Welcome to Edition 239 of Institute Inbrief! As mental health helpers working with terminally ill clients, how are we to view death, and what philosophical or spiritual framework will help us work with clients dealing with it? This edition’s featured article entertains this question.
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Counselling the Terminally Ill: Anxiety and Spirituality
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 five aspects of this crisis:
- It is not solvable (that is: we may not be able to cure the cancer, lung disease or other illness)
- The client has likely not had any previous experience coping with chronic/terminal illness
- It threatens life goals: of the client, his or her family, friends, and co-workers
- It builds tension and anxiety; this can be integrative or disintegrative
- 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 needs 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. They 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.
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.
Kubler-Ross, E. (1995). Death is of vital importance: On life, death, and life after death (G. Grip, Ed.). Barrytown, NY: Station Hill Press.
Kubler-Ross, E. (1969). On death and dying. New York: Macmillan.
Lyness, J.M. (2004). End-of-life care: Issues relevant to the geriatric psychiatrist. The American Journal of Geriatric Psychiatry, Sep/Oct, 2004, 12(5); ProQuest Psychology Journals, 457-472.
Manis, A. & Bodenhorn, N. (2006). Preparation for counseling adults with terminal illness: Personal and professional parallels. Counseling and Values: Apr, 2006, 50(3), 197-207.
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.
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The Gut-Brain Connection
What if I offered you a holiday which either tasted good or during which you would look and feel good? Which would you choose? Would you rather eat and drink whatever you like from that laden holiday buffet or be in a good mood – and feel healthy – while you stand around it? The question is not as silly as it sounds. New discoveries in neuroscience are helping health researchers understand how the gut-brain connection works to keep you healthy – or make you sick.
Studies confirm: gut bacteria affects brain function
We’ve always known that the brain can send messages to the gut. For example, when you perceive that you’re in an uncomfortable or dangerous situation, those butterflies in your stomach are a clear message from the brain. But mounting evidence shows that the bacteria in our gut can also affect our brain, creating anxiety, depression, and more. Researchers at UCLA have now been able to demonstrate that the gut-brain connection is a two-way street. In their proof-of-concept study, women who regularly ate yogurt containing beneficial bacteria (a probiotic) had altered brain function compared to those who did not consume probiotics.
You have two nervous systems
Your central nervous system, composed of brain and spinal cord, is made from identical tissue as your enteric nervous system – the nervous system of your gastrointestinal tract. The bacteria, fungi, viruses, and other micro-organisms that make up your gut comprise 90% of your body’s cells — and they don’t just sit there, sending more information to the brain (via the vagus nerve) than the brain ever sends to the gut.
Just like the brain atop our shoulders, the gut-brain has hormones and neurons, including some which produce neurotransmitters such as dopamine and serotonin, involved in mood control, depression, and aggression. In fact, there are greater amounts of serotonin in your gut than there are in your brain, which could explain why anti-depressant medication, which raises serotonin levels in the brain, is often ineffective in treating depression. It also explains why dietary changes often help lift mood; we’ll come back to that in a moment.
Messages of inflammation create ill health
External stressors, emotional imbalance, a poor diet (especially one full of sugar and food additives), and environmental toxins create a gut with an excess of negative microbes. As it gets out of balance, the gut becomes inflamed and sends messages about the inflammation to the brain and immune system. The inflammation causes brain/ mental health and other problems.
The list of physical diseases now thought to be brought on by the wrong gut microbes is much longer than previously suspected. If your gut is unhappy, it can lead to:
- Immune function problems, such as Multiple Sclerosis and Alzheimer’s
- Diabetes: the gut microflora of diabetics is different from that of non-diabetics
- Obesity: the make-up of gut bacteria differs between lean and obese people
- Autism: babies whose gut flora develop abnormally often come to have compromised immune systems and are at high risk for developing ADHD, learning disabilities and autism
- Asthma and allergies
There’s a war going on
Given the vital importance of “good” gut bacteria to overall health, it should come as no surprise that most of us are engaged in a war; the conflict zone is our intestinal tract and the combatants are our healthy bacteria holding out valiantly against hordes of invaders that often cause widespread destruction. Here are a few of the gut attackers:
- Conventionally-raised meats and animal products, which are often continually fed low-dose antibiotics
- Processed foods: the excess sugars and other “dead” nutrients which feed the unhealthy bacteria
- Genetically modified foods, which have been shown to destroy good gut bacteria
- Chlorinated and/or fluoridated water
- Antibacterial soap (yes, it kills all the good bacteria as well as the pathogenic ones)
- Agricultural chemicals
So, what should someone aspiring to good health do?
Getting back to the buffet…
The good news is that the make-up of the gut microflora isn’t usually permanent; we can alter it through strategies such as diet, stress management, and managing environmental toxins. The kind of fare offered at get-togethers is typically meat-based and high in carbohydrates and sugar. Prevalent artificial sweeteners, food colouring, and additives are just as bad, as are gluten and dairy foods for some. While you may not have much control over the menu, you can control which items you choose to put on your plate, and how much of them you eat. Are all those delicious sweets – gulped down in a few minutes – worth risking your stable, upbeat mood for?
At home, before and after the parties, you have additional options:
- Avoid refined, heavily processed foods in your diet.
- Eat unpasteurised and traditionally fermented foods. Some of the good bacteria in these also help get rid of heavy metals and pesticides, which helps the gut by reducing the toxic load. Included here are fermented vegetables, such as sauerkraut and kim-chi, kefir, and “lassi” (the yoghurt-based Indian drink)
- Regularly take a high-quality probiotic supplement.
- Holidays can be such a fun time, but you’ll enjoy all the parties so much more if you’re not anxious, depressed or sick because your good gut bacteria are losing the battle to the disease-creating ones.
Ivey, A.E. & Ivey, M.B. (2015). Neuro-counselling: Bridging brain and behaviour: Redefining ‘gut feelings’. Counselling Today, July, 2015,14-15. Retrieved on 10 November, 2015, from: hyperlink.
Mercola. (2013). Your gut bacteria affects your brain function, study confirms. Mercola.com. Retrieved on 10/11/15 from: hyperlink.
Written by Dr Meg Carbonatto B.S., M.A., and Ph.D.
This article was originally published in Asteron Life’s Balance Blog. AIPC regularly contributes to Balance’s wellbeing blog category.
Trauma: The Therapeutic Window
If you had to endure a traumatic event – say, dangerous flooding, an out-of-control bushfire, or being caught up in terrorism – would you want to talk about your experiences later? Early models for treating trauma asked clients to do this, insisting that the cure was in the retelling. Just around the millennium, however, research began to show that, while some people were helped by going over the trauma again with a counsellor or other “de-briefer”, many others’ trauma symptoms were exacerbated by the insistence on going over the event. Observing that individual clients’ unique ways of processing trauma impacted on their retelling of traumatic experiences, Briere developed a model for assessing and manipulating the intensity of trauma exposure in individual clients which would allow them to remain in a non-re-traumatising “therapeutic window”.
The Phenomenon of Dissociation
Dissociative identity disorder (DID) and other dissociative disorders (DD) are understood to be fairly common effects of severe and extreme trauma in early childhood when repeated physical, sexual and emotional abuse are part of the individual’s history. In fact, the placement of dissociative disorders in the DSM-5 is next to (but not part of) the chapter on trauma and stressor-related disorders, reflecting the close relationship between these diagnostic classes (APA, 2013). There are various dissociative disorders, all of which feature some form of dissociation. But what, exactly, is the phenomenon of dissociating about?
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The social value of being an active listener
Every year my siblings look forward to the visit my husband and I make to my country of origin. They are very glad to see me, but they can’t wait to see him. Why? When he is with each one, it is as if that person is the only human being on the planet. My husband gazes at the person with unwavering interest, drawing them out, checking that he has heard things correctly, and backing up the whole encounter with congruent body language. In short, my husband has mastered the art of being interested. So many people long to be the life and soul of the party – that is, to be interesting – but let’s have a look at just how potent an asset it is to be a skilful listener instead.
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