Originally published as JCO Early Release 10.1200/JCO.2008.19.2203 on December 1 2008

This Article Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Rights & Permissions Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Renz, M. Articles by Strasser, F. Search for Related Content PubMed PubMed Citation Articles by Renz, M. Articles by Strasser, F. Social Bookmarking                            What's this?

Between Utter Despair and Essential Hope

Monika Renz, Dieter Koeberle, Thomas Cerny, Florian Strasser

From the Sections of Psychooncology and Musictherapy, Oncological Palliative Medicine; and the Division of Oncology/Hematology, Department of Internal Medicine, Cantonal Hospital, St Gallen, Switzerland

Corresponding author: Monika Renz, PhD, MTh, Psychooncology and Musictherapy, Division Oncology/Hematology, Department Internal Medicine, Cantonal Hospital, Rorschacherstrasse 100, 9007 St Gallen, Switzerland; e-mail: monika.renz{at}kssg.ch

INTRODUCTION

"No, you know, that can't be right. I just can't accept it."

Patients and family members can express astonishing repression, known in psychology as denial.

A young university graduate in his 40s sits in a wheelchair in front of us. He was still working until a few weeks ago. Now he has come to the hospital with his brother and his parents —but not with his girlfriend—to hear his definitive diagnosis: metastatic renal cell cancer. There is no doubt. He wants to know exactly how long he is going to live. The doctors among us tell him that he has "many months," maybe as long as 2 years.¹

He interrupts the doctors’ explanation in a loud voice: "No, you know, that can't be right. I just can't accept it. That's not true." His mother, of slight build yet formidable, a strictly devout woman, repeats: "That simply can't be right. That can't happen to my son, God won't allow that. Let's go!" She gets up. Her son, the patient, asks her to sit down again.

Although we are familiar with such situations, we are struck by the vehemence of their reaction. Their sheer desperation is so total that we are speechless.

DENIAL

Denial marks the beginning of a longer process of grief and letting go of life.²

Patients tend to perceive a diagnosis of cancer as if they were in a movie. Professional experience educates: it is most often of no use to try to drag patients, or their family members, out of this movie. Psychologists and doctors conscientiously have to know that, although the diagnosis and facts may be explained more than once, even then patients often do not accept the facts.³ Patients with a cognitive escape-avoidance coping were reported to have a longer survival than other patients with localized melanoma.⁴ At some time, the patient will get over this state of shock. The time for a first psychic consolidation of reality awareness will come. Severe and prolonged denial may cause lost chances for the patient to do things that would be important, missed opportunities may occur by not adequately planning, which may hurt the patient and family members.

The young man is now grieving about all he has lost—an active and healthy life. As his psychologist, I get to know him better. Yes, he knows about his need to feel in control of the world around him: he can't endure being powerless. He admits that he is desperate. I say, "It's great that you can admit that!"

"You're praising me? There's nothing worthy of praise. I'm sick!" he violently interjects.

"What does it mean to you to be ill?"

"I'm nothing but trash. I'm worthless." The words erupt from the slightly bloated young man in the wheelchair. "But there's hope!" he continues, "...my parents are going to Lourdes (a Christian pilgrimage site in France)!"

"You mean, you're hoping for a miracle?"

"Yes, there are miracles," he says in a now quivering voice.

He no longer seems convinced of his hope —at the least, he is exhausted. I hold his hand. I am touched emotionally. Finally, I find words: "There are burdens that are simply too great, aren't there?" He nods his head and starts to cry.

UPSURGE OF EMOTIONS

As patients actually realize their situation in an upsurge of emotions, active mourning begins. Patients might be reached emotionally by just being with them, by slight physical contact, by voice, and most of all by deep empathy.⁵ That is more important at this time than is objective information, which they can take in only bit by bit. Psychological support means being present emotionally and existentially, enduring together feelings of grief, desperation, and rage and reflecting them in a sensitive process of transference and counter-transference. In such situations, patients provide very limited orientation on necessary decisions. They depend on their oncologists’ ability⁶ to provide sensitive guidance and inform them compassionately and clearly about reachable goals.⁷

ARRIVAL AT THE TRUTH OR A POWER STRUGGLE

To face the facts and to arrive at the truth are the first challenges in processes of maturation when coping with illness.⁸ Whether inner processes develop or slow down, whether an illness can eventually be accepted or not, depend on the patient's consent. The alternative is a power struggle against one's fate, sometimes to the point of complete unreasonableness. Some patients reach affirmation by way of maturation, some by inner struggle, and some just by giving in to exhaustion at the point of death. It is not a question of morale but a decision that patients make for the sake of themselves and their beloved ones. Why for one's own sake? Because accepting the truth can set the patient free—free from constant (self-) defense, obsessive restlessness, and bitter anger. The affirmation ultimately means saying yes to creation, to God, and to death, as well as to pain.⁹ This affirmation is far from fatality and resignation; it is also far from being blind to reality or being submissive. On the contrary, it sets free forces of life and vitality⁷—even in fatal illness. The awareness of a terminal condition, in other words accepting the truth, is reported to be associated with better spiritual well-being.¹⁰

As psychotherapists and doctors, we cannot fully know the personality and hidden traumas of our patients. We never know how much maturation is possible. That is one reason that phase models may help us understand our patients but can hardly be used as simple guidance tools in clinical practice. Among models that outline the process of dying is the frequently cited five-phases model from Kübler-Ross: denial, anger, bargaining, depression, and acceptance.¹¹ This model is derived from interviews with patients who were still able to speak. The five phases describe the patient's coping with terminal illness, but not what finally happens in dying. Dying is not a linear progression, not a journey from A to B, but a process of maturation and essential transformation.^4,8

The dying process can be seen from different perspectives. As described elsewhere, dying involves a change of perception. Patients undergo a more or less threatening transition to a ego-distant state beyond pain, anxiety and distress. Renz distinguishes three states in this process: pretransition, transition, and post-transition.^8,12 From the perspectives of coping with crisis and of hope, as dealt with in this article, it is a process of maturation.

STAGES OF MATURATION

Through participating observation and an analysis of hundreds of patients, the four stages of maturation (shock/denial, upsurge of emotions, transformation, letting go) were derived by Renz et al.¹³

Shock and denial are expressed by disbelief or broad rejection of a diagnosis. Patients feel as if they are in a movie or in a dream.¹⁴

An upsurge of emotions erupts as soon as awareness of reality sets in. Anger, grief, feelings of a personal emptiness, and despair break out again and again. Patients get angry; 2 minutes later they are crying; and shortly thereafter, they appear to be paralyzed and apathetic. Patients might go through this relentless change of mood in an active psychological working-over up to the point of acceptance. Patients might struggle through this emotional cycle over and over again. Then, the time may be ripe for what takes place in the next stage.

The third stage consists of nothing less than transformation. What happens is more than just being able to accept. It is a gift of grace beyond human endeavor and power. It is here where the spiritual dimension comes in, so that patients momentarily, or for a while, feel different. There is happiness and well-being in the midst of illness. In the course of the dying process, spiritual experiences of such intensity often happen more than just once. After a shorter or longer struggle, patients reach a new mental state, just as a gift of grace.⁴

There are those patients who, in a last step of maturation, arrive at the point where they can let go and let be. There is an atmosphere of serenity. The dying patient casts off earthly shackles; wrongs suffered do not hurt anymore, wounds are transfigured, and everything is in its rightful place.^8,15

This four-stage Renz model, called "the stages of maturation," provides guidance for both compassionately and professionally accompanying patients in their last trajectory. Stage 2 of the Renz model corresponds to Kübler-Ross's phases 2 through 5,^11,16 but is conceived of as a continual course back and forth in a complex process—not as a progressive development. Stages 3 and 4 of the Renz model transmit the essence of the final realities, when clinicians are over and over again deeply surprised and touched, experiencing patient's letting go.¹⁷ Clinically, very difficult-to-treat syndromes, such as intractable pain¹⁸ or dyspnea requiring sedating drugs for alleviation, often resolve lacking a clear biomedical explanation.

It is only up to patients themselves whether they enter into the process of maturation or not. Psychologists can explain the opportunities for individuation and ultimate maturation, but, above all, professional care givers like psychologists, oncologists, and nurses must respect each patient's freedom to consent or to refuse. Finally, how a patient copes with reality and illness altogether makes up the quality of his or her hope.

ON THE WAY TO ESSENTIAL HOPE

Hope or illusion? Hope and healing are words fraught with ambivalence for every member of the hospital staff responsible for patients with an incurable disease. Almost all patients hope to get well again. Two thirds of the cancer patients we cared for hoped for a miracle. Often, the patient and the psychologist—or a well-trained oncologist or nurse supervised by a psychologist—must undertake a journey together to get from illusionary to essential hope. When we witness an illusion, we perceive something that does not correspond to reality and that is a matter of inconcrete perspective, whereas a wish carries a more concrete relation to reality. The journey offers the patient a return to life as well as a detached approach to death. Maintaining hope is one of 10 key domains of the good death inventory, which was developed from a bereaved family member's perspective.¹⁹ The patient travels a long path that often begins with permission to hope,²⁰ including permission to have an illusion.

What is the meaning of hope? Asking ourselves this question, we must admit that we discern between different shades and different qualities of hope. Hope is the ultimate driving force for anyone who is suffering. But what may cancer patients hope for? The aim of hope alters in the course of a progressing disease:¹⁷ from hope to get well to hope for another good period of life; from hope to live to hope for a good death; from hope for oneself to hope beyond one's own concerns.

There is a right to hope, yes, an obligation to hope even in utter despair, unbearable stress, and illness. Hope provides us with drive in life. Without hope, we are as if already dead, lifeless. But there is no true and authentic hope without times of affliction, hopelessness, and desperation. Fundamental hope is aimless and—like the unstoppable force of spring—a vital force in itself.²¹ That force can arise even when patients are ill and bedridden.

ONE WOMAN'S STORY OF HOPE

There are only a few patients who can cope with their upsurging emotions in such a way as one patient whose narrative is reported from the viewpoint of her psychologist (M.R.). It is truly amazing how real and purified hope arises when emotions are thoroughly sat out.

Our patient, a woman in her 50s, was taken aback by her diagnosis of incurable colon cancer. "No, I didn't believe a word", she remembered months later. The physicians’ explanation did not affect her. "It was like watching a movie," she said. But at some point she finally realized the diagnosis was right, and as a manager familiar with Internet searches, she got the information she felt she needed to have. She declined chemotherapy as "too outrageous."

Today, she sits in front of me, shaking all over. "I'm shivering nonstop. I'm horrified. I'm desperate," she sighs. Knowing about her metastasis, she tells me that she is not afraid of death. She can agree to die young. "It's not dying. It's my mother I'm worried about...there's also something else. Excuse me." She is crying. She utters incoherent words, a sob, tears. She says she is usually a well-organized person, and she is afraid I will get a wrong impression of her. She gestures nervously, realizes her inner turmoil, and continues, "I've no reason to tremble, but I'm just trembling—at home too." Relaxing is only partly possible, only with her eyes open, she continues. She can never close her eyes. I gently say, "Everything's OK."

Now she looks at me as if for the first time. "You think I'm OK? But I'm disordered."

"Yes, you're disturbed by the cancer in your life. I'd probably feel the same if I were you. But you impress me with your honesty and your bearing up in this deep distress."

She casts me an enquiring glance. Her shaking ceases. "Do you have any idea what I'm so afraid of?" she asks. I answer, "What I'm now saying is difficult to grasp, but try anyway. I think that's real fear. In real fear, you don't know what you're afraid of. This fear has you in its grip."

"That's well put. Thank you." Silence.

I give her a book about primal fear and say, "Maybe this can help you understand your feelings and see how normal your reactions are."

Her comment, days later: "I've read a lot and trembled the whole night long. But then the shaking stopped. I felt peace again. I could close my eyes for a moment. And now I'm hoping again!" she tells me with a mischievous look in her eyes.

Now she comes to psychotherapeutic sessions from time to time. Her force of hope reconstitutes itself through times of desperation. She fulfils her professional role as well as possible and buys stylish clothes to keep up an attractive appearance. Of course, there are nutritional and digestive problems. She still does not want to undergo chemotherapy and appreciates that her oncologists are giving her a check-up regularly. Her disease is advancing surprisingly slowly.

One day, I meet her unexpectedly in the palliative care unit. An exacerbation of her progressive cancer with increasing bilirubin and infection has caught her off guard. Exhausted, almost depressive, she is lying on her bed, not speaking a word for hours.

It is a tightrope walk between desperation and hope. At that time, she demands to receive one single cycle of chemotherapy. I cannot do anything but to be there myself. I visited her again and again. I let myself get involved and empathically feel my own rebellion against cancer. Now she is recovering, to everyone's surprise.

Was her recovery a medical success—or was it from the force of rebellion, or from a burgeoning of hope? All things considered, there was grace. She surprises us: she is back home on her own and able to cope with her life. She goes to Kenya, sending a postcard to tell us that she is living intensely just because she is aware that her life is soon coming to an end. When she is back home, she tells about people, nature, everything pulsating with life. "And..." she hesitates, "I planted a tree there! A tree sustains life for generations. I passed on my knowledge of business and there's also something of me in that tree. I don't know what...but the tree goes on living."

To accompany our patients compassionately from shock and despair to essential hope is a most demanding task. Patients are involved in a process of maturation that does not develop in linear progression but rather as an emotional cycle in which an innermost spiritual dimension is of central and decisive significance.

AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

The author(s) indicated no potential conflicts of interest.

ACKNOWLEDGMENTS

We thank Susan Eastwood, ELS (D), for her editorial assistance.

NOTES

published online ahead of print at www.jco.org on December 1, 2008

Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.

REFERENCES

1. Helft PR: Necessary collusion: Prognostic communication with advanced cancer patients. J Clin Oncol 23:3146-3150, 2005[Free Full Text]

2. Kast V: Encounter of self and the world in mourning. Schweiz Rundsch Med Prax 82:993-995, 1993[Medline]

3. Vos MS, de Haes JC: Denial in cancer patients, an explorative review. Psychooncology 16:12-25, 2007[CrossRef][Medline]

4. Lehto US, Ojanen M, Dyba T, et al: Baseline psychosocial predictors of survival in localized melanoma. J Psychosom Res 63:9-15, 2007[CrossRef][Medline]

5. Renz M: Redemption from Imprinting: The Message and Life of Jesus for the Overcoming of Human Fear, Desire and Power Imprinting. Paderborn, Germany, Junfermann, 2008

6. Pollak KI, Arnold RM, Jeffreys AS, et al: Oncologist communication about emotion during visits with patients with advanced cancer. J Clin Oncol 25:5748-5745, 2007[Abstract/Free Full Text]

7. Turner J, Zapart S, Pedersen K, et al: Clinical practice guidelines for the psychosocial care of adults with cancer. Psychooncology 14:159-173, 2005[CrossRef][Medline]

8. Renz M: Becoming One's True Self: On Spirituality, Maturation and Dying [in German]. Paderborn, Germany, Junfermann, 2007

9. Renz M: The experience of god in suffering and dying: The way [in German]. Journal of Spirituality 46:59-74, 2007

10. Leung KK, Chiu TY, Chen CY: The influence of awareness of terminal condition on spiritual well-being in terminal cancer patients. J Pain Symptom Manage 31:449-456, 2006[CrossRef][Medline]

11. Kübler-Ross E: On Death and Dying. New York, NY, Simon & Schuster, 1969

12. Renz M: Testimonies of the Dying (ed 3) [in German]. Paderborn, Germany, Junfermann, 2005

13. Renz M, Schütt Mao M, Cerny T: Spirituality, psychotherapy and music in palliative cancer care: Research projects in psycho-oncology at an oncology center in Switzerland. Support Care Cancer 13:961-966, 2005[CrossRef][Medline]

14. Kast V: A Time to Mourn: Growing Through the Grief Process (ed 2). Einsiedeln, Switzerland, Daimon, 1993

15. Krout RE: Music therapy with imminently dying hospice patients and their families: Facilitating release near the time of death. Am J Hosp Palliat Care 20:129-134, 2003[Abstract/Free Full Text]

16. Newman L: Obituary Elisabeth Kübler-Ross. BMJ 329:627, 2004[Free Full Text]

17. Srivastava R: The art of letting go. N Engl J Med 357:3-5, 2007[Free Full Text]

18. Strasser F, Walker P, Bruera E: Palliative pain management: When both pain and suffering hurt. J Palliat Care 21:69-79, 2005[Medline]

19. Miyashita M, Morita T, Sato K, et al: Good death inventory: A measure for evaluating good death from the bereaved family member's perspective. J Pain Symptom Manage 35:486-498, 2008[CrossRef][Medline]

20. Renz M: Spiritual Experiences in Illness and Affliction [in German]. Freiburg, Germany, Herder Spectrum, 2003

21. Penson RT, Gu F, Harris S, et al: Hope. Oncologist 12:1105-1113, 2007[Abstract/Free Full Text]

Submitted July 19, 2008; accepted August 22, 2008.

CiteULike    Complore    Connotea    Del.icio.us    Digg    Facebook    Reddit    Technorati    Twitter    What's this?

This Article Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Rights & Permissions Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Renz, M. Articles by Strasser, F. Search for Related Content PubMed PubMed Citation Articles by Renz, M. Articles by Strasser, F. Social Bookmarking                            What's this?