Earlier this year, we launched a series on ‘Spirituality and Palliative Care’ that looked at how people deal with crisis and suffering when confronted with life-threatening disease. Following much interest in the subject, we’re delighted to publish more posts.
Today, we welcome Marie-José Gijsberts, a palliative care physician and researcher who is Co-chair of the European Association for Palliative Care (EAPC) Reference Group on Spiritual Care.
As a physician, I find that patients may present spiritual issues in very different ways. Sometimes, they discuss deep, existential wishes very explicitly. Like the 57-year-old woman with metastasized breast cancer, who had been suffering from severe nausea for months despite all the efforts to treat it. She could not eat or drink and had total parenteral nutrition (TPN). Her oncologist just told her the radiation treatment had not stopped the tumour from spreading in her stomach and that her life expectancy had become very limited. She wanted this physical suffering to be over as soon as possible, no more life-prolonging treatment. However, she shared a deeper existential wish: would it be possible to make the nausea and vomiting as bearable as possible and prolong the TPN, so she could be present when her only daughter was giving birth to her first child within a few weeks?
Sometimes, however, spiritual issues present themselves in a more hidden way, like the introverted 80-year-old hospice patient with terminal stage chronic obstructive pulmonary disease (COPD), whose shortness of breath had suddenly worsened. His oxygen saturation did not drop. Morphine did not help. One night, when he could not sleep, he told one of the nurses that he was very anxious he would not be able to say goodbye to his estranged daughter. When a meeting was arranged, and they reconciled, he was at peace, and passed away a few days later, more comfortable than he had been for weeks.
Cicely Saunders described in her concept of ‘total pain’1 how to see the patient’s spiritual suffering in relation to physical problems, referring to narrative and biography, and the importance of understanding the experience of suffering in a multifaceted way.1 Therefore, assessing patients’ needs at the end of life requires basic knowledge and skills to explore all four dimensions of palliative care, including the spiritual dimension.
For me, as a starting physician, it was a challenge to find my own voice to explore the psychosocial and spiritual dimension in conversations with patients. Each of these dimensions has their own language, and I had to develop an authentic way of ‘speaking them’. And, ultimately, to become so flexible that I could, for instance, address physical problems, and subsequently in a natural way switch to exploring existential needs. In 2015, I was very fortunate to attend a lecture by Margaret E. Mohrmann.2 She described the process of developing this four-in-one language as ‘learning Creole at the bedside’, ‘Creole’ being a language which has integrated several different original languages.
Is it possible to become more skilful in this by training? Yes, I think it is. Prerequisites for positive results are: to present such a training in a culturally sensitive way, to not only present knowledge, but also give opportunity to explore your communication skills, and to mimic everyday practice as much as possible. I am very optimistic in our mission to implement such trainings, so that we become more and more skilful to meet spiritual needs in our patients.
- Clark, D. Total pain: the work of Cicely Saunders and the hospice movement. American Pain Society Bulletin. 2000, 10(4), pp. 13-15.
- https://smhs.gwu.edu/gwish/events/7th-annual-spirituality-and-health-summer-institute Mohrmann M E. Why Is This Still So Hard? Medical Education’s Resistance to Spirituality (and Ethics).
Links and resources
- The EAPC Spiritual Care Reference Group.
- Contact Dr Marie-José Gijsberts by email.
- Clark D, ‘Total pain’: the work of Cicely Saunders and the maturing concept.University of Glasgow End of Life Studies blog. http://endoflifestudies.academicblogs.co.uk/total-pain-the-work-of-cicely-saunders-and-the-maturing-of-a-concept/ (accessed 9 June 2020).
- Read more posts in the ‘Spirituality and Palliative Care’ series on the EAPC blog. Next week our guest writer will be Dr Caitlin Pilbeam, an interdisciplinary medical anthropologist from the University of Oxford, United Kingdom.
WELCOME TO #EAPC2020 – EAPC WORLD RESEARCH CONGRESS ONLINE – 7 to 9 October 2020
Join palliative care specialists from across the world: share latest research, browse hot topics in the e-poster exhibition, view oral plenary and abstract presentations at a time convenient to you, join our live and interactive sessions for Q&As with plenary speakers. Register now for our first-ever online world research congress. CME accreditation available. The full content of the congress programme will be accessible to all delegates from late September until January 2021.
Share your experience of COVID-19 and the Palliative Care Response – submit a late-breaking abstract here. Deadline: 31 July 2020.