Working with the terminally ill

Another question I recently received is this:  According to Elizabeth Kübler-Ross, what are the five stages that a terminally ill person passes through? How would you, as a counselor, work with a person going through each of these stages?





Most likely, we're all familiar with the work of Kübler-Ross and her "five stages of grief." A brief summary of her work, and what it was never meant to be, follows, and notes on ideas when working with the terminally ill.

Kübler-Ross spent the latter part of her academic career exploring other aspects of death and dying, including out-of-body experiences and methods of communicating with the deceased. Her support of the dying led her to rally behind the national hospice care organization. In her book, On Death and Dying, Kübler-Ross identified five specific stages of grief that individuals experience as they face death.

The five stages are:

Denial: A temporary defense mechanism, denial is often the earliest stage of grief and involves feelings that “this can't possibly be happening to me.”

Anger: A dying person questions why he or she is facing death. The person might look for a source of blame, or simply become angry with G!d or the world.

Bargaining: During this stage, people try to find ways to buy themselves more time. They might, for example, start bargaining with G!d or attempt to institute a healthier lifestyle.

Depression: As a dying person begins to accept fate, they may feel overwhelming depression, sadness, or hopelessness.

Acceptance: At this stage, a dying person accepts the inevitability of death, finding some peace in this acceptance. Acceptance does not, however, mean that a person wants to die or is happy about dying, and grief may linger.

Although her original intent was to offer these strategies as a way of coping for those dealing with death, Kübler-Ross’s later work extended these stages to individuals suffering any major loss, including that of health, freedom, job, marriage, or the death of a loved one. In addition, she acknowledged that while most people go through at least two of the five stages of grief, not all people experience them in the same order.

Elisabeth suggested that death be considered a normal stage of life, and offered strategies for treating patients and their families as they negotiate and adjust to these stages. She stressed the fact that her book was “not meant to be a textbook on how to manage dying patients”. It was also not “intended as a complete study of the psychology of the dying”, nor a study of grief and bereavement. It was a discussion of some key emotional reactions to the experience of the dying. While grief was a part of that experience, it was not the totality of the experience. Her “stage theory” was openly described and discussed as a heuristic device. The stages were presented merely as a set of categories artificially isolated and separately described so that she could discuss each of the experiences more clearly and simply.

Her later co-author, David Kessler, emphasized, “the central message of On Death and Dying is the importance of listening to what the dying have to tell us about their needs. Dr. Kübler-Ross noted some of the repeated patterns of the emotional response of hope but also denial, of acceptance but often with conditions. She has offered us words or labels to describe these patterns of response to help us summarize them. …They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss as there is no typical loss.”

The entire key to working with a person going through these stages is poignantly emphasized by her co-author, David Kessler. Listening to the ill person’s needs and experiences is absolutely critical. No loss is typical, and the way an individual processes their own illness will not fit neatly into a package and advance along a definite chronological ordering of stages. While stages implies to some that there is an order of progression, there is not. There is no new stage to get to; there is simply a process to which to attend and accompany someone who is terminally ill, and of paramount importance is their experience. We do a severe disservice if we try to pigeon hole them into a box or stage.

It is also important to help an individual look at their entire life and the good they have done rather than focus on a final generic stage process. A dying person is first and foremost still a person who is alive, coping with the stresses of illness, medical issues, interacting with medical personnel who may not have the time or energy to really listen, and having to consent to treatments and procedures they might really rather not go through. Patient empowerment is vital! No patient should ever be coerced or pressured, by family or medical personnel.

Reassurance is important. Loss is devastating. How much more so for the one facing death? They need reassurance that they can face what is to come, and that they have lived life to the best of their ability. Mistakes and regrets will come up, and they need reassurance that this is a normal part of life. They might need reassurance that their illness and death is not a punishment. They may even be familiar with the five stages, and need to be reassured that there is no correct way to move through the process, no linear progression, no delineated steps or stages they must get through before taking their last breath.

Kübler-Ross only started the conversation; she did not have the final say. Her stages describe five common experiences; not five required experiences, nor only five experiences. They are not a corrective approach. The stages of grief were not meant to tell the person what to feel, what they should feel, and when exactly they should feel it. They were not meant to dictate whether they are doing their grief “correctly” or not. They were meant to help normalize a deeply not-normal time. They were meant to give comfort. Kübler-Ross’ work was meant as a kindness, not a cage; a beginning, not an ending. The end goal is not acceptance. There is no finish line.

In one study, palliative care patients identified their top six spiritual needs as follows: to have time to think,  retain hope,  deal with unresolved issues,  prepare for death,  express true feelings without being judged, and speak of important relationships. These are the matters to which we should attend. It is a natural process; a process of the heart being torn asunder and broken open, of reality shifting and hurling one through space. It cares nothing for order or stages. It cannot be made tidy or predictable. There will be anger, yes, but we must make room also for peace and fear and joy and guilt and faith and doubt, and most of all, perhaps, confusion. We must, under all circumstances, make room for listening and presence. That is the most important of all.