Reflections on end-of-life care in Idiopathic Parkinson’s Disease (IPD).

In partnership with the EAPC Neurology Reference Group, our Neurology blog series enables practitioners and researchers share their experiences in supporting people affected by neurological disease. Today’s guest writer is Dr. Mark Lee, Consultant in Palliative Care, St Benedict’s Hospice and Specialist Palliative Care Centre, Sunderland, United Kingdom.

Dr Mark Lee
Dr. Mark Lee

Since starting work as a Consultant in Palliative Care in Sunderland in 2006, I have seen a growth in the concept of what it means to provide palliative care for patients with Idiopathic Parkinson’s Disease (IPD).  Idiopathic means the cause of the illness is unknown. England’s National Institute for Health and Care Excellence (NICE) guidelines for Parkinson’s Disease in Adults (2017) highlights the importance of patient centred care; shared decision making; offering discussions around prognosis; advance care planning; and considering what could happen at the end of life. (1) Exploring these subjects in any patient group requires sensitivity and may take place over several meetings. My personal reflection in the context of IPD (where issues of cognitive impairment, bradyphrenia, and depression occur) is that we need to provide spaces where these patients have enough time and space to consider options.

Over the last 15 years, I have seen many patients with IPD who have been nearing the end of their lives. However, these patients represent a wide ranging and varied group. Some have been early in their IPD journey (less than 5 years from diagnosis) but are dying of other conditions, such as advanced cancer. They are in the ‘maintenance’ phase (2) of their IPD and as such are still likely to have a good response to Levodopa, one of the main drugs used to treat Parkinson’s. As a result, at least part of optimal symptom control at the end of life will therefore rely on finding ways to maintain their existing doses of Levodopa. Other patients I have observed are in the advanced (or ‘palliative’) stage of their IPD. They are often frail, bed bound, cognitively impaired, and are often either less levodopa responsive or have unacceptable side effects this medication. They will need an individualised Levodopa regime which is able to balance the benefits of treatment (for example, a decrease in stiffness and rigidity) versus side effects (for example, hallucinations and involuntary muscle movements called dyskinesias). Indeed wherever the patient is on the spectrum between early and late IPD, an individualised approach is vital.

The challenge of controlling IPD symptoms can be made even more difficult when a patient is unable to swallow. Guidance has been outlined in the Palliative Care Formulary version 7 (PFC7) (3) in patients with IPD who are unable to swallow and don’t have a nasogastric tube (NG) or percutaneous endoscopic gastrostomy (PEG) tube (which enables dispersible levodopa to be given to the patient). Firstly, this recommends the use of a dopamine agonist patch called Rotigotine in helping to provide comfort by reducing individual’s rigidity. An online calculator provides a way to convert existing Parkinson Disease medications which are not able to be given by mouth to an equivalent dose of Rotigotine in patch form (using the Parkinson’s Disease ‘Nil by Mouth’ Medication Dose Calculator (PDMED) calculator.

Secondly the PFC7 suggests that there may be a role for subcutaneous apomorphine (an injection given under the skin) in maintaining comfort by controlling rigidity, to be given under the supervision of a Parkinson’s Disease specialist. And finally, it highlights the potential role of Midazolam at the end of life for rigidity if uncontrolled by other means.

With regard to the use of Rotigotine patches at the end of life, a recent analysis of 100 consecutive deaths of IPD patients in a UK hospital demonstrated the widespread use of Rotigotine patches (90%) at the end of life. The analysis suggested that dose conversions to Rotigotine patches which were higher than those calculated by the PDMED online calculator tended to cause more agitation, whilst lower doses correlated with fewer symptoms. The authors also highlighted that the most prevalent symptoms which required intervention at the end of life on IPD were excess respiratory secretions, pain, agitation and fever. (4) Therefore, healthcare professionals need to be aware of options for dopamine replacement but also of the other common symptoms which may require treatment at the end of life in IPD.

Certainly more work is required to define the needs and treatments for patients dying in the context of IPD to ensure their death is as comfortable as possible.


  2. MacMahon DG, Thomas S, Campbell S.  Validation of the pathways paradigm for the management of Parkinson’s disease. Parkinsonism and Related Disorders. 1999; 5: S53.
  3. Wilcock A, Howard P, Charlesworth S. Palliative Care Formulary Seventh Edition. Published by Pharmaceutical Press. 2020; p701-702.
  4. Hindmarsh J, Lee MA, Hindmarsh S. Idiopathic Parkinson’s disease at the end of life: A retrospective evaluation of symptom prevalence, pharmacological symptom management and transdermal Rotigotine dosing. Clinical Drug Investigation 2021 Aug; 41(8):675-683.doi: 10.1007/s40261-021-01054-1. Epub 2021 Jul 2.

Links and resources

About the author:

Dr Mark Lee is a Consultant in Palliative Care based at St Benedict’s Hospice and Centre for Specialist Palliative Care, in Sunderland, UK. In 2006 he completed a Medical Doctorate looking at Palliative care needs in Parkinson’s disease patients. In his 15 years in post as a Consultant he has run a Neuro-palliative clinic which largely sees patients with movement disorders. He continues to work closely with his Neurology and Care of the Elderly colleagues in caring for these patients.


This entry was posted in EAPC Task Forces/Reference Groups, Neurology, PATIENT & FAMILY CARE, SYMPTOM CONTROL and tagged . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.