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End Of Life For Parkinson’s Patients

What Is The Definition Of Palliative Care

Parkinsons Disease and End of Life Care

The word palliative derives from the Latin pallium, meaning cloak or covering. It is reflected in the Middle Eastern blessing: May you be wrapped in tenderness, you my brother, as if in a cloak.

We could use the word cloak to symbolise the holistic care we aim for, which encompasses the physical, psychological, social and spiritual aspects of care, and is highlighted in the following definition of palliative care:

Palliative care is an approach that improves the quality of life of patients and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.

The early development of the palliative care ethos was synonymous with cancer care, but as research in palliative care developed it became recognised that people living with life limiting, non-malignant illness had as many complex care needs as those suffering with cancer. The recognised definition of palliative care devised by the World Health Organization was therefore revised to incorporate the care of those with life limiting illnesses.

Further reading

The trajectory of Parkinsons is variable and complex, making it essential that each person is assessed regularly by the multidisciplinary team and their changing needs are managed on an individual basis.

2.2.1 Dynamic model of palliative care services

Reduced Dopamine Shown To Impact Activity In Brain Motor Cortex

Parkinsons disease is characterized by the loss of neurons that make the neurotransmitter dopamine. Treatment with levodopa a precursor to dopamine has long been one of the mainstays for Parkinsons patients. However, this medicine can lead to uncontrollable movements, a condition called levodopa-induced dyskinesia.

Carbidopa helps prevent the breakdown of levodopa, so more of it is available to the brain to make dopamine. This reduces the amount of levodopa that needs to be administered, easing side effects such as nausea and vomiting.

AbbVies Duodopa called Duopa in the U.S. is a combination of levodopa and carbidopa given over 16 hours via a tube that is surgically inserted into the intestines of people with advanced Parkinsons who are experiencing dyskinesia.

The therapy was first approved across Europe in 2005, with regulatory approval following in the U.S. in 2015.

However, the impact of dyskinesia and how it correlates with other measures, such as health-related quality of life , activities of daily living , and pain, in patients with advanced Parkinsons disease remains poorly described.

To learn more, researchers conducted a post-hoc analysis a statistical analysis specified after the data were seen of patients enrolled in the DYSCOVER Phase 3 study that assessed the effectiveness of Duodopa in lessening dyskinesia versus an optimized medical treatment.

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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What Is The Definition Of End Of Life

Patients are approaching the end of life when they are likely to die within the next 12 months. This includes patients whose death is imminent and those with:

a) advanced, progressive, incurable conditions

b) general frailty and co-existing conditions that mean they are expected to die within 12 months

c) existing conditions if they are at risk of dying from a sudden acute crisis in their condition

d) life threatening acute conditions caused by sudden catastrophic events.

It is difficult to find a definition that fits all possible life limiting conditions, and in the case of Parkinsons, in which the progression is slower, fluctuates and is at times unpredictable.

It is argued that using the surprise question Would I be surprised if the person in front of me were to die within the next six months to a year? would not be appropriate and is not taking into account the palliative phase of approximately two years prior to death for people with Parkinson’s.

In the following film, Dr Vas Krishnaswami discusses the challenges of using the surprise question in Parkinsons.

To overcome these difficulties some professionals argue that there is a need to avoid traditional prognosis-based approaches for end of life care referrals, and instead to focus on the person, their experiences of their life limiting condition and their present needs. We will find that the principles of end of life care incorporate this point of view.

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

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Management Of The End Of Life Phase In Parkinsons

In the previous section, we explored some of the challenges of managing and predicting the end of life in Parkinsons, highlighting the need for advance care planning.

In this section, we take a more detailed look at the management of the end of life phase of Parkinsons. Taking a holistic approach, we look in depth at the management of the physical, psychological, spiritual and social aspects of end of life care. We will highlight the importance of including and supporting the family or those closest to the person with Parkinsons throughout this end of life phase, and working with the multidisciplinary team to meet their needs.

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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Recognising The Needs Of Carers

Caring for a person with Parkinsons, a long-term progressive condition, can be overwhelming and research has documented that carer burden may result in depression, stress, fatigue and even mortality .

Research indicates that carers for people with Parkinsons play an important role in the end of life care and death at home. Research also reveals unmet palliative care needs such as lack of information, ad hoc delivery of services and carers being unprepared for the stress and physical strain encountered at the advanced stage, and some carers being unprepared for death .

Carers of people with Parkinsons have been found to have fewer social contacts, fewer opportunities to socialise and tend to experience poor health. Changes in relationships, conflicting needs of the person and carer, communication problems, financial problems and fears about the future are all common issues experienced by carers of people with Parkinsons.

Reflective exercise

Use your reflection log to reflect on the following case study and identify the needs of the carer. In your reflection identify how to meet these needs.

Case study

Mr Thompson is an 86-year-old man who was diagnosed with Parkinsons 15 years ago. He is married and lives with his 80-year-old wife, who is his main carer.

Mrs Thompson has found this very stressful. Due to her age and personal ill health she has been finding it more difficult to manage her husband at home.


4.8.2 Bereavement care

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Lewy Body Dementia Vs Parkinsons Disease Dementia

Diagnoses of Lewy body dementia include dementia with Lewy bodies and Parkinsons disease dementia. Symptoms in both of these diagnoses can be similar.

Lewy body dementia is a progressive dementia caused by abnormal deposits of a protein called alpha-synuclein in the brain. Lewy bodies are also seen in Parkinsons disease.

The overlap in symptoms between Lewy body dementia and Parkinsons disease dementia include movement symptoms, rigid muscles, and problems with thinking and reasoning.

This seems to indicate that they could be linked to the same abnormalities, though more research is needed to confirm that.

The later stages of Parkinsons disease have more severe symptoms that may require help moving around, around-the-clock care, or a wheelchair. Quality of life can decline rapidly.

Risks of infection, incontinence, pneumonia, falls, insomnia, and choking increase.

Hospice care, memory care, home health aides, social workers, and support counselors can be a help in later stages.

Parkinsons disease itself isnt fatal, but complications can be.

Research has shown a median survival rate of about

The Stages Of Parkinsons Disease

Stage One The Initial Stage: Symptoms are generally mild and may be easier to hide. Common symptoms include tremors, poor posture, balance issues, stooping of the back, and shaking of the limbs.

Stage Two Both Sides of the Body are Affected: The Parkinsons now affects both sides of the body, with increased symptoms that are more noticeable. Daily tasks become more difficult as symptoms now affect the entire body. It is harder to maintain your balance, walking becomes more difficult and tremors/shaking is more frequent.

Stage Three Increased symptoms & overall slowing down: By stage 3 the typical symptoms are more pronounced and the list of symptoms becomes more inclusive. One of the most noticeable changes is that movements and actions are much slower including facial expressions, speech, and motor skills. It is common to common to feel light headed, fainting, and experience hypo-tension .

Stage Five The Final Stage: During the final stages the person will require 24/7 one on one care and nursing skills. By stage 5, hospice care for late stage Parkinsons is a necessity and will help everyone involved with the acceptance of the final stage of the disease.Our trained hospice providers will guide you through these final stages. Our goal is to focus on the patient and the family unit as a whole.

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Starting Palliative Care In Patients With Pd

Patients with PD benefit early from palliative care in view of the impact of the disease impairing autonomy and quality of life. The provision of palliative care in patients with PD focuses on unmet needs and should be aligned with patient priorities. It is recommended that a palliative care approach should be applied from the early phase, throughout the course of the disease, complementing but not replacing other treatments . However, like other patients with chronic neurological condition, the individual needs may vary over time, therefore it is suggested that a model of dynamic involvement of palliative care services should be adopted . The services can be triggered at times of particular symptoms or psychosocial issuessuch as the start of new interventions or at the very end of life.

For patients with complex physical, social, psychological and/or spiritual needs that do not respond to simple or established protocols of palliative care, there should be access to the support from specialist palliative care service .

However, rate of use of hospice in PD patients has been low . Caregivers often considered palliative care services to be synonymous with hospice care, and hence they did not consider this service option . Health care workers also have uncertainty about timing of palliative care, such that it was often not introduced until a crisis point .

How To Help Your Loved Oneand Yourselfcope

1000+ images about Parkinsons on Pinterest

It’s terrible to learn that a loved one is reaching the end of their life. But knowing what to expect can make you more prepared for what will happen.

If you’ve hired hospice professionals , they can help make your loved one’s last months, weeks, and days as comfortable as possible. They can also support you as you go through this difficult time.

This article will discuss 12 signs that a person is nearing the end of their life. It also suggests ways you can help your loved one cope with the final stages.

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How To Manage Symptoms At The End Of Life

At the end of life, good practice is to plan for any potential symptoms that may arise. The most common symptoms anticipated are pain, dyspnoea, nausea and vomiting, agitation, anxiety, delirium and noisy respiratory secretions.18 For patients with PD particular considerations should be given to the more commonly used medicines, specifically anticholinergics and antidopaminergics. These are usually prescribed for treatment of respiratory secretions and nausea and vomiting. Alternatives are available for respiratory secretions, and include glycopyrronium, in preference to hyoscine hydrobromide. Although this is an anticholinergic, only a small proportion crosses the blood brain barrier.

For nausea and vomiting, ondansetron,19 cyclizine, domperidone have all been suggested in PD.20 However, ondansetron has been shown to be inferior to domperidone in the pre-treatment of apomorphine.21 Cyclizine has anticholinergic properties and may exacerbate confusion, especially when comorbid psychosis or cognitive impairment are present. Levomepromazine, although it has antidopaminergic effects, has been shown to be effective for nausea with rotigotine in a case report.22

Agitation, dyspnoea and pain can all be managed with the same anticipatory medications as recommended.20 Specifically relating to PD, several case reports have supported the intraoperative use of midazolam, during sedation, for tremor and dyskinesias,23,24 as well as for agitation at the end of life.20

Palliative Care In Parkinson’s Disease

In the absence of any curative treatment, the principles of palliative care should be applied throughout the course of the disease and not limited to the terminal end-of-life period. This chapter defines palliative care and discusses the palliative phase of Parkinson’s disease, palliative carers, care homes, social costs, withdrawl of drugs, pressure ulsers, end-of-life issues, recommendations and ethical issues.

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Burden And Demographic Disparities Of Ltnf In Pd

We identified 469,055 Medicare beneficiaries aged 65 years and older who had a diagnosis of PD recorded in the year 2002. Twenty-four percent had claims consistent with residence in an LTCF. Compared with community-dwelling patients with PD, LTCF residents with PD were older and more often female . These sex and age differences are similar to those found in the general LTCF population, which consists mostly of women and individuals aged 75 years and older .,

Studies have also reported that minorities are underrepresented in the general nursing home population, with black persons having 25% to 50% lower LTCF utilization rates than white persons., We found that African Americans with a PD diagnosis were relatively overrepresented in the LTCF population . Hispanic individuals were more common in the community PD population .

Learning Outcomes Of The Course

Parkinson’s Progression Palliative and End of life issues
  • 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.

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What Are The Symptoms Of End

Stage four for Parkinsons disease is often called advanced Parkinsons disease because people in this stage experience severe and incapacitating symptoms. This is when medication doesnt help as much and serious disabilities set in.

Theres an increased severity in:

  • How you speak a softer voice that trails off.
  • Falling and trouble with balance and coordination.
  • Freezing a sudden, but temporary inability to move, when you start to walk or change direction.
  • Moving without assistance or a wheelchair.
  • Other symptoms such as constipation, depression, loss of smell, low blood pressure when going to stand up, pain, and sleep issues.

Many times someone with advanced PD cant live on their own and needs help with daily tasks.

Stage five is the final stage of Parkinsons, and assistance will be needed in all areas of daily life as motor skills are seriously impaired. You may:

  • Experience stiffness in your legs. It may make it impossible to walk or stand without help.
  • Need a wheelchair at all times or are bedridden.
  • Need round-the-clock nursing care for all activities.
  • Experience hallucinations and delusions.

As Parkinsons disease progresses into these advanced stages, its symptoms can often become increasingly difficult to manage. Whether you or your loved one with end-stage Parkinsons lives at home, in an assisted living facility or a nursing home, hospice services can optimize your quality of life and that of your family members as well.

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