Ethical Decision-Making and Grief
Michael McCabe
Issue 8, November 2002
The word grief comes from a Latin word 'gravare' which means deep sorrow. Grief is a deep sense of loss, which is part of the human condition. For both the healthcare professional and the ordinary person, ethical decisions often need to be made in a grief-filled context.
A sound clinical model for ethical decision-making will always seek to take full account of both the external and internal world of the person facing impending loss. That person may be terminally ill, or may be close to someone who is dying.
Decisions at the end of life concerning the withholding or withdrawal of treatment for a particular patient generally follow thoughtful and well-considered processes, in which all perspectives are thoroughly evaluated. Despite this very respectful and due process being followed, I have frequently observed the process unravel at precisely the point where it seemed a consensus-decision was imminent. For the casual observer there is little to indicate why such a valuable process should break down.
The difficult decisions that engage us most fully are those in which we are personally involved. They tend to be those situations in which our own stories and journeys are caught up, and challenged by, the outcome of the specific issue at hand. At these times we are very vulnerable, and inevitably bring our individual hopes, fears and personal histories into the multifaceted texture of the ethical decision-making process.
Very often this experience is one of being thrust into a situation with little prior warning or preparation.
Dealing with death is part of being human, and cannot ultimately be avoided. Grieving involves deep pain, but it is a natural consequence of separation and the healing process, which should ordinarily be manageable and limited in time. How grief interacts with ethical decision-making can depend upon when the grief process begins, and what stage has been reached at the time that substantive decisions are being made about treatment of the dying person (see page... for an outline on the stages of grief). How the grieving process unfolds can also reflect the person's prior experience of loss and the coping techniques they have adopted in the past.
My experience and reflection on many years of involvement with the dying and their loved ones leads me to believe that in the time of transition found at the end of life, there is often a delicate interplay between ethical decision-making and two particular types of grief, anticipatory grief and unresolved grief. This helps to explain why the process of ethical-decision making can be so complex and why it can unravel at times.
Anticipatory grief is a grieving process that occurs when a patient or family is expecting a death, or in some cases when a family is faced with a condition such as Alzheimer's Disease. Anticipatory grief is beneficial in that it can give people more time to adjust to change, to get used to the reality of the impending loss and to complete unfinished business with the dying person. It is a psychological mechanism that prevents us from being overwhelmed, as we would be when death is unexpected.
Because anticipatory grief has similar stages as those experienced after a death, such as denial, guilt, anger, and depression, it is essential for those involved in ethical decision-making at the end of life to be aware that the symptoms of particular stages may manifest themselves in ways which can suddenly derail an apparently sound ethical process. Recognition of where the person is in the grieving process, even though death has not yet occurred, may mean that the ethical discussion has to be sidelined for a short time in order to provide specific support to the grieving person or persons. This "time-out" will ultimately help to ensure both a good ethical decision-making process and a good grieving process for all those involved.
While grief is a natural and inevitable part of life, and while all grief removes a sense of the familiar and the predictable, unresolved grief can be defined as grief that impacts adversely on the individual or community precisely because the process of grieving is incomplete or has been unsuccessful. The grieving process is learned. To the degree that the individual has learned to cope with loss and separation the more he or she is better equipped and better able to meet the various challenges and possibilities in life. Unresolved grief acts as a very powerful barrier to consensus building particularly when the discussion occurs in times of transition such as at the beginning and end of life. These times of transition are powerful because they inevitably throw into sharp relief so much of the individual and communal story.
In a culture which does not favour the free and open expression of emotion, coping with grief by avoidance may be a strategy a person has used in the past to deal with loss. Loss needs to be confronted, understood and accepted as a necessary personal process to allow resolution, and avoidance or escape from grief can increase the probability of unresolved grief impacting adversely on future loss situations. In some cases an unresolved but relatively minor loss may have a substantial impact at a later date on a major and life-altering loss, as a major new loss often brings up echoes of past losses. If a family member still has intense unresolved grief from a previous loss, it can complicate involvement in the ethical decision-making processes associated with the ending of the life of another person who is close to them.
Frequently all that is required to enable all parties to move beyond the impasse resulting from unresolved grief is the appropriate telling of the story of the previous loss. This can be particularly effective if it is done in a way which elicits detail, and which draws out the relationships involved. It may be necessary to provide a way in which the story of the past loss can be honoured in its own right without submerging it in the impending loss. Anger can be a stumbling block to experiencing emotions around loss and the appropriate expression of that anger to a safe person, such as a counselor, may also be a deeply liberating experience.
The process of ethical decision making is made even more complex by the fact that the routine elements of the human narrative or life-story are not easily accessible to reflection. Values are deeply embedded and built up over a process of a lifetime, and through positive and negative experiences. They may be not only inaccessible to reflection but also rarely acknowledged as the implicit and powerful shaper of who we are and where we are at in any particular moment. This is equally true for the caregiver and for the cared-for. Discovering these links can be elusive, and the assistance needed is often beyond the skills and training of either ethicist or medical specialist. A skilled counsellor may be needed to accompany the person concerned as they deal with the new situation of loss and the complexities of the decisions required.
The experience of grief is a normal part of human life and can never be ignored as we deal with ethical decisions at the end of life. While some people attempt to work through grief alone, and while there are undoubtedly times when solitude can assist the process, ultimately the gift of community is required for healing and is, in fact, a sign of healing being achieved. For those facing new loss, and already in a process of anticipatory grief or blocked in their response by unresolved grief, the first experience of a healing community may well be found in the medical, ethical and therapeutic professionals who recognize their needs and respond to them.
The Stages of Grief
In her germinal work, Elisabeth Kubler-Ross identified five 'stages of grief' which are key phases in a normal grief cycle - denial, anger, bargaining, depression, and acceptance. These phases are not simply a 'step one to step five process'. The reality of grief is more complex, reflecting the fact that every individual grieves differently. Nevertheless, the strength of Kubler-Ross's analysis lies in the identification of distinct patterns in the process of grief, with each phase having its own wisdom and insight. While the phases can be seen as part of the normal reaction to separating from someone or something that has been lost, they are also ultimately stages in the movement towards wellness and healing. These stages can be experienced not only by those who have been bereaved, but also by those who have learned that they are terminally ill and must come to terms with the impending loss of their life.
Denial
This is usually the initial response to loss - a sense or feeling of isolation, shock, and numbness, coupled with disbelief about what has happened. Such feelings occur because we have, to a greater or lesser degree, gone from a position of independence and freedom to one of isolation and dependence. Denial can also be a natural protection against being totally overwhelmed by the full impact of loss. It allows us to first block out potentially devastating information and then to slowly let it filter through in a manner we can handle.
Anger
In any grief cycle there will be a period of anger, which may be directed at the system, the person who has died, other people, God, or the situation causing the grief. This anger is the result of an individual's life pattern changing - what was certain, sure, steadfast, is now uncertain, vague, and changed forever. A terminally ill person may vent such feelings of anger at the caregiver, or at another person who is perceived to be strong enough to handle it. When we are the targets of this anger it is important not to take it personally, as the expression of anger during grief is beneficial and it should not be repressed. However the person targeted may need support if they are to act in appropriate ways which promote both their own well-being and that of the grieving person. Anger is often intermingled with guilt about what was done and not done. Feelings of guilt, as with feelings of anger, require gentle and honest addressing in order to leave them behind and journey forward.
Bargaining
Often in grief experienced by terminally ill people there is a period of bargaining as the person attempts to change the inevitable. The bargaining can be with God: 'If you ensure that I live I will do x, y and z for you/I will devote my life to your service/build a shrine etc'. When the loss is incurred as the result of a marriage break-up, the bargaining can be with the partner: 'If I stop drinking will you take me back?' 'I promise not to hit you again if you allow me to stay'. While bargaining is a natural stage in the process of coming to terms with what is happening, we need to recognise that it can be a shield or mask preventing us from facing our reality.
Depression
Isolation and hopelessness can overwhelm the person as the reality of loss or impending death sinks in deeply. Each person's experience of depression will be different, but sadness, loss of appetite, withdrawal, insomnia and inability to enjoy anything are common signs. The depression phase of the grief cycle is essentially a transition to acceptance of loss, a period in which the person gives up all the defences previously employed to keep the loss at a distance. Sometimes the person suffering from depression is told by well-meaning others to 'snap out of it!' or 'pull yourself together!' The path out of depression is not that easily trod as it involves the individual letting go and adjusting to the new situation. If the person does not appear to be moving through depression, medical help may be needed. It is also a stage that a person may return to more than once over a period of time, each time gaining a greater level of acceptance of the loss involved.
Acceptance
In this final stage of grief there is a sense of peace as the person accepts the situation, and the reality that it cannot be changed. Acceptance is not the same as resignation, which occurs when a person appears to accept the situation while in reality they deny its truth. It is also possible that someone may simply give up on working through the various feelings associated with grief. This working through takes time, as the normal grief cycle for a bereaved person who has lost someone close can take up to two years or longer. Acceptance is characterized by inner peace and new insights, together with a willingness on the part of a terminally ill person to prepare for death, or in the case of a bereaved person, to move back into life.
Conclusion
The terminally ill and the bereaved will move among these phases over a period of time, sometimes returning to a previous stage to complete unfinished business. If this process is able to take its own pace and proceeds in a healthy and holistic way it will be beneficial for both the person concerned and those who love them.
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Rev Michael McCabe, PhD
Director
The Nathaniel Centre
©
2002