by Dr Ed Richfield
The model of Parkinson’s disease in four phases was first described by two founders of the original Parkinson’s MasterClass(1), and are well recognised by those familiar with the disease, particularly Academy alumni. This approach is useful in understanding the progressive nature of Parkinson’s disease (PD) and the implications this has for patient, carer and clinician. At the MasterClass we often discuss the nuanced approach to care “as the going gets tough”, alluding to the balance of motor, non-motor and psycho-social issues which feed in to treatment decisions in the complex phase of disease. However, all models of care are subject to review and as our understanding of palliative care has evolved, is it time to reconsider the position of the fourth “palliative” phase?
Hopefully we are all now familiar with, if not openly adopting, the WHO definition of palliative care, which describes its role in chronic, life-limiting, non-malignant condition, from the time of diagnosis and alongside other active treatments(2). This immediately challenges the linear approach to care adopted by many clinicians – by no means limited to PD, and is difficult to apply if we hold rigidly to the four phase model. Moreover, for People with Parkinson’s (PwP) there is growing evidence that a burden of palliative care need may be present from the time of diagnosis. In the Advanced MasterClass for example, we discuss the emerging models for maintenance of ‘hope’ in PD and the implications for timing of discussions around advanced stage disease. We also touch on the impact of diagnosis, which is well established in the qualitative literature, with potential for unmet existential and spiritual needs(3). Work in North America suggests that the desire to discuss prognosis, advanced care planning and end of life decision making varies considerably among PwP, but is by no means restricted to the “palliative phase”, with around a quarter wishing to initiate these discussion in the very early stages(4). It is important that we learn how best to adapt our practice so that such discussions are possible, without imposing them on the apparently small but significant group for whom they may never be appropriate(4). The backdrop to all of this, of course, is dementia, which may limit the opportunities to fully involve PwP in decision-making, a factor which again argues against the rigid application of a linear disease model(5).
Reconsidering the palliative phase of PD is an active process and will call upon the small but rapidly growing literature on palliative care for PwP. It may be that a paradigm shift, from a linear to an integrated model of palliative care is required. If so then many questions remain to be answered including how, as clinicians working with PwP, we can develop a skill set which allows us to apply palliative approaches to care in our everyday practice and how we develop models of care which facilitate sustainable access to the specialist palliative care services from which many with non-malignant conditions are still excluded(6).
The shifts in palliative care, which apply to many chronic non-malignant conditions, and the challenges to adopting a palliative approach to everyday care, led to the inaugural meeting of the Palliative Care Academy last month. This latest branch of the Neurology Academy aims to help specialists develop their palliative care skills, and indeed for palliative care clinicians to develop their disease-specific understanding. We focusing initially on PD and dementia with a view to incorporating MS in future meetings. The programme was well received in its first iteration and as ever, is being updated according to delegate feedback – a key factor in the evolution of all branches of the Academy (dates to be published in the new year). We look forward to continued engagement with this important area of care and hope that, as MasterClass alumni, we will be in the vanguard of best practice as we reconsider the application of palliative care to chronic neurological conditions.
Find out more about the Palliative Care MasterClass
- MacMahon DG, Thomas S, Campbell S. Validation of pathways paradigm for the management of PD. Parkinsonism and Related Disorders. 1999;5:S53.
- WHO definition of palliative care 2015 [Available from: http://www.who.int/cancer/palliative/definition/en/.
- Philips L J. ￼Dropping the Bomb: The Experience of Being Diagnosed with Parkinson’s Disease. Geriatric Nursing. 2006;27(6):362-9.
- Tuck KK, Brod L, Nutt J, Fromme EK. Preferences of patients with Parkinson’s disease for communication about advanced care planning. Am J Hosp Palliat Care. 2015;32(1):68-77.
- Richfield E, Alty J, Jones E. Palliative care for Parkinson’s disease: A summary of evidence and future directions. Palliative Medicine. 2013;27(9):805-10.
- Moens K, Higginson I, Harding R. 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.