiritual Pain
A great number of patients confronting death sufferfrom an excessive fear or anxiety of death. This is frequently a major source of spiritual pain. By identifying
which type of fear is prevalent in a patient, caregivers
can try to reduce the excessive fear to a normal level.
I shall describe nine types of fear and anxiety that are
frequent in patients confronting death.
Since the time of Kierkegaard, it has become common
to distinguish between fear and anxiety. Fear refers to a111

definite and specific object which is the cause of fear; forexample, a snake, a disease or pain. Anxiety, in contrast,
is indefinite, unspecified, a mood that is not directed toward any particular object. Applying these two terms to
the confrontation with death, it would seem that both
fear and anxiety are plaguing man. His fears refer to thepain of dying and saying goodbye to his beloved ones, toloneliness and loss of all his property as well as to manyother concrete losses. But perhaps more painful than allthese fears is the deep anxiety in the face of death. It is a
general mood of anguish, doubt and uncertainty which
has no clear and definite objective. Man feels himself
threatened to the very core of his existence.
Fear and anxiety have a certain ambivalent character:they can be paralyzing and destructive if man allows
himself to be dominated by them. But they can also besalutary and occasions for human growth if man confronts them in the proper way as a challenge.
Fear of pain
Fear of death is frequently a fear of pain. Dying is usually seen as a painful experience. I have seen many people die, and it is my impression that, indeed, numerous
patients suffer much pain during the final agony. However, it is not only physical pain that dying patients fear.
Besides physical pain there is the second pain, which often is stronger than the physical pain of the body, namely
mental pain. Knowing that one has to die soon and has toleave behind all his or her loved ones and all possessions
can create a terrible mental pain. Many patients also fear
the third type of pain, social pain. This is often expressedin anxious concerns about the fate of one’s family members and their lack of financial security.
For some, social pain means suffering from one’s own
helplessness vis-à-vis their family. A young father may
suffer from the feeling that he cannot earn a salary any
more and has become a mere burden to his family. Finally,
there is the fourth pain, spiritual pain. Many patients suffer from a sense of meaninglessness of their life, from afeeling that they have achieved little and are now facing
an early death and an uncertain future. Fear of pain often
includes all the above four types of pain. Helping the patient to overcome these fears of pain means that one
must help him to alleviate all four types of pain. Concentrating only on controlling physical pain is not sufficient
to overcome the fear of pain. The hospice approach topain control is always directed to the “total pain.”
Fear of death as fear of loneliness
For many patients, the biggest source of fear is the fearthat at the final stage of dying, they will be left alone.
Fear of loneliness cannot be fully transcended for, indeed, man must in the last minute walk alone into the112dark night of death. However, we can greatly lessen thefear of the dying patient if we let him know that in the
dying process he will not be left alone, that we shall be
at his side till the very last moment.
Loneliness and isolation can take many different
forms. In recent years, I have heard frequently from Japanese nurses that grown-ups would not visit their dying
parents. Being busy with work seems to be the typicalexcuse. There is another loneliness when the patient cuts
himself off from everyone except his immediate family.
It is not rare that a patient does not want to see anybody,
does not want to talk to anybody, or does not want anybody to see him sick. Caregivers have to respect thewishes of a patient. However, such self-imposed isolation may result in an excessive spiritual pain of loneliness. Caregivers must look out for a potential change ofmind on the part of the patient.
Fear of unpleasant experiences
Many people have seen patients in hospitals who had
lost their natural human beauty. Thus they are afraid thatin the dying process they will present an ugly picture ofthemselves.
Lying in a bed is an embarrassing situation. Especiallywomen often fear that without their usual make-up or
their hair properly fixed they will look ugly. The wholeatmosphere of the hospital room may be offensive to theeyes and noses of the visitors: untidy bedclothes, bedpans, medical machines connected to the body of the dying patient, the body odors, etc. A long and painful disease may disfigure the body of the patient; extreme pain
may elicit negative emotions from the lips of the patient.
Especially persons who have throughout life put greatemphasis on a proper and dignified behavior and of presenting a pleasant image of themselves to the people
around them will often fear that during the last period of
their lives they will have to present an embarrassing negative self-image to their family and friends.
Fear of becoming a burden to the family or the society
Fear of becoming a burden to the family or the society
is frequent, especially among elderly patients. It is acommon source of spiritual pain. In Japanese culture,loyalty to the family and the society as well as the ethicalideal of not becoming a burden to others play importantroles in the education and in the general thinking of thepeople. Therefore, it becomes especially painful for Japanese to feel useless and to be a burden for the time,emotions and financial resources of one’s family. Manyelderly ladies who visited temples where one prays for asudden death (pokkuridera) answered to the question
why they wanted to die a sudden death: “Because I do
not want to become a burden to my family.”

Deeken A: Considering Spiritual Pain of Dying Patients

Since medical expenses are becoming more and more
exorbitant, the fear of becoming a financial burden willprobably become more acute in the future. Thus, it is ofgreat importance to assure the patient that his family
does not consider him a burden but will always see him
as a highly valued member of the family. Such assurance
is necessary to help the patient overcome this type offear of death.
Anxiety of death as anxiety towards the unknown
Modern man is accustomed to acquire knowledge
about all sorts of problems and thus to learn how to control the various situations he is confronting. However,death does not fit into this general pattern of controllable
situations. Here, man is confronted with the unknown,being unable to control his/her new situation. Anxiety
arises from the confrontation with the unknown and withbeing thrown into a passive role. This experience results
into spiritual pain.
Fear of death resulting from fear of life
There exists a close parallel between fear of death andfear of life. Perhaps it is basically the same human emotion that at times is scared of life, at times scared ofdeath. Or the same person may be afraid of life in his
younger years and begin to fear death at a later stage oflife. This close relationship of fear of life and fear ofdeath may be an important key for analyzing the presence of excessive death fear. Profound fear of life may
be an indication that the same person will probably suffer from an excessive fear of death when confronting an
incurable disease. Early discovery of this problem canbecome an important help to assess and reduce the patient’s fear of death.
Fear of death as a feeling that one’s life task is still incomplete
Many dying patients are suffering from the painful
feeling that their life task is incomplete. They compare
the dreams of their youth with the actual achievements
and feel a deep gap. Ending one’s life without finishing
one’s life task or without realizing one’s potential as ahuman person is a painful threat. Patients often become
overly negative with regard to their past achievements;
and tend to concentrate on the negative aspects, ignoring
their real achievements. Fear of death means for suchpeople primarily fear of not being able to achieve humanas well as professional fulfillment.
People in the caring profession can help such people toovercome part of their exaggerated fears by pointing out
the positive achievements and to help the patient discover a properly balanced view of his or her past life. It isKeio J Med 2009; 58 (2):110－119

important to show the patient that the dying process itself is not merely a passive waiting for the end but canbecome an important process of human growth. The dying process itself offers a challenge and is a means forfurther self-actualization. If the patient discovers that an
important part of his life task is still awaiting him by theway he responds to the challenge of dying, he will overcome the above mentioned fear of death and channel his
precious energy into the positive task of achieving a final
self-actualization in the process of dying.
Fear of death as fear of personal extinction
According to some psychologists, fear of personal extinction may be the most basic death fear. Self-preservation is one of the basic instincts of man; confronting
death means confronting the possibility of losing oneself
totally. As part of the self-preservation instinct, fear ofself-annihilation is a natural reaction.
For people who embrace the hope for a life after death,
deepening this hope can become a valuable way of transcending the fear of losing oneself in death. I have experienced frequently that such hope towards an eternal future is for some dying patients a way of overcoming thisfear of death.
Fear of death as fear of judgment and punishment afterdeath
For some patients, fear of death is primarily a fear of
judgment and punishment after death. Throughout thehistory of mankind, there has been a nearly universal belief that man will be judged after death, that the good
will be rewarded for their good deeds and bad will bepunished for their sins. Buddhism, Islam, Christianity as
well as several other religions express this fate after
death as entering into eternal happiness of heaven or being punished in hell. A sense of justice leads many patients to believe that they deserve some punishment for
the evil deeds they have committed. In caring for patients with such fears of punishment after death Christianspiritual caregivers often remind patients that God is not
a God of judgment but a God of love who is ready to forgive any failures on the part of man.
Five Types of Spiritual Pain
Loss of self-determination as spiritual pain
The need to freely choose, the need for self-determination and for the control of one’s own life is a basic needof man.
Throughout our life we highly value our right to freedom. Freedom is one of the greatest possessions of human beings. All around the world, people have become

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very sensitive about depriving persons of their humanrights. The right for self-determination has become a key
word in our modern culture. Philosophically speaking,one of the main foundations of man’s dignity and greatness lies in his capacity to freely choose.
Man’s freedom and his capacity to control his life areseverely threatened when he is hospitalized with an incurable disease. Lack of sufficient information or a paternalistic attitude on the side of a doctor may greatly
curtail a patient’s control of his life. The numerous discussions about informed consent and informed choice
are dealing with this issue.
Efficiency in running a hospital or lack of time on thepart of the staff may sometimes be the reason for curtailing a patient’s freedom and for taking away some of thecontrol of his life.
We must remind ourselves again and again that theneed for freedom and for self-determination is one of thebasic needs of a human person, also during the final
stage of life. Loss of self-determination is a frequentsource of spiritual pain.
The need for freedom includes also the need to be allowed to say goodbye and to die at the time the patient
feels appropriate. Here I am not talking about euthanasia
but about the permission family members and caregivers
have to give to a patient to end the struggle for mere survival. I have seen patients who reached Kübler-Ross’
fifth stage of acceptance or even what I like to call thesixth stage of expectation and hope for a new life beyond
death, but where the family or caregivers remained on
the stage of denial and would not give permission to thepatient for ending the futile struggle. This not only creates pain for the patient, it also deprives him of his freedom to self-determination and of his human dignity.
At an early stage of a serious illness, patients usually
try to preserve life at all costs. However, after a long andtiring battle against cancer, there comes a time when thepatient has become exhausted. The body is weakened bydrugs and various treatments. At some point the patientwants the permission to stop the futile struggle, the permission to die. Since some families are only thinking of
prolonging the fighting, even if it is painful for the patient, nurses have here an important role of teaching thefamilies when it is time to give permission to die. A
nurse may then tell the patient: “You have fought bravely
to live so long. You seem to be tired now. It’s all right tostop fighting.”
During our lifetime we often do things because we feelthat our family or company or society at large expects itfrom us. Patients often feel that their family wants themto keep fighting for life even if they do not have thestrength any more. For the family, to give permission todie can thus become the last act of respecting the dying
patient’s freedom.

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Loss of meaning as spiritual pain
The loss of meaning is for many dying patients a major
source of spiritual pain. Therefore, the search for meaning becomes an important task for overcoming this pain.
Our search for meaning can be divided into three different tasks: past, present and future. First we are looking to the past and search for meaning in our past life, in
our achievements and failures. We try to make sense ofwhat we have done so far. The second task is the search
for meaning in our present experience: the meaning in
our suffering, in our illness and in our facing death. The
third task is directed towards the future: is there any
meaning in our dying and is there a hope for an eternal
future?
Our search for meaning is closely related to our value
system. Many people will discover meaning in their pastlife knowing that they have achieved what they valued
much. For some it may be the feeling that they have developed their human potential to the fullest; for some it
may be the satisfaction of having raised a family; forsome that they have done good things for their fellow
human beings and have made this world a better place tolive in. Scholarly, artistic or economic achievements may
for some people become an important source of meaning. Loving one’s fellow men and loving God are central
for the meaning of life of most Christians.
The search for meaning in one’s past life is a very individual and personal quest. What is the role of the caregiver in this search for meaning? The caregiver cannot
create meaning for the dying patient, but he can help thepatient to search for and find significance in past experiences. He also can become a sounding-board or a partnerin the patient’s difficult search for meaning in sufferingand death.
Victor Frankl who went through the hell of the Auschwitz concentration camp discovered that precisely inextreme situations of suffering man’s will for meaning isof extreme importance. Frankl developed a logotherapy;“logos” for Frankl signifies “meaning.” Logotherapy focuses on the meaning of human existence, trying to assist
the patient to find meaning in his life. Frankl is fond of
quoting Nietzsche’s words: “He who has a why to live
for can bear with almost any how.”
The second task of searching for meaning is concernedwith the meaning of one’s present suffering and illness.
“Why did this happen to me?” “Why me?” are typicalquestions that express this quest for meaning. There is noeasy answer to the question of suffering. Most patients
do not expect so much an answer; what they are looking
for is a person that can listen to them and who can show
compassion. Cecily Saunders, the foundress of St. Christopher’s Hospice in London who has accompanied thousands of dying patients often refers to the words of Jesus
during his extreme suffering in the Garden of Gethse-

Deeken A: Considering Spiritual Pain of Dying Patientsmane: “Watch with me.” What he wanted most was thatin the loneliness of his agony the apostles would be “withhim.”
Although there cannot be an easy answer or “solution”
to the mystery of suffering and grave illness, there may
be three levels on which a suffering patient may discoversome meaning.
1) The expression or ventilation of his suffering inwords can become a healthy, cathartic discharge of emotions. If a family member or caregiver listens seriously
to the verbalization of the patient’s suffering or even encourages the emotional release, the patient will experience that he is not alone in his suffering, and the solidarity of a careful listener will support him.
2) The second meaning may be found in the very process of searching for meaning. Even if no clear-cut answer can be found, the patient may experience the intellectual and emotional effort as such as meaningful.
3) The third meaning may be found in the growth
process that a suffering patient goes through. We all havemet people who have gone through great sufferings andhave become more understanding, more compassionate
and more loving through their painful experience.
Here we may also consider the classic example of aquest for meaning in suffering as portrayed in the bookof Job in the Old Testament.
The search for meaning can express itself concretely ina shifting of values in life or as an adjusting of values.
During our healthy years, values like professional success, achievements, social position, acquiring property
and honor may have had high priorities. However, a patient suffering from an incurable disease cannot be satisfied by the same value priorities. In a shifting or adjusting of values, he may now put higher priority on relationship and communication. Since time is limited, time
takes on a new dimension. The preciousness of time may
become a high value on the priority list.
The third task in our search for meaning is directed towards the future: is there any meaning in our dying andis there a hope for a future after death? This is sometimes
referred to as anticipating meaning. I have often experienced in Western hospitals and hospices that for patientswith a religious background the hope in eternal life andthe hope of reunion with their loved ones became a powerful source of emotional strength during the last days of
their lives.
Some patients never thought about life after death during their healthy days. But they became intensely concerned about it when facing death. Some psychologists
claim that self-preservation is the strongest human instinct. Therefore, it is quite natural that a person whose
whole existence is threatened starts to think whether
death means extinction and the end of everything orwhether there may be a future life and a hope for reunion.

Keio J Med 2009; 58 (2):110－119

Families and caregivers should not impose their viewson life after death but they should listen carefully to thepatient and be sympathetic dialogue partners as the patient is struggling with the question of meaning and hopefor the future. For some patients it may be helpful tolearn about what various people, philosophies and religions have thought about this issue.
When we look back into history, we find numerous examples of people who faced extreme suffering or who
faced death approaching at an early age and who answered this crisis with extremely heightened creativity.
For me two of the most impressive examples are Mozart
and Schubert. Mozart died at the age of 35; Schubertdied before completing his 32nd year. Both were awarethat their time was extremely limited. They discovered
the preciousness of time and, during this limited time,
lived extremely creative lives. They created some of thegreatest music in the history of mankind.
Guilt feelings
The need to be forgiven or to forgive, the need for reconciliation arises from the experience of guilt feelings.
When patients review their lives, they often will remember persons against whom they have failed. Frequently, these persons will be members of their own
family. Patients may also remember times when they
have not lived up to their own ideals or moral standards.
Smokers may feel guilty that they are themselves responsible for their lung cancer. Heavy drinkers may blame
their uncontrolled consumption of alcohol as the causeof their incurable disease. No one is perfect. Therefore,various types of guilt feelings are quite common among
dying patients. Guilt feelings do not only come from acts
they have committed but may also originate from acts ofomission; in other words, a person may feel guilty not
for an evil deed he did but for some good deeds that hefailed to do. Sins of omission may be the fact that he did
not help a person who needed his help. Christians are allfamiliar with the norm for judgment in the Last Judgment described by Jesus in Mt. 25, 31-46. Those who do
not enter heaven are not condemned for some evil they
have committed but for the good they failed to do, for
not helping those in need who needed their help. Guilt
feelings are frequent sources of spiritual pain.
Several American surveys indicated that people whose
image of God was that of a loving and forgiving God experienced a more peaceful death. For religious and nonreligious patients alike the experience of being forgivenby their fellow human beings whom they had hurt, contributed greatly to a peaceful death. For some patients,
the main task may not be to seek forgiveness but to forgive those who have hurt them and whom they may haverefused so far to forgive.
Medical staff workers have often witnessed that a pa-

115tient’s unnecessary prolongation of the dying process
was due to unresolved guilt or to bitterness or anger towards some family members. It seems that these deepseated negative feelings trap a patient in his final agony
and do not let him go peacefully into death. Refusal toforgive enslaves us to a painful negative past.
So far we have considered forgiveness primarily as aliberating and healing process for the dying patient. Forgiveness is also important for the surviving family members. When old wounds have been healed through forgiveness and reconciliation, the family members can enjoy more positive memories of the deceased person.
These memories can become a significant help in thegrieving process. On the other hand, if no reconciliation
took place, family members will be burdened with negative memories and with regrets. This leads to a more
complicated and painful grief process.
Loneliness and isolation
During man’s whole life, the desire for communicationis one of the basic human needs. This is even more true
during the final stage of life. When medical science cannot heal a person any more, the patient’s interest naturally turns from medicine to persons, from technology tocommunication. Loneliness and isolation are frequentsources of spiritual pain.
We often wear masks because we do not want to show
our true face. There is usually a gap between the person
we want to be and the person we really are. During thefirst stage of the dying process, medical professionals often hide behind masks of medical technique or behindthe mask of vague phrases that conceal the truth. During
the final stage of the dying process, patients usually takeoff their masks and reveal their true selves. Medical professionals and family members should do the same. This
offers a new possibility of profound communication. If
both sides open their hearts and truly listen to each other,
the dying patient can experience a new – so far not experienced – communication. At the same time, caregivers
should not see this as a one way communication. They
also can learn and receive something new – something
new about life and death.
During the past twenty years I have organized annual
hospice tours for Japanese medical doctors and nurses. I
had the opportunity to visit over two hundred hospices ina dozen different countries. In numerous hospices, I haveadmired the ways in which hospice patients supported
each other in efforts to overcome loneliness and isolation. Many hospice patients come together regularly toshare creative activities like painting, writing, making
music, doing pottery or listening to each other’s life stories. Such creative communication is a major help inavoiding or overcoming loneliness. It also can halt theprocess of social or cultural death that so often precedes

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physical death.
Hopelessness as spiritual pain
One of the basic spiritual needs of the human heart is
his need for hope. Hope gives man the joy of living anda positive outlook towards the future. Hope is the sourceof great spiritual energy in man. Although the object ofhope lies in the future, hope itself is not in the future but
is a sustaining energy here and now. The opposite ofhope is despair. Hopelessness is a frequent source of
spiritual pain. Despair is an extreme mental suffering
here and now.
The greatest threat to hope comes to man when he issuffering from an incurable disease. How can man maintain hope if he is facing death? Usually hope is seen inthis situation as hope for a cure. However, for many patients the object of hope changes. In other words, hopeneeds not to be seen only in terms of a cure.
In many patients, I have observed several stages ofhope. Typical stages are as follows:
1) The first stage of hope is the hope that nothing isreally wrong, that it is not a serious illness.
2) When it becomes clear that he is suffering from a
serious illness, the patient will often move to the second
stage, namely the hope that there will be a cure. Often,
patients at this stage will hope for the discovery of a new
drug or new treatment. For some patients, this hope willcontinue till the end.
3) Patients who have accepted the reality of their incurable cancer will frequently hope for more time. Somemay hope to live till the wedding of a child or the birthof a grandchild. Others may hope to have time to finish aproject or to travel once more to a favorite city.
4) When time runs out, most patients will hope to bepain-free till the end and not to be abandoned. The hopethat somebody will be with them at the hour of death isan extremely important hope. Caregivers and family
members should repeatedly tell the patient that they will
not abandon him, that they will be at his side till the end.
This helps to overcome the fear of loneliness and, at thesame time, strengthens the hope of being with somebody
at the hour of death. Several hospice doctors have told
me that, in their first meeting with a new patient, they always tell them: “Today I will make you two promises:
first that you will be pain-free and second that you will
not be alone till the end.”
5) Some patients move to the fifth stage of hope, ahope for eternal life and a hope for a reunion with loved
ones. In German and American hospitals and hospices, I
have seen numerous patients for whom, during the final
hours, this hope became the most important spiritualsupport and consolation.
Caregivers and family members should not try to force
this fifth type of hope on patients who do not embrace it

Deeken A: Considering Spiritual Pain of Dying Patientsthemselves. On the other hand, we should always beaware that, for some patients, this could be the most important hope. Our expressing unrealistic hope about recovery may offend such patients. It would not become asource of encouragement but of spiritual pain. I havewitnessed cases where a patient had reached this fifth
stage of hope and the family members talked only about
stage two. This created a painful gap in their communication.
I have used the five-stage model above. Several patients whom I have accompanied during their dying process went through these stages consequently. But theprocess does not have to be in this sequence. Some patients may consider as their most important hope to remain pain-free or not to be left alone. Some may alreadyat a rather early stage find their greatest spiritual support
in hope towards an eternal future and a hope of a reunionwith their previously deceased spouses. Each dying person is unique. But as caregivers, family members orfriends, it can be helpful to know that the object of hope
can change and that there can be stages of hope in the
dying process.
I have often been asked after a lecture: “Is it really all
right to tell a patient the truth about his incurable cancer,
is it all right to deprive him of hope?” As it should be evident from the above description, truth-telling about an
incurable cancer is not the same as depriving a patient ofhope. On the contrary, if we do not tell a patient thetruth, we leave him on the first stage of hope and deprive
him of growing through the other stages of hope. In thissituation, the patient clings desperately to an empty hopewhich will often, at a later time, turn into the opposite,namely despair. Thus, true information can be a valuable
way of assisting a patient on his spiritual journey and of
helping him to fulfill an important spiritual need, theneed for hope in all its different forms.
Method of Reducing the Spiritual Pain ofTerminal Patients
I shall present three ways of preventing or reducing
excessive fear of death and of lowering the various typesof spiritual pain of terminal patients: 1. Death education;
2. Presence at the bedside; 3. Humor as an expression oflove.
Death education as a way of reducing spiritual pain
Since death has been treated as a taboo in recent times,
many people have, throughout their life time, avoided
any thinking about dying and death. When told that they
suffer from an incurable disease, they are not prepared toconfront their own dying and death. It is difficult to die agood death without any preparation. A lack of death education seems to be a major cause of spiritual pain of ter-

Keio J Med 2009; 58 (2):110－119

minal patients.
Throughout our life, we are facing various difficult
tasks. Education prepares us to face these tasks in a mature way. The most difficult and painful task a humanbeing has to confront is the process of dying and death
itself. Whereas in other new situations we can always
ask for the advice and assistance of other people whothemselves had similar experiences, in the final hour oflife, we are completely alone. No experienced guide cantell us what it is really like to die. Some doctors may pretend that they know what dying is, but their knowledge
is technical and academic; nobody has a personal experience of the painful and lonely hours when the warm human life is gradually weakening and the cold shadows ofdeath are approaching. No wonder that in the face ofdeath feelings of utter helplessness, gradual separationfrom all possessions and from the people we love, as
well as the uncertainty of the future after death arousefear and anxiety in a dying patient. But this fear of death
is by no means restricted to the final stage of life. Man isa thinking being, and throughout our life we cannot ignore the fact that one day we will have to die. As the philosopher Heidegger has put it, man is a “being unto
death.”
From the above reflections, it should be evident that all
humans need death education in order to confront in amature way their own deaths. It would be irresponsible
to neglect the preparation for death and, from the side ofsociety, it would be cruel to have a terminal patient confront death without any preparation. For all other important tasks of life, society offers special education andpreparation to people. It is, indeed, one of the mostamazing facts that our highly developed educational system should have so completely ignored the task of educating and preparing people for life’s most difficult days.
Death education should be offered at different stagesof the life cycle. Mothers should use “teachable moments” offering information when children ask questions
about dying and death. High schools and universities
should offer systematic courses of death education. I
know from my teaching experiences that university students show a great interest in dying and death. For thirty
years, I have been teaching death education at Sophia
University in Tokyo. An average of eight hundred students selected this course every year. Death education
courses should be made available by culture centers orcommunity colleges on a yearly basis. Numerous adults
like to learn about death when losing a loved one orwhen facing cancer themselves. Since death education isat the same time life education, I recommend the studyof death education for people who are confronted with amidlife crisis and for people who are facing retirement.

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Presence at the bedside and nonverbal communication
as ways of reducing spiritual pain
The second method of reducing spiritual pain is personal presence at the bedside of a patient. Feeling thepresence of family members, friends or volunteers relieves the patient from the pain of isolation and loneliness. Active listening frees the patient from the fear of
being abandoned.
Nonverbal communication may sometimes be expressed by a gentle touch. A caring touch often decreases
the patient’s anxiety and feelings of loneliness. If a patient offers a hand, handholding can enhance self-esteem
and offer a sense of security and acceptance. Such nonverbal communication greatly reduces the spiritual painof a dying patient.
Humor as a method of reducing spiritual pain
Visiting over two hundred hospices in a dozen different countries, I was repeatedly surprised to hear how
highly humor is valued as an important element in thecare for dying hospice patients. Many hospice doctors
value humor as a way of lowering spiritual pain of patients.
One of the common misunderstandings about humor isthat a sense of humor is a natural gift, the attribute of aborn optimist or the reaction of a person favored by goodluck. Often the opposite is true. Humor is not necessarily
the expression of a cheerful character or of a natural optimist. A mature sense of humor frequently emerges fromthe experience of pain and suffering. Humor is not to beequated with cheap jokes or superficial merrymaking.
Rather, a true sense of humor often reveals itself in timesof suffering. If a person is going through a painful experience and can still smile in spite of everything, he has agenuine sense of humor.
Humor in its deepest sense is an expression of love.
When we want to show love to a person, we first have to
ask what this person expects and likes. Most people, especially the elderly, like a relaxed and warm atmospherein daily life. Through smiles and laughter, we can createa pleasant atmosphere for our fellow humans. Every human being experiences hours of pain, darkness and loneliness, and is sometimes overwhelmed by the burdens oflife. Humor is the magic that can change a tense atmosphere into a relaxed and cheerful one. Humor can thus
become a healing balm, a medicine for the whole person.
Smiles and laughter are the universal language of love
understood by people throughout the world. Humor blossoms naturally in a heart that is filled with sympathy andlove for other persons. Developing a sense of humor may
be seen as an important aspect in the search for spirituality during the latter years of life. A warm smile and asense of humor may sometimes be the most important

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expressions of love.
For many or at least for some patients, a sense of humor can contribute greatly to make the final stage of life
more meaningful, serene, and human. Of course, in apluralistic society, dying patients reflect many values andhave different needs. We in the caregiving professions
are in constant danger of trying to generalize and categorize a patient, fitting every patient into the same mold,and pretending that we know best what every patientneeds. A pluralistic approach refrains from forcing a generalized treatment upon the dying patient and attempts tobe open to the individual psychological needs of eachpatient, encouraging him to live his final period of life ina personal manner and to die his own personal death inaccordance with his own ideas and ideals. Not every patient has to go through Kübler-Ross’ five stages of dying,and not every patient may find help and consolation in
the prospect of immortality. But if a certain medicine is
not therapeutic for all patients, there should be no reason
to withhold it from those whose psychosomatic health
may be improved by it.
It is within this framework of an individualized, pluralistic approach to the dying that humor and laughter may
be a much-neglected yet important help to improve ourquality of life. Our general culture tends to overemphasize the seriousness of life while grossly neglecting theimportance of humor and laughter. There is no lack ofsuperficial merrymaking, but that is frequently an attempt to escape from the boredom of the serious business of life. The shallowness of this posture becomes
ever more evident as man’s life approaches its end.
Humor is an expression and reflection of the infinite
richness of joyful human life itself; it is a creative forceof so many varieties that like life itself it eludes definition. Etymologically, the English word “humor” comesfrom the Latin “humor” (plural: humores). Medieval
doctors referred to the “fluids” in the human body as“humores” that give life to man. For them, humores were
not accidental but vital essences, the “juice and sap oflife” whose flow gives vitality to a person and which, asa creative force, is constantly recharging human life.
Norman Cousins’ “Anatomy of an Illness”3 advocateslaughter as an important medical tool, as a powerfulweapon in the war against disease. Cousins claims thatthrough administering massive doses of laughter to himself he produced positive emotions and changes in his
body chemistry that significantly contributed to his physical recovery. Ten minutes of genuine belly laughter had
an anesthetic effect and gave him more than two hoursof pain-free sleep. This laughter theory is based on scientific data showing that laughter enhances respirationand helps oxidize the blood.
Humor and laughter could become important answers
or partial solutions to the following problems:

Deeken A: Considering Spiritual Pain of Dying Patients

1) Death-fear – Fear-reducing humor
Fear of death is a common phenomenon among people
approaching death. To a certain degree it is a healthy defense mechanism. However, too many people are burdened with excessive depressing fears. For them, ahealthy dose of humor may be helpful as a fear-releasing
therapy that will reduce their anxieties to a normal level.
2) Stress and tension – Humor and laughter as releaseof tension
Going through life-threatening illnesses, patients usually suffer from great stress and multiple tensions. To acertain degree, these emotions seem to be healthy coping
mechanisms. However, constant stress and tension overan extended period of time can have a debilitating effecton the already weakened patient. Humor, laughter andjoking can fulfill a tension-relieving function.
3) Aggression, anger and hostility – Humor and laughter as a cathartic reduction in the intensity of the aggressive feelings
Kübler-Ross describes anger as the second in the fivestage process of dying. Although I do not agree with theview that all patients go through a stage of anger, nevertheless, feelings of aggression, anger and hostility arequite frequent among people with a life-threatening disease. Encouraging the patient to develop a sense of humor and laughter could be for some a significant help in
reducing hostile feelings.
4) Tendency to become passive – Humor and laughteras stimuli to activity and human growth
There is a natural tendency for the patient approaching
death to become passive and to let the process of dying
just happen. Our task in caregiving is to encourage thepatient to search for a proper balance between the unavoidable passive posture and a personal acceptance ofan active control over the last period of life. Humor andlaughter can stimulate the active and creative forces ofman. It is significant that Freud considered humor as thehallmark of maturity.
5) Isolation and loneliness of dying patients – Community-forming power of humor and laughter
Growing isolation and loneliness are for many patientsthe most painful experiences of the dying process. Not
only do relatives generally visit less frequently as the patient approaches his final hours, but also several surveys
indicate that even doctors and nurses decrease the number of visits when there is no hope of recovery. Thus,
many patients are deprived of human companionshipprecisely at the time when they most need it.
The loneliness of the dying patient is a complex andmultifaceted problem. Many patients may not even careabout humor at this stage of life. However, numerous patients at this stage do appreciate humor and laughter asmeans of human communication and are greatly helpedby them. Laughing together creates a feeling of solidarity
and community. It may not be a remedy for all patients,

Keio J Med 2009; 58 (2):110－119

but for some dying persons, humor and laughter may be
important ways of counteracting and overcoming thegrowing isolation and loneliness.
6) “Burned-out” cases among doctors and nurses dealing with dying patients – Humor and laughter as preventive medicine and therapy for the caregivers
Constant work with the dying may become a heavy
emotional strain; the number of “burned-out” cases in
the caregiving professions is relatively high. Evidently
the people giving constant help to the dying need help
themselves. Developing a sense of humor and laughter119

may help them lessen the tension and create a more relaxed atmosphere.
References
1. Doka K, Morgan J: Death and Spirituality. New York, Baywood
Publishing Co., 1993; 11－17
2. Wald FS: In Search of the Spiritual Component of Hospice Care.
In: Wald FS, ed, In Search of the Spiritual Component of Hospice
Care, New Haven, Yale, 1986; 25－33
3. Cousins N: Anatomy of an Illness as Perceived by the Patient.
New York, WW Norton & Co., 1979