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 Parkinsons.
- Identify the challenges in practice of applying palliative and end of life care principles in Parkinsons.
- 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 Parkinsons 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.
What Causes Parkinsons Disease Dementia
A chemical messenger in the brain called dopamine helps control and coordinate muscle movement. Over time, Parkinsons disease destroys the nerve cells that make dopamine.
Without this chemical messenger, the nerve cells cant properly relay instructions to the body. This causes a loss of muscle function and coordination. Researchers dont know why these brain cells disappear.
Parkinsons disease also causes dramatic changes in a part of your brain that controls movement.
Those with Parkinsons disease often experience motor symptoms as a preliminary sign of the condition. Tremors are one of the most common first symptoms of Parkinsons disease.
As the disease progresses and spreads in your brain, it can affect the parts of your brain responsible for mental functions, memory, and judgment.
Over time, your brain may not be able to use these areas as efficiently as it once did. As a result, you may begin experiencing symptoms of Parkinsons disease dementia.
You have an increased risk of developing Parkinsons disease dementia if:
- youre a person with a penis
- youre older
Palliative Care For Parkinsons Disease
Jeffrey Sheung Ching Ng
Palliative Medicine Physician, Haven of Hope Hospital, Hong Kong, China
Abstract: Parkinsons disease is a slowly progressive multi-system neurodegenerative disorder, with no available disease-modifying treatment. The disease is associated with motor and non-motor symptoms leading to impaired quality of life, disability and significant caregiver distress. Patients with PD benefit from palliative care which provides a holistic approach to meet their multi-faceted needs, including symptom control, communication needs and caregiver support. This article would review on recent articles addressing palliative care for PD.
Keywords: Parkinsons disease palliative care prognostication motor symptoms
Submitted Sep 25, 2017. Accepted for publication Oct 26, 2017.
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Which Medications Can Make Confusion And Hallucinations Worse
As PD progresses, non-motor symptoms including psychosis and hallucinations become more prominent both for the patient and caregivers.9 Dopaminergic medication can exacerbate these symptoms and this can be reduced through a last in, first out approach. 27,28 Medications that have an anticholinergic effect also may cause or worsen acute confusion and the anticholinergic burden in the patients medication history should be considered.29
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Disease Burden And Mortality In Pd
PD is a slowly progressive multi-system neurodegenerative disorder, mainly affecting patients in later years of life . It is the second most common neurodegenerative disease worldwide, with its incidence and prevalence on the rise along with aging of the population .
The characteristic classical motor features of PD include bradykinesia, rigidity, resting tremor and postural instability. Patients with PD also suffered from multiple non-motor features including olfactory dysfunction, cognitive impairment, psychiatric symptoms, sleep disorders, autonomic dysfunction, pain and fatigue . As the disease progresses, both motor and non-motor symptoms become prominent and treatment-resistant. Advanced PD is identified by disability requiring help for the activities of daily living, presence of motor fluctuations with limitations to perform basic activities of daily living without help, severe dysphagia, recurrent falls, and dementia . Up to now there are no disease-modifying treatments that can stop or delay the disease process or mortality.
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Demographic And General Health Measures
Baseline demographic and general health predictors of mortality included age at onset or diagnosis, chronological age, male sex, body mass index and comorbid illness. For every year increase in age at onset, there was an associated increase in a range of HRs from a minimum 1.05 to a maximum 1.11 , with age ranging from 61 to 77 years of age at baseline for those who died. Multiple analyses estimated the impact of 10-year increases in age at onset on mortality, with increased HRs of 1.4 to 2.8 . Advanced chronological age or age at onset was estimated using a variety of methods, but in general found that patients with PDRD faced higher risk of death above 7885 years of age at onset. Male sex was associated with statistically significant increased HRs of 1.36 up to 2.9 compared with females RR increase of mortality of 1.7 and fivefold higher odds of death . In a retrospective repeated measures analysis, Goy et al found rapidly declining BMI was significantly associated with progression to death among patients with PDRD. A decrease in BMI was seen, from mean of 26 at 3036 months to 24.6 at 612 months prior to death. Further, an absolute BMI< 18 was a predictor of mortality.
How Can Palliative Care Help In Parkinson’s
As Parkinson’s progresses and symptoms no longer respond well to treatment, daily living and quality of life become more difficult. You and your carer may need more help to manage your symptoms and physical requirements as well as your psychological and emotional needs.
The main principles of palliative care in Parkinsons are:
- focusing on quality of life, including good symptom control
- discontinuing any unnecessary medication or inappropriate interventions such as blood tests and scans
- responding to your psychological, social and spiritual needs
- caring both for you and those close to you
- maintaining open and sensitive communication between you, your family, carer and healthcare team
- respecting the individual choices you and your family make, for example treatment options and deciding where to die.
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Developing A Holistic Approach
Utilising the principles of end of life care highlighted earlier in section 2.4 of this course, we will examine how to effectively manage and guide the person with Parkinsons, and those closest to them, through this end stage with the minimum of distress.
Promoting holistic assessment which respects the autonomy and choice of the person with Parkinsons is important and involves them in planning their end of life care through early discussions about advance care planning and Advance Decision to Refuse Treatment , as discussed in section 3.3
Holistic assessment in the end of life stage focuses on the physical, psychological, social and spiritual aspects of care for the person with Parkinsons. We will examine these in greater depth.
Apda In Your Community
APDALiving with Parkinson’sLets Talk About Palliative Care and Parkinsons disease
People with Parkinsons disease and their care partners are always searching for ways to make their lives easier, healthier and fuller. Using the principles of palliative care to enhance PD-specific care is one way to do that.
Palliative care is a medical approach for those with complex illnesses, in which the focus is on maximizing quality of life. This approach can be applied at any stage of the disease, even at the time of diagnosis. Many people with PD have experienced this type of approach from their physicians, often to a limited degree, when a treatment or therapy is added to improve quality of life. However, these small steps are often not enough and a change in the practice of PD medicine is slowly underway, with the goal of providing comprehensive and consistent palliative care throughout the disease course. In order to provide this level of care, some formal palliative care programs for PD have been developed, but more such programs are needed across the country.
Palliative care for PD typically requires a multi-disciplinary approach in which movement disorders physicians, nurses, social workers, physical therapists, occupational therapists and speech therapists work together to optimize quality of life.
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Treating The Symptoms Of Parkinsons Diseasehow Palliative Care Can Help
While there is no cure for Parkinsons disease, there are a growing number of treatments that can provide you with relief from its symptoms. People with Parkinsons disease are often prescribed a combination of levodopa and carbidopa, which helps replenish the brains shrinking supply of dopamine.
A new therapy uses electrodes surgically implanted inside the brain, and a small electrical device called a pulse generator to provide electrical deep brain stimulation . Parkinsons patients also benefit from the expertise of physical, occupational and speech therapists to help them manage practical issues in their daily lives.
Other symptoms of Parkinsons disease include a variety of motion-related issues, as well as sleep disturbances, fatigue , constipation and other gastrointestinal problems, and low blood pressure.
Another whole area of Parkinsons symptoms is called cognitive decline, whereby ravages of the disease affect thinking and other uses of the brain. These include troubling mood disorders like depression and anxiety, unclear thinking, difficulty concentrating on a task and the potential emergence of dementia.
Some people become more disabled and dependent over time despite the best treatments. They may come to need so much help with the routine tasks of living that they require 24-hour care. This care may be provided at home or in a setting like assisted living, where they get the personal care they need.
Q: Can You Give Some Examples Of How A Palliative Care Program Might Help A Person With Parkinsons
A: Patients who attend our programs Multi-Disciplinary Clinic are able to address multiple needs by seeing all of their specialists and therapists in one day. For example a patient may see their neurologist, social worker, and even their physical, occupational and speech therapists in back-to-back visits that minimizes travel and maximizes communication between the specialists. Pre-pandemic, another great benefit of this program was that we were able to provide home visits to address the medical and social needs of a patient and their family. Now, we are using technology and helping patients and families with telemedicine visits that utilize software, such as Zoom.
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Behaviors Seen In Parkinsons Disease Dementia
As dementia progresses, managing disorientation, confusion, agitation, and impulsivity can be a key component of care.
Some patients experience hallucinations or delusions as a complication of Parkinsons disease. These may be frightening and debilitating. Approximately 50 percent of those with the disease may experience them.
The best thing to do when giving care to someone experiencing hallucinations or delusions from Parkinsons disease dementia is to keep them calm and reduce their stress.
Take note of their symptoms and what they were doing before they exhibited signs of hallucinating and then let their doctor know.
This element of the disease can be particularly challenging for caregivers. Patients may become unable to care for themselves or be left alone.
Some ways to make caregiving easier include:
- sticking to a normal routine whenever possible
- being extra comforting after any medical procedures
- limiting distractions
- using curtains, nightlights, and clocks to help stick to a regular sleep schedule
- remembering that the behaviors are a factor of the disease and not the person
Stage Three: Symptoms Are More Pronounced But You Can Still Function Without Assistance
The third stage is considered moderate Parkinsons disease. In this stage, youll experience obvious difficulty with walking, standing, and other physical movements. The symptoms can interfere with daily life. Youre more likely to fall, and your physical movements become much more difficult. However, most patients at this stage are still able to maintain independence and need little outside assistance.
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Management Of Psychological Care
At the end stage of Parkinsons a high incidence of cognitive impairment and dementia is found to occur in up to 60% of people with Parkinsons after 12 years .
Wandering, sundowning, agitation and combativeness are all behavioural symptoms of dementia and can be difficult for families to manage in the community.
Early referral to the psychiatric team is important for management of the symptoms. Education of carers in behavioural management, with support from social services in delivery of care in the home, is also important.
Medications which may be used to treat dementia in Parkinsons are cholinesterase inhibitors such as rivastigmine and donepezil.
Psychosis can affect people with Parkinsons whether or not they have cognitive impairment. Visual hallucinations and delusions are the most common psychotic symptoms in Parkinsons and are quite often related to side effects of medication, so frequent reassessment of medication is important in the end stage. First rule out intercurrent medical conditions, such as constipation, dehydration or infection, which may be hidden causes of psychosis.
Agitation and delirium at end of life
At least 80% of dying people experience delirium to some degree, and this may give rise to agitation and restlessness. It is important to involve the specialist palliative care team who have the expertise to manage the delirium and support the family and/or carers .
Palliative Care As An Option
If your loved one is not eligible for hospice, the good news is that they can still receive palliative care. This type of care focuses on alleviating symptoms, discomfort, and stress associated with any illness, including PD.
The main difference between palliative care and hospice is that palliative care can be given along with standard treatments, including therapies intended to prolong life.
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Common Problems In Late Stage Parkinson’s
Parkinsons is a very individual condition and everyones experiences will be different but some of the common difficulties encountered in the late stage are:
Reduced response to Parkinson’s medication and re-emergence of symptoms – as Parkinsons medications become less effective over time, other physical symptoms may re-emerge and pain may worsen. If this happens the emphasis will be on minimising symptoms using other, more general medications. Any change in medication should always be discussed with your doctor who will monitor effectiveness or side effects on an on-going basis
Bladder and bowel problems – as Parkinsons medications become less effective, bladder control might be lost and bowel problems such as constipation may worsen. These can cause considerable distress if not carefully and sensitively managed. Your care team can prescribe various medications to help
Mobility and balance difficulties – mobility and balance may deteriorate, leading to falls and the risk of fractures. Depending on where you live, a physiotherapist and/or an occupational therapist will be able to help improve mobility and suggest strategies to minimise your risk of falling
Swallowing difficulties – a speech and language therapist will be able to help with any swallowing problem you experience. This can also help reduce the risk of aspiration pneumonia
For more information on symptoms see Symptoms.
Complications In Advanced Pd
While worsening of motor function and drug-induced motor complications represents a major challenge in patients with mid-stage to advanced disease, in the advanced stage of PD the most troublesome and distressful complications are usually nonmotor symptoms, including psychiatric and cognitive disorders, autonomic disturbances, and sleep disorders that significantly increase the need for supportive care. Unfortunately, these symptoms are frequently neglected in clinical practice due to limited consultation time, perception of the patient and caregivers that their symptoms are unrelated to the disease, or insufficient awareness of the clinicians, who generally focus on motor symptoms .
Proper supporting care becomes increasingly important in advanced PD. Rehabilitative and support services for patients and family become key interventions as the disease reaches its more debilitating stages and pharmacologic or surgical treatment becomes less relevant. Management of motor and nonmotor complications in advanced PD requires careful and ongoing assessment of whether symptoms are a side effect of medication or related to the progression of the disease .
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Parkinson’s Disease And Palliative Care
This page outlines the decline of Parkinson’s disease and helps those coping with Parkinson’s understand what a palliative care team provides. There is a brief discussion of when and how to get palliative care, an online quiz to determine if palliative care is right for your family and a link to a palliative care provider search tool.
Management Of Social Care
When someone faces diagnosis and then the progression of a life limiting condition, many psychosocial issues will arise. These may include fears around diagnosis and an uncertainty about their future, with loss of independence and losing their role within the family. They may have anxieties about finances, about their independence and finally a fear of developing dementia.
Management of these changes both physical and mental will require early identification and an impeccable assessment with prompt referral to the appropriate team or professional.
The family and/or carers will require support from social services, carer support groups and Parkinsons support groups. Signposting to charities that provide support, education and guidance is also advisable.
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What Are The Important Points Regarding Apomorphine At The End Of Life
Apomorphine is a dopamine agonist, which is given as a subcutaneous infusion either continuously or intermittently and also as single subcutaneous injections. An overview of studies into apomorphine use shows improvement in motor off periods and in dyskinesias.39
Apomorphine has side-effects similar to other dopaminergic medication but also notably nausea and vomiting. Ondansetron is not recommended for nausea in patients using apomorphine due to adverse effects.21
Subcutaneous apomorphine has been used at the end of life in a patient with advanced PD although with the recommendation that this is by a healthcare professional experienced in its use.40
What To Expect In The Late Stages Of Parkinsons Disease
The late stages of PD are medically classified as stage four and stage five by the Hoehn and Yahr scale:
- Stage Four of Parkinsons Disease In stage four, PD has progressed to a severely disabling disease. Patients with stage four PD may be able to walk and stand unassisted, but they are noticeably incapacitated. Many use a walker to help them. At this stage, the patient is unable to live an independent life and needs assistance with some activities of daily living. The necessity for help with daily living defines this stage. If the patient is still able to live alone, it is still defined as Stage Three.
- Stage Five of Parkinsons Disease Stage five is the most advanced and is characterized by an inability to arise from a chair or get out of bed without help. They may have a tendency to fall when standing or turning, and they may freeze or stumble when walking. Around-the-clock assistance is required at this stage to reduce the risk of falling and help the patient with all daily activities. At stage five, the patient may also experience hallucinations or delusions.1,2
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