"Each day, think about the positive things that have happened during the day, and share them with your loved ones." This was the recommendation of Susan Folkman, the first plenary speaker at the 19th International Congress in Palliative Care.
In her paper on stress and coping for caregivers, Dr Folkman shared her experience of her journey into the coping strategies of caregivers of loved ones who were dying.
She shared the experiences of caregiving partners of men with AIDS through the UCSF Coping Project from 1990-1997, when they interviewed 253 caregivers. Whilst being aware of the stress of caring, it was the positive emotions experienced during stress that enabled caregivers to cope with the situation that they were in.
These results were also seen in later studies in a variety of caregiving groups. During the session, Dr Folkman shared four examples of meaning-focused coping strategies for caregivers:
- Revising expectations and goals which helps sustain a sense of control, hope and redefines goals
- Focusing on underlying beliefs and values
- Benefit finding - reflecting on growth in personal strengths and resources
- Noting positive moments
Coping mechanisms of caregivers will vary, and will depend in the individual.
Likewise, the issue of dignity in end-of-life care, as discussed by Harvey Chochinov, is unique to the individual. During his plenary talk: 'Dignity at End of Life,' Dr Chochinov shared the principles behind Dignity therapy and challenged us that respect for individuals is key and our perceptions and the way that we see patients has an impact on their experience.
He shared with us a video of a lady explaining the benefits of dignity therapy, and how it had allowed her to say the things she wanted to, to her family, her husband, her children and her grandchildren, and how she was able to give her husband 'permission' to find another partner as she did not want him to be alone. Dignity therapy is therefore about giving individuals the opportunity to say things that matter most, issues, history, stories etc. These are recorded, transcribed, and returned to the individual to review and, once finalised, to leave for their loved ones.
The first plenary session of the congress set the scene for us to remember both the patient and the carer, delegates were also given time to reflect as we listened to the words of the song 'Hallelujah' by Leonard Cohen. This song reflects faith, loss, hope and the redemptive power of love and, as we meet together at the congress, discussing the multi-faceted nature of palliative care, we are reminded of the power of love, and the centrality of the patient, their carers and families, in all that we do.