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Healthcare professionals share their thoughts and advice to help people with Parkinson’s approach end of life preparations

As part of the EPDA’s series of articles that explores how people with Parkinson’s (PwPs) and their families prepare for end of life, we speak to a range of healthcare professionals about issues to consider.

Ana Aragon, occupational therapist and Parkinson’s UK consultant

“Some people think that because Parkinson’s is progressive, that automatically means it is terminal, but it isn’t. For example, I would say – our hair turning grey is progressive, but we die with grey hair, not of grey hair. The phase where a person with Parkinson’s (PwP) may need palliative care is not terminal, and can go on for years. So, although Parkinson’s is progressive, it isn’t terminal, and people living with the condition may die of secondary complications, or from whatever anyone else might die from.

“In the Parkinson’s clinic in our area, the consultant raises end-of-life planning with people at the point of diagnosis. It can be upsetting, but I can understand why the issue is raised at that time. The idea of preparing a will is not personal – as adults we should all do this. We are all facing the end of our life – yet it is easy to delay writing our will. Better to do it sooner rather than later!

“Focusing on people with Parkinson’s (PwPs) who are in an advanced stage, let’s consider their physical needs. This could include the PwP losing the physical benefits of medication if they’ve reached the point where the drugs are doing more harm than good. For example, if people develop Parkinson’s dementia, then medication might need to be reduced. This means the person would regain some mental clarity, but lose a lot of physical capability. Therefore, maintaining dignity and being comfortable can be a challenge that’s specific to the condition, and each case has to be assessed individually. 

“As well as physical needs, people usually need support on a psychological and mental health level. Questions should be gently asked about the person’s spiritual needs – whether they want to be in touch with ministers of religion, have some counselling, or if they just want to talk their situation over with a healthcare professional. Quite often people just want to talk through death and dying. Often, people need allaying of misconceptions in the earlier stages, when the shock of the diagnosis can lead to a person becoming preoccupied with thoughts about death.

“There are a lot of mental health and wellbeing conversations that also need to happen. It’s important PwPs are enabled to express concerns as these arise, so the available support is accessed in good time. Getting to know your team, and how to contact them, is something you can do in advance. 

“Our role as occupational therapists is also to consider the PwP’s family and informal carers, and the resources they have. Most families eventually need some sort of formal support, and there are all sorts of conversations that need to be had for end-of-life care to go well. These conversations are not easy or quick, and quite often work better in the PwP’s own home, rather than in a busy clinic environment. Preparing for end of life well isn’t just about the PwP, but includes the people around them day to day.”

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As well as physical needs, people usually need support on a psychological and mental health level. Questions should be gently asked about the person’s spiritual needs

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Fiona Lindop, specialist physiotherapist, Derby Hospitals NHS Trust, UK

“PwPs have to consider where they would like to be cared for in the later stages, while still able to make decisions, and ensure these are clearly understood and documented.

A sudden event, such as a fall and fracture, can precipitate a quick change in someone’s ability to manage their Parkinson’s and remain at home. There are several things that can indicate that a PwP is advancing towards an increased chance of going into a nursing home (and therefore, indicating the late stages of the condition). These include repeated admissions to hospitals, falls, or loss of weight.

“We find PwPs sometimes discuss this after seeing our palliative consultant or after discussing it with the Parkinson’s nurse, or consultant, but I think they often don’t talk about it except in the clinic. Making decisions early is key. When PwPs think they have lots of time beyond the decision being made, it can feel more comfortable. I often encourage people to ensure they have got their wills in place and the Lasting Power of Attorney (I think it’s still called power of attorney in Scotland) – I encourage them that we should all do this, and tell them I’ve done it myself!

“People can take some time – often years – to come to terms with the diagnosis and it’s not helpful to be focusing on these preparations too early. However, it is important to raise the subject generally, and then to ensure that it is addressed again long before a patient reaches the complex phase of Parkinson’s.”

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People with Parkinson's have to consider where they would like to be cared for in the later stages, while still able to make decisions, and ensure these are clearly understood and documented

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Dr Rob Skelly, consultant physician, Royal Derby Hospital, UK

“End-of-life preparations are challenging for everyone, and PwPs are no exception – dying is one journey we all take. In order to influence what happens, it is important to consider possible health complications, what treatments might be refused, and to communicate one’s wishes clearly to family, attorney, family doctor and others (for example, the care home manager). Dementia is actually quite common in Parkinson’s so it is important that end-of-life issues are discussed before a person loses the capacity to make these decisions.

“The support provided to PwPs varies according to the skill mix and professional interests of the doctors and nurses involved. There are probably differences too between countries and cultures. Parkinson’s specialists can help provide information about prognosis in terms of life expectancy but also in explaining about potential complications.  Communicating this information in a sympathetic way can be difficult. The Multidisciplinary Parkinson’s service in Derby, UK, includes a palliative medicine specialist who visits the clinic once a month, who can help with these discussions and also help train other members of the team.

“In my experience it is very unusual for PwPs to raise the issue. In the clinic we use some pointers that indicate the need for end-of-life care (EOLC) discussions, such as care home placement, recurrent falls, dementia, swallowing problems, recurrent chest infections, or unplanned admissions to hospital. But it is important to choose the timing of conversations carefully.

“Think of dying as a journey every one of us will make. When we go on a journey, many of us make meticulous plans and will think carefully about where we want to stay. We may check TripAdvisor. We may choose a quiet hotel or want to be in the centre of the action. If we think of dying as a journey too, we may find it easier to discuss our preferences. Making a will does not bring forward the day we die and neither does discussing our wishes around EOLC. You have a better chance of a successful journey if you have told people what you want.”

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If we think of dying as a journey too, we may find it easier to discuss our preferences. Making a will does not bring forward the day we die and neither does discussing our wishes around end of life care. You have a better chance of a successful journey if you have told people what you want

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Further reading:

Is end of life preparation an issue that affects you and your family? Have you thought about preparing for it? Is it a taboo subject or are you open to discussing it with your family? Email info@epda.eu.com and tell us your stories.

The EPDA is sharing this article for information purposes only; it does not represent the EPDA’s views and is not an endorsement by the EPDA of any particular treatments, therapies or products.

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