People with a life-threatening disease can be faced with existential questions, such as:
Have I loved well the people close to me? Have I told them what they mean to me? Have I been thankful? Are there things I need to ask forgiveness for? Have I lived a meaningful life, or did I let life slip through my fingers?
Will I be able to cope with the treatment? Will I survive? What will happen to my body as the disease progresses?
…and many more…
These questions may press our own death anxiety buttons, because they are questions that we all need to address in our daily lives, but so often put on standby, because life is so hectic, and one day, it may be too late.
Have we never watched our children asleep in bed like angels and felt a lump in our throat, because we were too busy to read them a goodnight story? Have we never lost a friendship, because we were more worried about being right than happy? If we knew we had a short time to live, would we be doing what we do today, or would some things gain a different perspective? Do we worry about getting old? About wrinkles, flabby legs and white hair?
So, these existential fears are similar in life and death, just that for us, they are not right at our doorstep yet. We can still shove them under the carpet – until we enter a close relationship with someone who is forced to face these questions right now.
Being present
As we talk to someone with a life-threatening disease, their anxieties may trigger ours and feeling anxious may interfere with our capacity to be present.
What is the normal reaction we have when something is causing us discomfort? We focus on the discomfort and try to do something to make it go away.
However, while we are busy focusing on our own discomfort (even if not at a conscious level), we are not able to be fully present for the person we are with. Our need to feel useful and “fix” things, including our own discomfort, may lead us to constantly do things to make the other person feel better. And while there are many things that can be done in palliative care to make a sick person feel better, there is a part of a person’s suffering that cannot simply be fixed.
We need to be able to accept what the other person is feeling and, with our calm presence, act as a safety net. We need to create a space within ourselves that can hold whatever the person we are with wants to share with us.
If we are afraid of being a witness to suffering, it is most probable that we will find ways to avoid it, and our patients may also sense our fear and spare us by concealing their real feelings. We are not helping our patients this way, and in the long run, we are not helping ourselves, because deep down, we know we are avoiding a real and truthful relationship, and this does not lead to professional fulfilment.
Life and Death, the Same Preparation
Death anxiety is part of being human, and healthcare workers and volunteers who care for people facing death also need to have a space for themselves to reflect upon their own existential issues and the resources they have to cope in life.
The intervention Life and Death, the Same Preparation, serves precisely this purpose. It provides three full days of personal development, where healthcare workers and volunteers can look at their own lives in a safe atmosphere, and where they may feel free to reflect and share without the fear of being judged.
The second part of the course provides a further three days of practical skills to engage in a meaningful helping relationship.
The intervention was the subject of a mixed methods PhD study at the University of Kent. 208 healthcare workers participated in the course, with an average of eight participants per course. Quantitative results showed a decrease in burnout, an increase in personal existential wellbeing, and an increase in self perceived helping relationship skills (1,2).
Comments from the qualitative study showed:
A reduction in feelings of incongruence: “The relationship with the patient improved, because the course helped me to accept that suffering is part of life, and this allowed me to stop running away or avoid talking about these things with the patient.”
More self confidence: “It gave me more confidence and motivation in my relationship with the patient. More confidence, because I began to understand the experiences they go through with their illness and losses. More motivated, because I understood how much we can do with simple gestures, with love and with five minutes of attention.”
More awareness to live life with meaning: “It allowed me to give more value to the meaning of life in a way that I hadn’t done before, which probably influenced my attitude towards life and other people.”
A reduction in feelings of helplessness: “If we accept death better, and that the patient is here to die, but with more quality of life and less suffering…maybe we will be capable of caring for them differently. Not that before we cared for them badly – we gave the best technically – but perhaps in terms of relationships, we can help the patient in a different way.”
The full report on this study can be downloaded from the AMARA website.
If you would like more information about the logistics and costs of hosting this course at your hospice, or for a group of local hospices, contact Carol at carolgouveiamelo@amara.pt or on 00 351 962730796.
References
- Gouveia e Melo C, Oliver D. Can emotional support for health care workers to cope with death anxiety reduce burnout and improve patient care? Journal of Palliative Care. 2011; 24(4): 287-295.
- Gouveia e Melo C. Oliver D. Assessing burnout in Portuguese health care workers who care for the dying: validity and reliability of a burnout scale using exploratory factor analysis. Psychology, Community & Health. 2012; 1(3): 257-272.
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