3.1 Challenges of predicting end of life care in Parkinson’s

In the following video the consultant discusses the challenges of predicting end of life in Parkinson’s. In the further videos he discusses how the fluctuating nature of Parkinson’s, polypharmacy and complex invasive treatments affect the accuracy of predicting end of life in Parkinson’s.

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The end of life definition is often difficult to predict in patients with Parkinson’s . This is primarily because of the long trajectory of the illness. There are two aspects which we would normally look into, in making the end of life decision. One aspect is mental frailty where the ability to think and reason, that is involved in day-to day-activities, and physical frailty, which would mean the level of dependence on others that becomes progressively to the state that they can actually be in a nursing home level of care, would be synonymous with the end of life care, but because the illness can be so prolonged, it becomes extremely difficult to predict.

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Key challenges in predicting the end of life in Parkinson’s

  • Long duration of the condition.
  • Unpredictable and fluctuating nature of Parkinson’s. This may include infections, reactions to drug changes and gradual deterioration.
  • Specialist treatments – in the advanced stages of Parkinson’s many people with Parkinson’s may have been previously established on complex invasive treatments ie deep brain stimulation (DBS), apomorphine and Duodopa® therapy.
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The advanced therapies that we normally associate with Parkinson’s are Apomorphine pump, which is a medication that is given through a needle under the skin, or Duodopa® pump which is a medication that is given through a small tube that is inserted into the small bowel, or through a deep brain stimulator which is an electrode system planted in the brain, to help manage Parkinson’s. With advanced therapies, the therapy and treatment itself can have an impact on Parkinson’s quality of life. If I have to give you an example, with Apomorphine pump, patients can experience visual hallucinations and increased sleepiness during daytime. This can be particularly difficult to manage, but the treatment strategies that could involve potentially getting the medication dose at a reduced state can actually improve quality of life in these patients, and also reduce the care burden for these patients. The physical symptoms might suffer as a consequence of breaking down the treatment, but it can actually improve the overall quality of the patient. And we must remember, these advanced therapies like Duodopa® or deep brain stimulators are there to help support Parkinson’s management, and they do not in any way alter the course and progress of Parkinson’s itself. Hence, these advanced therapies, can sometimes be difficult to predict end of life care in these individuals.

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  • Neuropsychiatric problems – the high prevalence of cognitive impairment and dementia in Parkinson’s.
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As the disease progresses, the brain function progressively decreases. Around 60% of Parkinson’s patients, in approximately twelve years’ time, will develop dementia. The commonest form of neuropsychiatric problems that we would see, is hallucinations, like seeing children, or little animals, around the house, is what typically a Parkinson’s patient would describe. Dementia would mean that the mental capacity for day-to- day function activities would decline, and hand in hand, the physical frailty also occurs. This would be, typically: the foremost, impact swallowing abilities; frequent falls; and frequent hospital admissions; and increased level of care requirements like placement in nursing home. But even with the support of therapy, the patients can actually manage to live a few years, and it actually becomes difficult even with dementia to predict the end of life in Parkinson’s patients.

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  • Complex multidisciplinary care – due to increasing physical disability and loss of independence, medications are less effective or disabling side effects develop.
  • There can be unpredicted multiple crises, ie infection, falls and/or hospital admissions.
  • Most people with Parkinson’s will die with their condition and not from it.
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Parkinson’s, when it is present, the patients can often have other co-existing conditions. In the natural course of progress for these patients, it depends on the age in which the Parkinson’s is diagnosed, presence of other co-existing medical conditions such as stroke, or progressive heart condition, or progressive chest conditions. These all impact on the natural course of Parkinson’s disease, and it becomes extremely difficult to predict the end of life in these individuals, as Parkinson’s may not be the one that actually brings them down, the co-morbid condition is the one that can actually bring them down. Say, for example, chest conditions like pneumonia, or recurrent aspiration related chest conditions could actually bring them down. This makes it difficult to predict end of life in these individuals, but our care should be focused on providing a holistic approach for each of the individuals, not purely based on the diagnosis of Parkinson’s.

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3 Advance care planning

3.2 How do we manage the challenges of predicting end of life care in Parkinson’s?