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.

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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 and/or carers of the client and their needs throughout the end of life phase through to bereavement.

1.1 Why are we here?