Winter 2016 edition of the EONS Magazine - catch up with the EONS-10 Congress

Living with dying from cancer: myths, challenges and revelations

Helen Greally looks at the modern experience of death.

The way we die has changed dramatically over the last number of decades. Contemporary dying often comes at the end of a prolonged illness experience with numerous remissions and relapses. This leads to longer periods of anticipatory grief for the patient and the family and more importantly longer periods of uncertainty.

One of the first questions that arises is ‘when does dying begin’? When the condition develops, when it is diagnosed, when the patient gets the news, when the person realises that the disease is terminal or when treatment is no longer an option? The answer of course is that it is different for each individual and ‘all dying is not the same’. Factors that influence dying include age, gender, the nature of the disease, religious and cultural beliefs. The needs of the dying are many and varied, including the need for presence and engagement, to make sense of what’s happening, for self-belief.

So dying is not just a biochemical malfunction – it is above all else a human complex, multi-faceted and unique experience.

From the time that Elizabeth Kubler Ross carried out her groundbreaking research with terminally ill patients in 1967, awareness has been growing that the dying go through a grief process, when faced with their own deaths. Kubler Ross’ description of the process, known as the five stages of death and dying, has become the yardstick by which we frequently measure the individual’s journey at the end of life.

Corr & Corr (2013) has relied on a task-based approach to dying, suggesting that there are four primary needs which are physical, psychological, social and finally spiritual. 

Cartoon

While one of the advantages of stage and/or task models may be to offer a roadmap through the landscape of dying and give meaning to common behaviours we see in dying people, they fail to give voice to the rich and varied journey of the dying experience.

Myth 1 – It’s good for everyone to talk

So what are the myths, and revelations around living with dying? The first myth is that ‘It is good for everyone to talk’, but the reality is that not everyone needs to talk. People generally use the same communication pattern in dying as in living and non-talkers do not become talkers overnight. The second strong belief around dying is that ‘talking always helps’. In fact, just as in life, talking doesn’t help everyone. This is particularly the case when there is a mismatch between the dying person and family members and because this is such a significant transition, we must take our lead from the dying person.

Myth 2 – Everyone is afraid of death

There is another myth that nearly ‘all dying people are afraid of death’. In fact, the majority of people are afraid of dying and not of being dead. This brings into sharp focus, the absolutely essential role of nursing staff in the transition from life to death – and even if you only have five minutes to spend with the dying patient, full and real engagement during that time will have a very profound positive effect on the patient. There is a widespread belief that ‘everyone accepts’ their own death but in fact there are many patients that find it incredibly difficult to accept their dying. This is often due to factors such as age, timing of the illness, length of sickness and worries about those left behind. And finally, there is a myth that the journey through dying is linear and/or sequential but in fact it can be an emotional rollercoaster with many ups and downs, a see-saw effect.

How can we help?

So as healthcare professionals how do we help those we care for cope with dying? Do we try and prescribe it or adopt a ‘do it yourself’ approach? And how aware are we of our own biases based on our previous experience of death and dying? The challenges include supporting the dying to accommodate a balance between self and illness. We also need to create solitude through presence.

Triangle of interaction

Triangle of interaction

We need to develop a personal philosophy of death and dying through education and self-awareness so that we can become truly present to those with whom we share some of the dying experience.

There are no magical conversations when we are with the dying. The key questions to consider are the person’s coping and communication style because this will inform the appropriate approach to support them through this time. A very useful approach may be through the work of Robert Niemeyer (2014), who has used narrative therapy as a way of dealing with loss and grief. The essential value of interaction with dying people is the ability to allow them to tell and retell their stories in meaningful ways that allow the person to make sense of their experience of dying. In this approach, dying is shaped by personal, familial and cultural factors that do not easily fit into stage or task models. It is an active process and in this, meaning reconstruction is central to the process. Life is a story which we weave ourselves and the process of dying both informs and disrupts this. For example, a very important area for discussion is the idea of leaving a legacy for those they care about through how they themselves have lived their lives. Try to stay away from the idea of acceptance and use the concept of ‘willing’ to look at what this means for them.

No prescribed way

It is also important to pay attention to the cognitive processes involved in dying as well as paying attention to the emotional consequences of loss. We should also meet the dying where they are at, not where we think they should be. There is no prescribed way to die and the biggest task for the caregiver, whatever their professional role, is to respect both acceptance and denial of dying with equal welcome.

Finally, we should be aware that working in the area where grief and loss is a daily feature requires us to pay particular attention to the role of self-care. We need to stand close enough to the dying to show our care and understanding, whilst never losing sight of the fact that this is their journey of dying and not ours.

Helen Greally

Helen Greally, Director of Psychology & Support Services Cancer Care West, Galway, Ireland

Dr Helen Greally has been working as a clinical psychologist since 1981, both in the public service and in private practice. She completed the first longitudinal study of spousal bereavement in Ireland and has lectured widely on this topic to doctors, nurses, teachers, allied health professionals and the wider public. She currently teaches on the Masters in Bereavement Studies at the Irish Hospice Foundation. She has an abiding interest in improving quality of life for those living with chronic or terminal health conditions.

She currently works as Director of Psychology and Support Services at Cancer Care West which is a not for profit organisation based in Galway city one of whose primary aims is to enhance and promote patient care for cancer patients in the West of Ireland. It offers a wide range of supports to cancer patients and their families.

In 2015, the service saw over 1400 people affected by cancer. Its philosophy is to enhance coping with cancer by taking a collaborative approach towards its management. All its services are free of charge, confidential, evidence based and professionally delivered.