Parkinson's: managing palliative and end of life care

1 Introduction

The purpose of this course is to enhance your understanding of palliative and end of life care in Parkinson’s and to guide you through this journey alongside your client and their carers.

Palliative care is the active total care of people whose disease is not responsive to curative treatment, and involves the physical, psychological, spiritual and social aspects of their care.

End of life care involves the delivery of care during the period of time when the person’s condition is actively deteriorating, to the point where death is expected.

This course aims to improve the outcomes of this journey for all involved by encouraging early conversations about advance care planning, and the need to make decisions about treatments the client may or may not wish at the end of their life. The course highlights involvement of the multidisciplinary team and each member’s important role in supporting and managing the physical, social, psychological and spiritual needs the client and their carers may experience throughout this journey.

Health and social care professionals from various disciplines will be taking this course. We will therefore use the word ‘client’ to refer to a person with Parkinson’s who you work with. You may usually use ‘patient’, ‘resident’ or another term.

Before you commence this course think about how you will study. Not just whether you will study online or download for reading offline or on a mobile device, but how you will use the course in practice. As you progress through the course, there will be some reflective exercises. These are important to help you think about your past practice and consider if you might be able to improve this in the future.

There are quizzes at the end of each section, allowing you to assess what you have learnt. At the end of the course there is a final quiz which is a review of all the sections. You will be able to earn a digital badge if you gain a pass rate of at least 65% in the final course quiz.

Our approach

People with Parkinson’s have been involved in the decisions about the management of their condition throughout its progression. Therefore, it is important that this continues as they approach the end of life. It is essential that health and social care professionals educate clients throughout the condition’s trajectory about its progression and the possible impact in the advanced stage. This will give the client the knowledge and autonomy to make informed choices and decisions in advance about their management at the end of life, and to indicate how they would like their relatives/carers to be involved.

The following video provides you with a brief overview of this course about palliative and end of life care in Parkinson’s, and the content of the course.

Download this video clip.Video player: dot_intro.mp4
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Welcome to the ‘End of life care in Parkinson’s’ online course. This course has been designed for health and social care professionals, who already have experience working with people with Parkinson’s, but wish to enhance their knowledge of end of life care in Parkinson’s. If your knowledge and experience of Parkinson’s is limited, we suggest you first take the course ‘Understanding Parkinson’s for health and social care staff’.

The course is designed around a series of sections, which will look at different aspects of end of life care in Parkinson’s. In the first section, we will examine the UK directives that have influenced the development of palliative and end of life care in Parkinson’s, which is quite a recent development, in the management of Parkinson’s.

The second section, examines some of the challenges facing health and social care professionals when predicting and managing the end of life care of a person with Parkinson’s, due to the slowly progressive and fluctuating nature of Parkinson’s. We will discuss the importance of the introduction of principles of palliative care early in the Parkinson’s journey. This will highlight the importance of education for professionals, to enable them to have open and honest conversations about the advanced phase, and issues around advanced care planning and end of life care. We will examine the challenges of advanced care planning, the need for discussion, and documentation, of the client’s wishes, and their decisions around advance decision to refuse treatment, or deciding if they wish to name a person as their power of attorney.

The third section examines the management of people with Parkinson’s at the end of life phase. We will identify the indicators for end of life approaching, and then examine in detail the physical, psychological, social, and spiritual management of this phase. We will consider the carers, and the impact on their own health and wellbeing, recognising their needs as their care role changes as the illness progresses, especially at the end of life phase, and their continued need for support through bereavement.

By the end of the course, you will have gained a greater understanding of palliative and end of life care in Parkinson’s. You should feel confident in having open and honest conversations with your clients about their progressive, life-limiting illness, and enabling them to make decisions about their end of life care early in their disease trajectory. This course will give you the necessary knowledge to recognise the symptoms indicating end of life in Parkinson’s, and where appropriate, to support and direct the multidisciplinary team and effectively managing the client’s physical, psychological, spiritual and social care needs. We will enhance your knowledge of the importance of the carer’s role, and their needs during this advanced stage of Parkinson’s, enabling them to have the appropriate coping strategies, to manage this journey right through to bereavement.

End transcript
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Learning outcomes of the course

  • Demonstrate an understanding of the principles of palliative and end of life care and how these can be applied in Parkinson’s.
  • Identify the challenges in practice of applying palliative and end of life care principles in Parkinson’s.
  • Confidently discuss the theory of advance care planning and the issues involved, such as power of attorney or advance decision to refuse treatment.
  • Identify symptoms which indicate the end of life phase in Parkinson’s and highlight the issues in management of this phase.
  • Be aware of the family/carers of the client and their needs throughout the end of life phase through to bereavement.


You can download these files for use offline or on a mobile device.

The materials below are provided for offline use for your convenience and are not tracked. If you wish to save your progress, please go through the online version.

1.1 Why are we here?