The implications of emotional pain for the dying patient & family

After many years in the closet, death has emerged as a part of our life, and over the past thirty years or so, a vast array of books, seminars and personal accounts devoted to the process of dying have been produced. Elisabeth Kübler Ross, a pioneer in the work with death and dying is a familiar name to all of you, as is her “stage theory”. While conceding that the stages of denial, anger, bargaining, depression and acceptance are applicable in work with the dying, and that “stage theory” is a valuable guide for professionals in this field, it is also necessary to note its limitations, and to take a look at the emotional implications of the dying process in a broader context.

WHAT IS DIFFERENT AND UNIQUE ABOUT ISSUES OF DEATH AND DYING?

There is no “proper” way to die.

People cope with death in a variety of ways. They move and fluctuate between stages of dying and their ability to cope with reality at any given time varies. Dying patients demonstrate a wide variety of emotions which ebb and flow as the need to face conflict and crises arises. The task then is to determine the level of stress and crisis of a patient at a given time, to respond to the emotions generated by that issue and to respond to where the patient is in his/her living/dying process. We do not make the patient respond to our idealized concept of dying, but we respond to that person’s actual unique dying experience.

Sheila Cassidy, in “The Latest Journey”, puts it this way: “The spiritual (emotional) accompaniment of the dying is a delicate task which requires that we find out where each individual patient is both emotionally and spiritually, and work with them in that “place”.

The dying person sets the pace
Crisis intervention is usually geared towards the development of insight or self-knowledge. In work with the dying, on the other hand, the emphasis is rather on process and presence. The patient sets the pace and different individuals get in touch with their illness at various points of truth. The therapist waits for these openings and recognizes that any one of these openings is equally good, as long as it is comfortable for that person. The process must be flexible and move with the dying person’s changes of needs, shifts of moods, efforts to control, detours into denial and so on. It is a process which continues until it is interrupted by death. Perhaps it would be appropriate to include at this point the term “patient-centred communication”, of which the most vital ingredient is receptive silent caring, and listening well.

Professionals give advice – pilgrims share wisdom! The greatest gift you can give another is your undivided attention!

The goals are different
The focus is on the person because time is finite. The emotional comfort of the person is paramount against too much emphasis on “death work”. The therapist needs to be able to tolerate incompleteness and lack of closure because not all persons die on psychological target and in a sense, every life is incomplete. The reality is that people die either too soon or too late and leave behind them loose threads and unfinished business.

The goal of resolving life’s problems may be an unattainable one, the goal of an “appropriate” death more realistic. This means giving the patient a choice as to how he/she wishes to manage her death, and enough space to resolve whatever is consistent with this choice.

Denial will take place
Denial is not a “stage” of dying – it surfaces now and again all through the dying process. It is only human to blot out thoughts of death and put them on a sidetrack from time to time. This explains for instance, why a dying patient could suddenly start talking about taking a trip and return just as suddenly to the reality of the present moment.

The rules are different
Transference and counter-transference may take place. Working intensively with a dying person is different from almost any other human encounter. The stark reality is that the patient will die soon, so that ethically speaking, the therapist can afford quickly to become a key significant figure in the dying person’s life. In other words, an intensity of emotional interaction is allowed which could be regarded as “unprofessional” in other counselling situations. In work with the dying a close intensive relationship between the therapist and patient can be sustaining for the patient.

The flip side of intensive involvement with a patient however is that the therapist is made vulnerable and when the patient dies the therapist is bereaved. Counter-transference needs to be carefully watched and support must be available. It is vitally important for therapists and caregivers to retain and make full use of their individual support systems such as loved ones, good friends, a congenial work situation, peer
consultants and occasional vacations from the dying scenario.

THE NEEDS OF THE DYING PATIENT

Open and honest communication
Openness with dying people is not a simple issue, and it is difficult to determine hard and fast rules about honesty and clarity. It is, however, difficult to discuss plans with family members, comfort each other and mobilises resources unless the truth is shared. Clear communication is, therefore, a necessity which patients and family members should be able to use constructively.

There is a difference of opinion on whether those who are dying should be told the whole truth, and often the point is raised that to know the truth might destroy the patient’s hope. The trend nowadays, however, is to tell patients what they want to know. Cicely Saunders, founder of the hospice movement clarified the dilemma by advocating this approach: The real question is not “what do you tell your clients?” but rather “what do you let your clients tell you?” In other words, how sensitive are we as professionals to understanding how much the client is ready and able to handle?

The freedom of choosing one’s own style of living and dying should be respected.

Communication of the truth should always be with the good of the patient in mind and to maintaining respect for the authentic wishes of the terminally ill patient.

The need to confront the unknown
The basic anxiety in death and dying issues is that death is unfamiliar and cannot be anticipated. There is fear of ceasing to be, personality disintegration or the death of one’s identity. There are a host of losses which the dying person may experience which affect not only his identity as a person but also his familiar way of life, his role inside and outside the family, his total existence. Dealing with these losses in a meaningful way calls for sensitive intensive therapeutic involvement.

Loss of control
Loss of independence
Loss of productivity
Loss of security
Loss of various types of psychological, physical and cognitive abilities
Loss of predictability & consistency
Loss of experiences
Loss of future existence
Loss of pleasure
Loss of the ability to complete plans and projects
Loss of dreams and hopes for the future
Loss of significant others
Loss of familiar environment and possessions
Loss of self and identity 3
Loss of meaning

The need to deal with powerful emotions

Dying is dealing with anxiety (deep fears)
Dying is feeling angry
Dying is feeling guilty
Dying is losing control
Dying is isolation and separation
Dying is grieving losses
Dying is feeling hopeless

NB: Hope is crucial in maintaining some sort of meaning in the dying process – hope can shift – hope to retain control, dignity and self-esteem paramount.

The need to preserve and restore family and significant relationships There is an interaction among those who are dying, family members and providers that is influenced by a combination of various factors: socio-cultural and organizational factors, the perspectives of the patients and the providers on appropriate care, and the family expectations and experiences.

Maintaining a functional equilibrium is a major task for the family unit and one, which has to be dealt with throughout the dying person’s illness.

There are coping tasks, which the family must undertake in the face of terminal illness some of which may be:

Dealing with fears and disruptive emotions.
Establishing relationships with the various caregivers involved.
Coping with the needs of the dying person.
Negotiating relationships and support systems outside the family.
NB Realigning and reassigning power, responsibilities and roles in the family systems’ emotional struggle to re-establish stability.
The successful coping family is able to achieve a balance between the needs of the patient and the needs of the family.

The family who cope well also know how to handle issues of guilt in a realistic way, and to take care of the needs of each family member.

When cancer progresses families confront four major issues:

Communicating concerns about death to the immediate family members.
Providing care and support.
Dealing with personal feelings of loss and separation.
Acquiring appropriate professional support.
There are ten major areas which cancer patients and their families have identified as important:

Acquiring accurate and current information on the disease process and treatment plan.
Accepting and readjusting to changes in body image and self-concept.
Learning to express feelings about having the disease.
Readjusting major responsibilities and goals in the face of an uncertain future.
Determining the impact which the illness will have on the financial status of the family.
Reinforcing basic life philosophy and spiritual needs.
Establishing and maintaining a sense of hope.
Developing meaningful interpersonal relationships with the family, friends and medical personnel.
Finding out where appropriate resources are located.
Recognizing myths and untruths about the disease and its proposed treatments.

THE NEEDS OF THE CAREGIVER

Work with the dying cannot be conducted as a solo operation. “No man is an island” according to John Donne. This phrase underlines the necessity for multi-disciplinary teams and teamwork. In “real life” physical, financial and emotional problems are interlocked so that it takes caregivers from a number of different disciplines to resolve them. When professionals are prepared to acknowledge each other’s differing expertise, “holistic” care can be delivered.

Caregivers are vulnerable – and need the help of co-therapists to cope and hold their balance. Sheila Cassidy in her latest book “The Loneliest Journey” put it this way: “We are all like Russian dolls – people within people, and only the wounded can heal”.
Caregivers are people who are willing to listen to ill persons and to respond to their individual experiences. Caring has nothing to do with categories; it shows the person that his/her life is valued because it recognizes the uniqueness of that person’s experience.
Caregivers are people who are able to “hold” emotions without expecting change. They know how to “stay with” and to comfort.
Caregivers are people who are able to be in the experience of pain and conflict without blocking the pain.
Caregivers are people who are able to resolve their own fears about death, dying and mortality.
Caregivers are people who are able to appreciate a wide diversity of cultural and religious beliefs and to work within the given frame of reference of the patient. Care is inseparable from understanding, and like understanding it must be in harmony.
Listening to another, we hear ourselves, caring for one another we care for ourselves as well, or we end in burnout and frustration. We are all healers of each other. We are a gift, each of us to the other, we human beings.

CARING FOR ONESELF

Be gentle with yourself.

Know your needs. You have only a limited amount of emotional energy, and you cannot be all things to all people. Avoid feeling that you have to cope.
Dealing with people facing death is difficult and emotionally draining, and evokes emotions that are painful.
I cannot manage another’s grief, I cannot remove his pain. I can only be a caring presence.
Take “time out”, becoming involved in activities which nurture you – gardening, socializing, enjoying a funny story or movie, spending a weekend away.
Keep a journal – write down thoughts, feelings, dreams, hopes and aspirations.
Prayer, deepening your relationship with God.
Continue contact with supportive friends.
Make yourself beautiful – hairdo, manicure. Look to your own health – diet, exercise and relaxation.
Accept and flow with your feelings and needs, and let go of emotions if necessary.
Don’t hesitate to acquire professional counselling if you need special support.
Above all, respect yourself and know that you are doing your very best.
Accept that you have been assigned a special role and that your unique qualities will bring “healing” and growth to others.

BIBLIOGRAPHY

Towards Death with Dignity – Sylvia Poss
Psychosocial Needs of the Dying Patient – Charles Garfield
The Loneliest Journey – Sheila Cassidy
Sharing the Darkness – Sheila Cassidy
Cancer and Faith – Reflections on Living with a Terminal Illness – J Carmody
Personal notes and summaries

By Gudrun Thiele