Doreen Hocking           

It is like the story told of Forain, the French painter, who became ill and was examined by half a dozen specialists.  The heart specialist pronounced his heart in good shape, the lung specialist declared his lungs to be fine...and soon until Forain broke in: 'Then I am dying in perfect health!'
                             Arnold Hutschnecker - The Will to Live

Introduction  I have cared for patients who are terminally ill in hospital and for eight years as a community nurse.  Commencing work as a Macmillan nurse two years ago, I found many problems with denial in terminal care situations.  For instance, the doctor talked frankly to one of my patients about her cancer.  She completely failed to take it in and claimed that she had not been told.
  Denial raises complex, practical difficulties for patients and their families.  It may also influence the ability of professionals to provide holistic care.  It dawned on me that part of the problem probably is within myself, as terminal care forces me to confront situations with which I am not always comfortable.
  I was stimulated by a nursing course, titled 'Continuing care for the dying patient and his family', to explore denial in two ways.  First, I reviewed what others have written about these knotty problems.  Then I questioned 75 nurses who work with terminal care patients about their views of denial.
 
The many facets of denial  The possibility of death confronts us with our own mortality and the pain of anticipating loss, change, separation from loved ones, uncertainties and fears.  People I work with may perceive serious illness as a challenge, a threat, a harm, or a loss or may reject it altogether through denial.

Not recognizing denial keeps us stuck in the same old pains and fears, tribulations and loss.  Denial is pushing away the present.

                                                                                     Steven Levine

We live in a death-denying society.  Denial is the first reaction of most patients when they hear that they have terminal illness.  At first this may be helpful, allowing a positive attitude and holding on to the illusion of an open ended future.  Persistent denial blocks patients and their families from processing the feelings associated with the later stages ofgrief.  These include bargaining, isolation, depression, anger, guilt and finally acceptance.  Denial must be overcome if people are to arrive at acceptance.
  Patients may challenge the diagnosis or the high probability of a fatal outcome.  For instance, I hear some using euphemisms like 'I have hot spots on my liver.  It's not cancer.'  Others displace the cause of their feeling ill onto side effects of their medications.  Many such emotional defences may come into play.
  Persistent denial creates a range of difficulties.  Not acknowledging an illness can lead a patient to miss needed treatments, symptom control and support.  In extreme cases, denial can be positively dangerous.  A woman I nursed ignored a breast lesion until it was beyond definitive treatment and then continued to deny the need for palliative care.
  Professionals may sometimes collude with the denial of patients and their families.  This may contribute further to difficulties in dealing with later stages of grief.
 
The questionnaire  to explore these complex issues I presented questionnaires to experienced nurses who work with patients demonstrating denial.  They were completed by 75 nurses, of whom 57 work with terminal care patients full-timeand 19 as part of their case load.

  The largest group (43%) thought denial in terminal care was bad but many (32%) thought it was a good thing.
  In replies received from the questionnaire, collusion by professionals in denial was often blamed on lack of time to deal with it.  Other reasons included the wish to preserve hope, fears of causing distress,
anxieties about whether nurses could handle the patients' and families' distress, and concerns of nurses about the ability to cope with their own feelings.
  Some of the psychological experiences and behaviours which nurses associated with denial are listed in Tables 1 and 2.
  Most agreed that the bereavement process is detrimentally influenced when the patient or relatives have not come to terms with the diagnosis.  They were divided on whether denial should ever be confronted and broken down.
 
  Ways to deal with denial  There is no easy way to break bad news.  We must do our best to choose a time when patients and families are ready to receive it.  If possible, this should be done honestly and gently by a person who knows them.  Breaking bad news abruptly can actually provoke responses of denial.
  Often it is a dilemma for carers to know when to speak and when to be silent.  We must respect the coping mechanisms patients and their families use.  It is important when challenging denial to do it gently.  Open questions, reflecting, paraphrasing and summarising can facilitate expression and exploration of feelings.  We should allow our patients to be open to the situation and not inflict on them our expectations for their ability to cope or our preference for timing or pacing the work of grieving.  It may be hurtful to break denial when the patient is not ready.
  When there are open communications, patients will often face reality and come out of denial in their own time.  I nursed 'John', who had terminal cancer, for three months.  Despite regular visits in which I offered every opportunity and encouragement to speak about his situation, not once did he talk about dying.  John always spoke about the future positively, stating what he planned to do in several years' time.  I was very uncomfortable but felt it was not helpful because of his reserved personality to break into John's denial.  On one of my visits I was surprised when John spontaneously spoke openly about the fact that he was about to die.  All his fears and concerns came tumbling out.  He was able to make plans for his funeral and to say goodbye to family and friends.  Two days later John died.
  When  relatives are denying a patient the knowledge of what s/he is facing, it is important to spend time with them, to acknowledge their emotional pain and to discover what everyone feels and what they may be worriedabout.  Sometimes tremendous energy is wastefully bound up in maintaining false hope and keeping denial alive.  When the denial is relinquished ther is a palpable improvement in everyone's feelings.
  Conspiracies of silence develop when family and professionals avoid communications lest they upset the patient.  I have seen these lead to distancing, isolation and abandonment, ending with mutually unresolved pain and discomfort and devaluation of personhood.  In some cases professionals actually tend to reward patients for maintaining the denial phase.  This can protect staff from becoming involved.  The collusion may be as simple as evading answering questions directly or reminding patients they are being cared for by the best medical staff.  Some of the reasons given by nurses for collusion are listed in Table 3.
 

Table 1.  Psychological Experiences in Denial of Death
 
               Non-acceptance of diagnosis
               Non-acceptance of prognosis
               Fear of human contact
               Inability to plan ahead
               Distancing/Isolation
               Resentment
               Anger/Aggression
               Withdrawal
               Rationalisation
               Fear
               Euphoria
               Disbelief
               Frustration


Table 2.  Behaviours Associated with Denial of Death
 
               Failure to seek medical attention
               Refusal of symptom control
               Refusal of support
               Collusion with family and professionals
               Blocking out reality
               Protecting loved ones
               Irritability with family
               Inability to discuss illness
               Changing subjects of discussion
               Diverting behaviours
               No eye contact


Table 3.  Reasons given by nurses for collusion
                                                related to 
        Patient and Family                                  Professionals            
        Preserving hope                                         Easier to collude
        Family's request                                        Feeling of failure
        Not wanting to upset patient                       Lack of support from
                                                                             colleagues
        Fear of breaking communications               Lack of time and space
        Fear of patients' response                          Afraid of blame
        Lack of experience and training                  Feeling responsible
        Not brave enough to test denial
        It's okay to collude
        Self protection
        Inability to cope with own emotional pain


Patients may be damaged by false reassurance, becoming overly optimistic and diverted from discussion painful topics.  Such tactics may deny them the chance to share thoughts and feelings at a most important time in their lives and in their relationships with their families.

...we only fail if we are trying to keep people from being dead.  Then we will inevitably bail, since life has a 100 percent mortality rate...

                                                              Bernie Siegel

  Such tactics may deny them the chance to share thoughts and feelings at a most important time in their lives and in their relationships with their families.

 Dealing with caregivers' denial  I know there were instances when I was not ready to become aware of my own pain in difficult situations.  To show our own emotions as caregivers used to be taboo. Acknowledging the strength of my own feelings somehow felt like I was admitting failure.  I realise now that if I am going to be able to empathise with my patients I must acknowledge my own feelings instead of denying them.  It is especially important to be conscious of my own mortality and of my feelings about death.  I cannot expect patients to be open to their feelings when I am not open to my own.  When I could acknowledge my own I could deal better with patients' feelings.

Staff need a supportive network to help deal with their own anxieties, hurts and resonations with patients' pain and grief.  It is important to create a space for oneself for this.  I have the priviledge to belong to a supportive team but since attending the course on care for the dying I sought supervision privately.  This feels important for my personal support and development and for improvement in my counselling skills.
  Stephen Levine points out:
 

  ...the first stage of healing into grief...is acceptance...The fear which has always guarded these heavy emotions from exploration now becomes an object of examination and acts as a guide into new territory.  Fear becomes an ally which whispers that we are coming to our edge, to unplumbed depths, to the space in which all growth occurs.  We discover that we have never learned how to allow ourselves to be overwhelmed, how to let go of control, how to go beyond the pain we have become accustomed to...

In summary  I hope patients and families will come to acceptance of their illness but I acknowledge I must trust each patient's ability to adapt to the situation in their own time.  My feelings will, I am sure, at times resonate with those of the patients and their families.  I accept this as part of bereavement counselling.  I am aware of the importance of maintaining open communications. I hope in this way to be able to help patients to a dignified and expressive end to their lives.
 
 
Helpful References:
 
Doyle, D. Domicilliary Terminal Care, Edinburgh: Churchill Livingstone 1989
Hinton, J. Dying, London: Penguin 1972
Kubler-Ross, E. On Death and Dying, London/New York: Tavistock/Routledge 1989
Levine, S. Who Dies?, Bath: Gateway 1991
Maguire, P and Faulkner, A. Handling uncertainty, collusion and denial, Brit Med J, 15 Oct 1988
Moorer, S and Greer, S. Psychological Therapy for Patients with Cancer, Oxford: Heinemann Medical
Parkes, CM. Risk factors in bereavement, Psychiatric Ann, 26 Jun 90
Weisman, A. Coping with Cancer, New York: McGraw-Hill 1989
Weisman, AD. On Dying and Denying, New York:Behavioral 1972
 
Doreen Hocking is a Macmillan Nurse in Penzance.
 

You may quote from or reproduce these editorial clips if you include the following credits and email contact:
Copyright © Daniel J. Benor, M.D. 1992 Reprinted with permission of the author P.O. Box 76 Bellmawr, NJ 08099
www.WholisticHealingResearch.com   DB@WholisticHealingResearch.com

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