Australians, like Americans and their other Western counterparts, are living longer but suffering more chronic diseases. While the Australian boy born today can expect to live to 79.9 years and the Australian girl to 84 (the American statistic is similar), the odds are that they will be plagued by chronic illness, which will eventually kill them. Eighty percent of deaths in the United States now occur among persons age 65 years and older (Lyness, 2004). The majority of deaths occur in the context of chronic illness associated with functional decline. For example, at the time of death, 75 percent are unable to walk, 33 percent are incontinent, and 40 percent are cognitively impaired (Sullivan, 2003). In Australia, about 20 percent have more than one chronic condition (ABC News, 2014), and chronic illness – the leading cause of illness, disability, and death – accounted for 90 percent of all Australian deaths in 2011 (AIHW, 2015).

For all the prevalence of chronic illness-becoming-terminal, however, clinicians note that few resources are available which address grief and loss in a chronic illness context. Moreover, numerous studies have shown that counsellors are uncomfortable dealing with grief- and loss-related concerns, particularly loss related to death (Kirchberg, Neimeyer, & James, 1998). In one study, 60 percent of rehabilitation counselling trainees were either negative or neutral about working with a client with a life-threatening illness, and 75 percent of the students had a moderate or higher level of death-anxiety themselves. A whopping 83 percent stated that counsellors needed (more) death and dying training (Hunt & Rosenthal, 1997).

Clearly, if we in the helping professions are to serve the burgeoning demographic of older, often unwell, people – or the caregivers caring for them – we need to know what their needs are. How are we to view death, and what philosophical or spiritual framework will help us work with clients dealing with it? This article entertains the question of what philosophical or spiritual preparation mental health helpers need in order to counsel someone who is chronically ill or dying, or that person’s caregiver.

Loss and grief counselling: Anxiety and spirituality

Loss and the consequent experience of grief is an unavoidable part of human experience, yet much controversy surrounds the question of how we should deal with it when it occurs in the context of illness and/or death. As death constitutes arguably the most major transition a human being on the planet ever makes, it is not surprising that we tend to approach the issue cautiously, sensing its sensitivity.

Death anxiety is universal, but we must recognise it

It would seem that death anxiety is a universal human phenomenon, playing a major role – according to existentialist Yalom (1998) – in each person’s internal experience. Yalom notes that a major early developmental task for children is dealing with the fear of having their existence obliterated. To cope with that fear, they erect defences against death awareness in one of two ways: (1) by developing a belief in their own specialness and inviolability (hence the tendency in Australia and New Zealand to refer to young people, especially, as thinking that they are “ten feet tall and bullet-proof”), or (2) by putting faith into an ultimate rescuer. Obviously, being given a diagnosis of a terminal illness – or even a chronic illness which will lead to premature death – is a direct challenge to such defences.

Not only Yalom, but also famously, Elizabeth Kubler-Ross, a pioneer in the field of death and dying, highlights the inextricable linking of life and death, arguing that awareness of death presents some of the most potent opportunities to enrich life (Kubler-Ross, 1995). At the very least, such a diagnosis probably serves as a catalyst for reflection on the ultimate meaning of things.

Authors Amie Manis and Nancy Bodenhorn (2006) characterise it like this. All of us – clients, their caregivers and families, people with no illness, and also mental health helpers – live along a continuum of death anxiety and death awareness. As part of the process of preparing to work with clients, we as counsellors must recognise our own position along the continuum.

The continua of death awareness/death anxiety: Where are you?

Let’s work with that idea for a moment. First let’s rate your death awareness. If the continuum goes from 1 to 10, with 1 representing “I hardly ever even think about death” and 10 signifying, “I am highly aware of death and think often about how it will be”, what is your number? What puts you there? Was death awareness always at this level for you, or have recent events changed things?

Moving on to the question of death anxiety, let’s say – on the same continuum – that 1 represents complete comfort with the thought of dying and 10 signifies an absolute panic about the idea. Now what number would you assign to yourself? What life events do you imagine have contributed to you putting yourself there? For example, you may have seen a cherished family member endure a long and painful dying process and feel like you would do anything to avoid that fate, likely placing you further up the scale. Alternatively, you may have had the opportunity to observe the passing of someone who was able to die with grace, dignity, acceptance, and a welcoming attitude to the adventures that he or she believed lie beyond the physical realms. Perhaps in this case your own score would be lower.

Diagnosis shifts clients into crisis mode

Manis and Bodenhorn insist that, in addition to self-awareness about death, we must be aware of our clients’ levels of death awareness and death anxiety. They cite research (Kirchberg, Neimeyer, & James, 1998, in Manis & Bodenhorn, 2006) which showed that lower levels of death anxiety in the counsellor corresponded to higher levels of empathy for the client and also lower levels of secondary trauma experienced by the counsellor in working with the client. But here’s the catch: the levels are all moving. That is, a diagnosis of chronic or terminal illness inevitably causes a shift in where people are along the continuum. It is a crisis, after all, a phenomenon which many have come to explain through the two Chinese pictograms that “spell” crisis: danger and opportunity. Manis and Bodenhorn note Rando’s (1984 in Manis & Bodenhorn, 2006) summary of the f ive aspects of this crisis:

1. It is not solvable (that is: we may not be able to cure the cancer, lung disease or other illness)
2. The client has likely not had any previous experience coping with chronic/terminal illness
3. It threatens life goals: of the client, his or her family, friends, and co-workers
4. It builds tension and anxiety; this can be integrative or disintegrative
5. It brings unresolved problems to the forefront (Rando, 1984, in Manis & Bodenhorn, 2006)

So how do we as mental health helpers be with this sort of crisis? We can look for answers to the nature of the counselling relationship that is helpful for chronic/terminal illness counselling.

Exploration of existential/spiritual meaning and the counselling relationship

Just as the client’s levels of death anxiety may shift during the processes of illness/dying, so, too, do the phases of the process shift, beginning with the acute crisis phase, moving on to the chronic living-dying phase, and ending with the terminal phase, when the person is close to death (Manis & Bodenhorn, 2006). In addition, individuals with terminal illness go through stages in a pattern unique to themselves, but frequently characterised by Kubler-Ross’ five stages of death and dying (denial, anger, bargaining, depression, and acceptance; Kubler-Ross, 1969).

Exploring spirituality: the intention and the “permission”

Suffice it to say here that each phase or stage of the illness/dying process requires a different role for the counsellor, from helping the person to reduce anxiety in the acute crisis phase to helping the client with the adaptive tasks confronting a seriously ill person in the chronic phase to facilitating an appropriate death (conflict-reduced, with resolution of concerns) at the terminal phase. This point is immediately crucial for us as mental health helpers if we would serve in the most profound way possible: each phase and stage, regardless of the appropriate counsellor task(s), can and should be permeated with the counsellor’s intention to facilitate – and the counsellor’s “permission” to the client to explore – existential or spiritual meaning as a way of helping the client to live the remaining time as fully and integratively as possible. This need s to be different from “regular” psychotherapy, even transpersonal psychotherapy, says Kubler-Ross (1995), because the dying client needs the stigma and pathologising of the terminally ill to be removed. That can only happen if there is a genuinely egalitarian relationship between therapist and client.

Kubler-Ross emphasised this authentic equality by asserting that knowledge alone would not help terminally ill clients. Rather, the helper needed to involve head, heart, and soul, acknowledging that each other soul has a purpose, and being open to learning from such clients, even while facilitating their growth (Kubler-Ross, 1995). She further stated that counsellor death anxiety created a cloud of negativity, undermining communication with the client. Counsellors, she claimed, needed to shift their mode of being up to a more refined, more intuitive level, thereby becoming more competent at deciphering communications from clients who are often cognitively and communicatively impaired at late stages of illness. Such shifts can happen more fully if counsellors are able to face their own mortality; doing so becomes the helper’s vehicle for both personal and professional development.

As Puchalski suggests:

“All of us, whether actively dying or helping care for the dying, have one thing in common: we will all die. The personal transformation that is often seen in patients as they face death can occur in all of our lives. By facing our inevitable dying we can ask ourselves the same questions that dying patients face – what gives meaning and purpose to our lives, who we are at our deepest core, and what the important things are that we want to do in our lives. By attending to the spiritual dimensions of our personal and professional lives, however we express that, we can better provide care to our patients” (Puchalski, 2002).

Thus we see that living with the knowledge of death, while potentially enriching for everyone, is critical for counsellors working with chronically and terminally ill clients – or even their caregivers. This makes sense, for how do we help a client come to terms with their death if we have not contemplated the questions that help us look into our own? Manis and Bodenhorn (2006) suggest that how we frame death is key to the capacity to sustain ourselves, even finding joy in such work. While acknowledging that discussions of spirituality in counselling have traditionally been viewed as “out of bounds” (p 204) – and the concomitant facilitation of spiritual exploration a “controversial” counsellor role (p 202) – it is nevertheless important to understand the pivotal role that counsellors are in: being able to help clients more fully experience their spirituality as part of living in as much wholeness as possible, and while doing this, experiencing their own spiritual growth.

Moving toward the opportunity part of the crisis

Those with high death anxiety might be surprised to hear this, but people who do the work of facing into their own death come to see opportunities in the experience of death. Yalom (1998) offered observation of a number of startling shifts, indicating personal growth, which characterised terminally ill people who had used the experience of illness as a springboard to greater awareness and to connection with spiritually meaningful experiences. He said that they were able to rearrange life’s priorities, recognising the trivial as trivial, and liberating themselves from things they did not wish to do. Such clients had, said Yalom, an enhanced sense of living in the immediate present, rather than postponing life until retirement or some other future point. They communicated more deeply with loved ones than before the crisis, had fewer interpersonal fears, and took more risks than before. Th ey appreciated with greater vividness the basic aspects of their lives: the changing seasons, the wind, and the falling leaves (Yalom, 1998).

Many have described the heightened sense of creativity when time is perceived to be short. In her book on resilience, Carbonatto (2009), for example, describes a minister who was said to be terminally ill with prostate cancer. He noted that, although his body was some days so weak he could hardly climb up a flight of stairs to his home, he nevertheless was flooded with creative ideas: many of which he actioned during the illness and then later, when he didn’t die as predicted. After finding a more meaningful way of doing his ministry, he survived the cancer.

The take-away message here for mental health helpers is this. We can and are the most logically placed to help clients with a difficult diagnosis face into the loss and grief that that brings. While it is not easy, the work can be highly rewarding, ushering clients into a higher plane of spiritual awareness, from which they can confront the ultimate transition of death. We cannot lead them where we have not gone, so our role as helpers is to do our own work. This is the mandatory preparation required for counsellors and other mental health helpers who would assist the chronically and terminally ill to not only confront the loss and consequent grief that their illness brings, but to also realise the opportunities inherent within it.

This article was adapted from the upcoming Mental Health Academy professional development course “Loss and Grief from Chronic and Terminal Illness”. For more information, visit www.mentalhealthacademy.com.au.

References

• ABC News. (2014). Australians living longer but suffering more chronic diseases: Australian Institute of Health and Welfare. ABC News. Retrieved on 16 November, from: hyperlink.
• AIHW. (2015). Chronic diseases. AIHW (The Australian Institute of Health and Welfare). Canberra. Retrieved on 16 November, 2015, from: hyperlink.
• Carbonatto, M. (2009). Back from the edge. Auckland, New Zealand: Cape Catley, Ltd.
• Hunt, B., & Rosenthal, D.A. (1997). Rehabilitation counselors-in-training: A study of levels of death anxiety and perceptions about client death. Rehabilitation Education, 11, 323-335.
• Kirchberg, T.M., Neimeyer, R.A., & James, R.K. (1998). Beginning counselors’ death concerns and empathic responses to client situations involving death and grief. Death Studies, 22(2), 99-120.
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• Puchalski, C.M. (2002). Spirituality and end of life care. In A.M. Berger, R.K. Portenoy, & D.E. Weissman (Eds.), Principles and practice of palliative care and supportive oncology (2nd ed., pp 799-812). Philadelphia: Lippincott Williams & Wilkins.
• Sullivan, M. (2003). Hope and hopelessness at the end of life. The American Journal of Geriatric Psychiatry; Jul/Aug, 2003; 11(4); ProQuest Psychology Journals, 393-405.
• Yalom, I.D. (1998). Existential psychotherapy. In B. Yalom (Ed.), The Yalom reader: Selections from the work of a master therapist and storyteller. New York: Basic Books.