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End Of Life Parkinson’s Disease

What To Expect In The Late Stages

Parkinsons Disease and End of Life Care

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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Addressing Needs Of Persons With Pd And Family Caregivers

One of the key issues in late-stage PD is that the persons needs and wishes can be difficult to elicit due to communication problems and/or cognitive decline . A number of respondents cited that not speaking timely about needs might complicate treatment. In some cases, when the person with PD could not understand the purpose of a proposed treatment, it was hard to tell whether the treatment might be too burdensome. Health care professionals mentioned that they were not certain about what persons with PD themselves want. Early discussions about wishes was seen as a facilitator for improving palliative care . A barrier that was mentioned by a few HCP was that a PD trajectory is less predictable than for example for cancer. Persons with PD might be focusing on stabilizing instead of their general decline . HCP emphasized the urgency of timely speaking about wishes and needs as it might enable them to provide future care that is based on a persons needs. However, timely was not well defined. On the other hand, HCP argued that in some cases persons were not open for having these conversations.

What Challenges Can People With Parkinsons Experience Later In Life

As Parkinsons disease is a progressive condition with variable motor and non-motor symptoms, patients may face considerable problems in late stages. Impairment of functions that are difficult to manage may bring limitations in daily activities and increase dependence.

The problems in later stages of Parkinsons disease include worsening walking disorders, with postural impairment and falls speech and swallowing disorders and progressive functional disability in the hands. They can also include non-motor issues, which may have a negative impact on quality of life including fatigue and sleep problems with restless legs or REM sleep disorder, bladder problems and constipation, drooling and orthostatic episodes, mood and behavioural disorders, hallucinations and cognitive impairment.

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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.

Which Medications Can Make Confusion And Hallucinations Worse

End Stage Parkinson

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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What Are The Principles Of End Of Life Care

These principles are useful to guide health and social care professionals in the delivery of best practice, high quality end of life care for people with Parkinsons.

Principles of end of life care

A focus on quality of life involves good symptom control, relief from pain and other distressing symptoms.

A whole person approach takes into account the persons past life experience and current situation.

The care of people with Parkinsons and those who matter to that person promotes an awareness of the needs of the family and/or carer due to major changes in their life.

Respect for the person with Parkinsons and their autonomy and choice recognises that timely information promotes educated choices about treatment options, and allows discussion about advanced care documents and preferred place of care.

Open and sensitive communication will prompt discussion on advance care planning issues, personal feelings and family relationships. It is important that family and/or carers have their opportunity to express their feelings too.

Reflective exercise

Reflect on these principles of palliative and end of life care within your care setting. In your reflection log, record the key words that you believe summarise how you would approach palliative and end of life care.


In your reflection you may have considered the following:

Multidisciplinary team approach the skill mix of the team will be used to manage the clients and their familys needs.

Therapeutic Management Of Late

, December 12, 2011

This review of the Movement Disorder Societys guidelines for therapeutic management of late-stage Parkinsons applies the guidelines to a case scenario. The guidelines first appeared in the European Handbook of Neurological Management. This review cites the Annals of Long-Term Care: Clinical Care and Aging, 2011 19 : 42-46.

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A Guide To Understanding End

Crossroads Hospice & Palliative Care created guidelines to help family caregivers better understand the physical changes of the end-of-life process, as well as the emotional and spiritual end-of-life changes taking place.

The following describes the physical symptoms you may observe. Here are end-of-life signs and helpful tips:

  • Coolness. Hands, arms, feet, and legs may be increasingly cool to the touch. The color of the skin may change and become mottled. How you can help: Keep the person warm with comfortable, soft blankets.
  • Confusion. The patient may not know time or place and may not be able to identify people around them. How you can help: If this end-of-life sign is occurring, Identify yourself by name before you speak. Speak normally, clearly, and truthfully. Explain things such as, Its time to take your medicine now. Explain the reason for things, such as, So you wont start to hurt.
  • Sleeping. An increasing amount of time may be spent sleeping. The person may become unresponsive, uncommunicative, and difficult to arouse. How you can help: Sleeping more frequently is normal. You can sit quietly with them. Speak in a normal voice. Hold their hand. Assume they can hear everything you say. They probably can.
  • Incontinence. They may lose control of urinary/bowel functions. This is a common end-of-life change that can occur during the process of passing on. How you can help: Keep your loved one clean and comfortable. Ask your hospice nurse for advice.
  • The Stages Of Parkinsons Disease

    Parkinson’s Progression Palliative and End of life issues

    Stage OneThe 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 TwoBoth 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 ThreeIncreased 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 FiveThe 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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    What Is An Advance Decision To Refuse Treatment

    During the course of an individuals advance care planning discussion they may indicate that they wish to make an advance decision to refuse certain treatments.

    This is a separate document to that of the ACP and must be instigated by a professional who is competent in this process. They are required to follow the guidance available in the Code of Practice for the Mental Capacity Act on Advance Decision to Refuse Treatment in England, Wales and Northern Ireland. In Scotland professionals must follow guidance available in the Adults With Incapacity Act .

    • An Advance Decision to Refuse Treatment allows the person who is 18 years of age or over to specify what treatments they would not want and would not consent to later in life. In Scotland the age of advanced directives is 16. They cannot demand certain treatments or refuse basic care, ie offers of food and water by mouth, warmth, shelter and hygiene. But clinically assisted nutrition and hydration given by intravenous, subcutaneous or gastroscopy are considered medical interventions and can be refused. These decisions can be withdrawn if the individual gains or retains capacity.
    • All healthcare providers must respect the individuals advance decision and ensure it is incorporated into the person-centred care planning. They will also have discussed who is to be made aware of the ADRT and where they wish to store it in the home. A copy of the document should be stored in their healthcare notes and their GP made aware.

    How Is Parkinsons Disease Diagnosed

    Diagnosing Parkinsons disease is sometimes difficult, since early symptoms can mimic other disorders and there are no specific blood or other laboratory tests to diagnose the disease. Imaging tests, such as CT or MRI scans, may be used to rule out other disorders that cause similar symptoms.

    To diagnose Parkinsons disease, you will be asked about your medical history and family history of neurologic disorders as well as your current symptoms, medications and possible exposure to toxins. Your doctor will look for signs of tremor and muscle rigidity, watch you walk, check your posture and coordination and look for slowness of movement.

    If you think you may have Parkinsons disease, you should probably see a neurologist, preferably a movement disorders-trained neurologist. The treatment decisions made early in the illness can affect the long-term success of the treatment.

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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.

    Managing Advanced Parkinsons Disease

    1000+ images about Parkinsons on Pinterest

    Module 13 of a continuing education course on Parkinsons disease for health care professionals outlines the complications of advanced of Parkinsons disease. Topics covered include medication issues, motor issues, nonmotor complications, sleep disorders, orthostatic hypotension, severe dysphagia, gastric dysfunction, constipation and urinary problems, managing falls, malnutrition and dehydration, impaired communication and the benefit of palliative care and hospice at home over nursing home care.

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    I Decline In Clinical Status Guidelines

    These changes in clinical variables are listed in order of their likelihood to predict poor survival, the most predictive first and the least predictive last. No specific number of variables must be met, but fewer of those listed first and more of those listed last would be expected to predict longevity of six months or less.

  • Progression of disease as documented by worsening clinical status, symptoms, signs and laboratory results
  • Clinical Status
  • Recurrent or intractable infections such as pneumonia, sepsis or upper urinary tract.
  • Progressive inanition as documented by:
  • Weight loss not due to reversible causes such as depression or use of diuretics
  • Dysphagia leading to recurrent aspiration and/or inadequate oral intake documented by decreasing food portion consumption.
  • Dyspnea with increasing respiratory rate
  • Cough, intractable
  • Nausea/vomiting poorly responsive to treatment
  • Diarrhea, intractable
  • Pain requiring increasing doses of major analgesics more than briefly.
  • Venous, arterial or lymphatic obstruction due to local progression or metastatic disease
  • Change in level of consciousness
  • Increasing pCO2 or decreasing pO2 or decreasing SaO2
  • Increasing calcium, creatinine or liver function studies
  • Increasing tumor markers
  • Progressively decreasing or increasing serum sodium or increasing serum potassium
  • Increasing emergency room visits, hospitalizations, or physicians visits related to hospice primary diagnosis
  • 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

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    The Last Year Of Life In Parkinsons Disease

    The study also examined nearly 45,000 hospitalizations in people with terminal Parkinsons, meaning their end-of-life period.

    Of those with terminal PD, the most common reasons for being in the hospital were:

    • Lung disease that was not from an infection

    Less common causes for hospitalization were problems related to the stomach or intestines, muscles, nervous system, or endocrine system .

    It is not surprising that infection was the most common hospitalization before death, as people with Parkinsons are vulnerable to developing a number of infections as a result of their disease. For example, bladder dysfunction in Parkinsons increases a persons risk of developing urinary tract infections, which can become life-threatening if not detected and treated promptly.

    In addition, research suggests that aspiration pneumonia is 3.8 times more common in people with Parkinsons as compared to the general population. It has also been consistently reported to be the main cause of death in people with Parkinsons.

    Aspiration pneumonia results from underlying swallowing difficulties, which leads to stomach contents being inhaled into the lungs. Immobilization and rigidity, which can impair phlegm removal, also contribute to the development of pneumonia in people with Parkinsons.

    Days To Hours Prior To Death

    Advanced Parkinson’s Care Planning: Palliative Care, Hospice, and End-of-Life Decisions

    Sometimes, the last couple of days before death can surprise family members. Your loved one may have a sudden surge of energy as they get closer to death. They want to get out of bed, talk to loved ones, or eat food after days of no appetite.

    Some loved ones take this to mean the dying person is getting better, and it hurts when that energy leaves. Know that this is a common step, but it usually means a person is moving towards death, rather than away. They are a dying persons final physical acts before moving on.

    The surge of energy is usually short, and the previous signs return in stronger form as death nears. Breathing becomes more irregular and often slower. Cheyne-Stokes breathing, rapid breaths followed by periods of no breathing at all, may occur. So may a loud rattle.

    Again, these breathing changes can upset loved ones but do not appear to be unpleasant for the person who is dying.

    Hands and feet may become blotchy and purplish, or mottled. This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple, and lips may droop.

    The person usually becomes unresponsive. They may have their eyes open but not see their surroundings. It is widely believed that hearing is the last sense to leave a dying person, so it is recommended that loved ones sit with and talk to the dying loved one during this time.

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