The concept of ‘total pain’, coined by Dame Cicely Saunders over 50 years ago (1) and recently and popularly re-invigorated by Atul Gawande’s Being Mortal (2), is deeply embedded within the culture of palliative care.
Yet the majority of research, clinical guidelines and treatment algorithms are devoted to the pharmacological treatment of pain in advanced malignant disease. Pain is prevalent in eight advanced non-malignant diseases that we see in palliative care (3), yet pain is under-assessed and treated in these mainly chronic and degenerative illnesses.
Psychological, social, relational, spiritual and emotional aspects of pain in cancer are acknowledged and conceptualised variously as distress or suffering, and yet very little is known about these components of total pain in patients with non-malignant illness.
As the remit of palliative care broadens and the population ages, with increasing numbers of older patients in pain with multiple co-morbidities including cancer, it would seem to be important to understand, assess, and find effective and cost-effective ways to treat elements of total pain. Delivered in innovative ways across primary, secondary and tertiary care and interfacing with public health initiatives.
Self-management, education, social support, psychological and rehabilitative interventions are recommended in the literature (4,5,6,7) for supporting people living with chronic, terminal illness, but there is a lack of clarity about what works, for whom, and in what context. There is also a lack of evidence about theoretically grounded, properly evaluated interventions and in practice it seems that it’s “luck of the draw” in terms of what is available in different regions, via charity, community or hospice-based support.
Yoga and mindfulness
At my local hospice, I offer one such physical, psycho-social-spiritual intervention called mindful yoga. The concept of total pain maps perfectly onto this holistic practice, with its explicitly multi-dimensional philosophy aiming to “yoke” together (translation of the Sanskrit “yoga”) the interdependent parts of ourselves.
Patients with a variety of advanced disease living with uncertainty, pain, fear, breathlessness and physical decline are desperate for opportunities to learn how to “let go”, relax, share their stories, move, breathe and discover what they can do, rather than focus on the losses associated with having a terminal disease.
In yoga, patients are encouraged to experiment with their bodies, trust the flow of their breath, experience self-compassion and explore, via quiet self-awareness and meditation, habitual reactions to bodily sensations and learn ways in which to respond more gently and usefully. Patients report improvements across all dimensions of total pain.
Patients have commented “I feel relaxed and I used to panic about things” and “my pain levels are less random and more predictable giving me better coping ability” and “my mind is more peaceful, relaxing stress”.
In the last five to ten years, yoga and mindfulness research internationally has gathered pace and improved in quality and yet – with such a complex set of interventions (no two yoga interventions are the same!) – it is difficult to isolate and test mechanisms of effect.
What I’ve found is that yoga and mindfulness is increasingly being commissioned in the UK in hospices, cancer centres and specialist units, and recommended by GPs and charities, but that data about prevalence of use and service evaluation is lacking.
What is clear from my clinical practice over six years, and supported by research, is that mindful yoga isn’t simply additive but synergistic and transformative. It affects each individual in a unique way, interacting with their beliefs about themselves, about illness and treatment, spirituality, past history, relationships and possibilities of change and hope.
There seem to be complex multilevel processes at play from parasympathetic activation to vagal stimulation and hormone regulation via breathing and relaxation (8), to the encouragement of subtle behavioural and cognitive changes that affect perceptions of coping and psychological flexibility in the face of death (9).
As Havi Carel (philosopher and author of Illness) says, a diagnosis of terminal illness presents a “violent invitation to philosophise” (10) and mindful yoga seems to offer patients the space in which to do this important work, while at the same time learning simple, practical tools to manage symptoms via what is essentially breath-work, progressive relaxation and visualisation.
There is also utility for mindful yoga for staff, who are increasingly under pressure and dealing with their own considerable professional uncertainties as the NHS faces cuts and seismic changes. Staff are exhorted to deliver compassionate care, but where is the support, resources and time for them to practice self-compassion and look after their bodies and minds? What about the total pain of our staff? (see my previous blog When death jumps the barrier).
If you are interested in learning about using body-mind techniques in supportive and palliative care and for self-care, please contact Sobell House for details of upcoming CPD courses. The next date for this course is 21 October 2016.
- D Clark. ‘Total Pain’, Disciplinary Power and the Body in the Work of Cicely Saunders, 1958-1967. Social Science & Medicine. 1982; 49(6): 727–36.
- A Gawande. Being Mortal. Metropolitan Books; 2014.
- K Moens et al. Are There Differences in the Prevalence of Palliative Care-Related Problems in People Living with Advanced Cancer and Eight Non-Cancer Conditions? A Systematic Review. Journal of Pain and Symptom Management. 2014; 48(4): 660–77.
- Johns Hopkins Bloomberg School of Public Health. Improving Health Care and Palliative Care for Advanced and Serious Illness.Johns Hopkins Bloomberg School of Public Health. Available at: http://www.jhsph.edu/research/centers-and-institutes/health-services-outcomes-research/research/improving-health-care-and-palliative-care-for-advanced-and-serious-illness.html [accessed 12 September 2016]
- NICE. Improving supportive and palliative care for adults with cancer. Cancer service guideline [CSG4]. Available at: https://www.nice.org.uk/guidance/CSGSP [accessed 1 December 2015]
- CSPMS. Core Standards for Pain Management Services in the UK. The Royal College of Anaesthetists; 2015.
- T Tiberini, H Richardson. Rehabilitative Palliative Care: Enabling People to Live Fully until They Die. A Challenge for the 21st Century. Hospice UK; 2015.
- L Schmalzl, C Powers and EH Blom. Neurophysiological and Neurocognitive Mechanisms Underlying the Effects of Yoga-Based Practices: Towards a Comprehensive Theoretical Framework.Frontiers in Human Neuroscience. 2015; 9:235.
- NJ Hulbert-Williams, L Storey and KG Wilson. Psychological Interventions for Patients with Cancer: Psychological Flexibility and the Potential Utility of Acceptance and Commitment Therapy. European Journal of Cancer Care. 2014; 24(1):15-27.
- H Carel. Illness: The Cry of the Flesh. Acumen Publishing; 2013.