Submission on the Needs of People with Neurological Conditions for Pal iative Care and End of Life

The Neurological Al iance of Ireland is the umbrel a group representing over thirty charities workingwith people with neurological conditions and their families. Over 700,000 people are living with aneurological condition in Ireland. 1 The issue of end of life care is of huge relevance for thispopulation. Many neurological conditions are progressive and life limiting, with many individualsexperiencing greater levels of disability and symptomatology as the condition progresses. Inaddition, there are issues in relation to capacity and the ability to make decisions about their care.
The Neurological Al iance made a detailed submission on end of life issues for people withneurological conditions to the End of Life Forum organised by the Irish Hospice Foundation in 2009.
A number of NAI member groups also made submissions in relation to end of life issues for peoplewith multiple sclerosis, Huntington’s disease and dementia. The Irish Hospice Foundation is amember of the Neurological Al iance of Ireland and the two organisations are currently engaged in aresearch study to examine the pal iative care needs and experiences of people with neurologicalconditions from the perspective of these individuals and their families and of a number of NAImember organisations working with them.
There is increasing recognition of the needs of people with neurological conditions and their familiesfor palliative care and end of life supports. The Neurological Al iance of Ireland is committed toexploring and highlighting this issue with the aim of ensuring that these individuals receive theunderstanding and support required.
Executive Summary
People with neurological conditions have significant needs for physical and psychological supporttowards the end stages of their condition. There are specific challenges presented to palliative careservices by people with neurological conditions due to their need for specialist interventions andtreatment, the challenge of co-ordinating palliative care approaches over a range of services andproviders and unique features of neurological disease such as the need for palliation to commenceat earlier stages and the fluctuation in the progression associated with certain neurologicalconditions.
1 The Future for Neurological Conditions in Ireland: A challenge for healthcare; an opportunity for change.
Neurological Alliance of Ireland 2010.
There is a dearth of reports on the experience of people with neurological conditions in Ireland interms of their needs and experiences in relation to pal iative care and end of life support. However,extrapolating from research into specific conditions and reports from patient organisations indicatesthe need for a range of measures that need to be put in place.
This submission outlines a series of recommendations in relation to: 1. The need to promote and support research into palliative care and neurological conditions in Ireland, including the needs of this population, current patterns of service use andinteraction with services, mapping of existing supports and research into initiatives that areeffective in working with people with neurological conditions and their families.
2. The need to develop a policy framework to address the palliative care needs of people with neurological conditions and integrate this into existing services. The clinical programmesprovide an opportunity to support the development of the important interface of neurology,rehabilitation and palliative care by developing pathways and guidelines for themanagement of palliative care and end of life needs of people with neurological conditions.
3. The need to develop a range of specialist services including addressing capacity issues in neurology and neurorehabilitation services which are vital in the delivery of palliative careand interfacing with palliative care services. There is also a need to address awareness,understanding and training among service providers around palliative care and end of lifeissues for people with neurological conditions and their families. Family carers provide thesubstantial majority of care to people with progressive neurological conditions. Training forcarers in appropriate skil s such as lifting, administration of treatments, feeding etc isneeded.
4. The need to address the requirements of people with neurological conditions and their families for information and support around the legal, financial, emotional, future planning,bereavement and aftercare aspects of their condition and to recognise and support the vitalrole of patient organisations in this regard.
Main Submission
Neurological Conditions in Ireland
Over 700,000 people are affected by neurological conditions, affecting the brain and spinal cord, inIreland. Many of these are long term chronic conditions, some resulting in progressive disability overtime and the loss of physical and intel ectual function as wel as changes in behaviour andpersonality. The Neurological Al iance in the UK estimates that 2% of the population are disabled asa result of their neurological condition while 33% of people living in residential care have aneurological condition.
A number of neurological conditions require consideration of end of life issues and the need forpalliative care: -Rapidly progressing fatal neurological conditions such as CNS tumours or motor neurone disease -Life shortening, progressive neurological diseases in the advanced stages, e.g. multiple sclerosis,Parkinson’s disease – -Acute neurological il ness with poor prognosis -Palliative care needs among people with long term progressive neurological conditions may bepresent from diagnosis but people with multiple sclerosis, Parkinson’s disease and Huntington’sdisease may live for as many as 15 to 25 years after diagnosis. In contrast, people with motorneurone disease may live for only a few months, with very rapid deterioration.
What is Pal iative Care?
What is Palliative Care? The World Health Organization describes palliative care as an approach thatimproves the quality of life of individuals and their families facing the problems associated with lifethreatening il ness, through the prevention and relief of suffering by means of early identificationand impeccable assessment and treatment of pain and other problems, physical, psychosocial andspiritual. Palliative care is defined as care that: -provides relief from pain and other distressing symptoms; -affirms life and regards dying as a normal process; -intends neither to hasten nor postpone death; -integrates the psychological and spiritual aspects of patient care; -offers a support system to help patients live as actively as possible until death; -offers a support system to help the family cope during the patients il ness and in their ownbereavement; -uses a team approach to address the needs of patients and their families, including bereavementcounsel ing, if indicated; -wil enhance quality of life, and may also positively influence the course of il ness; -is applicable early in the course of il ness, in conjunction with other therapies that are intended toprolong life, such as chemotherapy or radiation therapy, and includes those investigations needed tobetter understand and manage distressing clinical complications.
Pal iative Care and End of Life Care for People with Neurological Conditions
There are a number of characteristics of neurological conditions which require specificconsideration: 1. The long duration of the disease in some neurological conditions2. Sudden death in relation to certain conditions3. Lack of a predictable or fluctuating course in some conditions4. Complex multidisciplinary care in the management of neurological conditions, requiring co- ordination a number of professionals and agencies in relation to identifying and meetingneeds for palliative care and end of life support 5. Specialist treatments (such as deep brain stimulation) can address disabling symptoms for people with advancing neurological disease 6. Neuropsychiatric problems: Issues of cognitive and behavioural effects of the condition require understanding and specialist support from people involved in their care 7. Rapidly progressing neurological conditions may need palliative care early on 8. Many people die but not directly as a result of their neurological condition9. Neurological conditions are widely variable in their progression, even in the same condition, making planning for End of Life Care challenging2.
Specific Issues in relation to Pal iative Care and End of Life Support for People with Neurological

The advanced stages of progressive neurological il ness can in some cases lead to impairment ofcognitive functioning, ranging from memory loss to difficulty in comprehending information anddecision making. There is a need for sensitive communication in recognition of these deficits. Arange of techniques such as frequent repetition, concrete rather than abstract information andavoiding complex or long explanations can be used.
Some neurological conditions can alter brain functioning to produce changes in personality andbehaviour. These can range from depression to increased passivity and neglect of personal care toanxiety and distress and emotional lability. Depression can be caused by organic changes to thebrain as wel as the reaction to their disability. Understanding and learning to manage thesebehaviours is very important both for family members and staff involved in the care of theseindividuals. Cognitive and personality changes in a person with a neurological condition placesignificant burden on families which has been shown to have a cumulative effect over time. Supportand training for carers in the management of these changes is critical.
Neurological conditions can result in communication problems such as dysphasia, dysarthria andcognitive speech disorders which can affect the ability of these people to communicate.
Understanding of their needs and use of assistive devices for communication are required Cognitive impairment or changes in the mental health of people with neurological conditions maymake health professionals and others in charge of the care of people with neurological conditionsconcerned about the person’s ability to make sound decisions. In all cases, every effort must bemade to ensure that the person with a neurological condition is involved as much as possible indecisions about their care. This may require supportive decision making, where alternatives areoutlined in a way that the person can clearly comprehend, weigh up the information and make aninformed choice. Information should be given in an appropriate medium and language and takeaccount of any communication or comprehension difficulties.
2 End of Life Care in Long Term Neurological Conditions: A framework for implementation. The National Council of Palliative Care and Neurological Alliance UK 2008 The Assisted Decision Making (Capacity) Bil is to replace the wards of court system in Ireland, with amodern framework governing decision-making on behalf of persons who lack capacity. Under theproposals: (a) It wil be presumed that a person has capacity; (b) No intervention is to take placeunless it is necessary, having regard to the needs and individual circumstances of the person,including whether the person is likely to increase or regain capacity; (c ) A person wil not be treatedas unable to make a decision unless all practicable steps to help him to do so have been takenwithout success; (d) A person is not to be treated as unable to make a decision merely because hemakes an unwise decision; (e) Any act done or decision made under this Bil must be done or madein the way which is least restrictive of the person’s rights and freedom of action; (f) Due regard mustbe given to the need to respect the right of a person to his dignity, bodily integrity, privacy andautonomy; (g) Account must be taken of a person’s past and present wishes, where ascertainable;(h) Account must be taken of the views of any person with an interest in the welfare of a person wholacks capacity, where these views have been made known; (i) Any act which is done or any decisionmade under this Bil for or on behalf of a person who lacks capacity must be done or made in hisbest interests.
The Bil also provides that a person is entitled to supportive decision-making. The person must, so faras is reasonably practicable, be permitted to participate, or to improve their ability to participate, asful y as possible in any act done for them and any decision affecting them. The NAI is concerned thatproper support needs to be given to enable supportive decision making by people with neurologicalconditions and the use of substitutive decision making only where necessary. Clear guidelines mustbe available to those working with people with neurological conditions around determining capacityto consent. The provision of appropriate advocacy supports in this area is very important.
The Bil also provides that a medical practitioner who performs any act in connection with thepersonal care, health care or treatment of another person whose decision making capacity is indoubt, must take reasonable steps to establish whether the person lacks capacity in relation to thematter in question and when carrying out the treatment, reasonably believe that the person lackscapacity in this manner and that the intervention is in their best interest.
Where a person has been found to lack capacity, a personal guardian can be appointed by the HighCourt or the Circuit Court to make decisions concerning his personal welfare or property and affairs.
The Bil wil also establish an independent Office of Public Guardian to supervise persons appointedby the courts to perform guardianship or other decision making functions on behalf of peopledeemed to lack capacity.
This legislation is of substantial relevance to the welfare of people with neurological conditionswhere cognitive changes as a result of the condition impact on their ability to make decisions abouttheir care. The Bil has the potential to ensure that these individuals are facilitated as far as possiblein making decisions and where this is not possible, those in charge on their behalf are ensured to bedoing so in their best interest and under due supervision. The NAI is concerned that supportivedecision making is facilitated as far as possible by practitioners with an appropriate understanding ofthe effects of neurological conditions and that those making decisions on behalf of people withneurological conditions are sufficiently informed to make such decisions.
5. Physical Symptoms relating specifically to the neurological disease Neurological conditions can result in a range of physical symptoms depending on the type ofneurological condition, the stage of progression and the area of the brain affected. These symptomscan include: Many of these symptoms wil require ongoing management by health professionals and care staff toprevent complications and reduce discomfort as much as possible. For example, lack of accessibledieticians or nutritionists can have a significant impact on patients with swallowing difficulties, whennot addressed properly this may result in malnutrition or pneumonia. There is great diversity ofneeds among people with people with neurological conditions. For example, symptoms related todifferent conditions and within conditions vary greatly, and in terms of those experienced by eachperson over time. Patients often suffer several recurring symptoms, which arise and then disappearpartially or completely, only to be replaced by a different symptom or group of symptoms.
A person with a Long Term Neurological Condition should be referred to specialist palliative careservices if they have: -a limited lifespan – usually 6–12 months, and/or distressing symptoms – especial y pain, nauseaand vomiting, breathlessness, which fall within the remit of the palliative physician, and/or a need ordesire for end-of-life planning, with or without competence issues.
A person who is dying from an LTNC should have timely and ongoing access to specialist pal iativecare services which include: symptom control, planning and support to the end of their life, aftercareand bereavement support for their families3. 6. Meeting the needs of the Individual with Slower Progression of the Condition In some neurological conditions, the slow progression of the disease can present unique challengesfor the individual and their family. People may receive a diagnosis while in good health and realisethat they have little control or knowledge of when their condition wil deteriorate. For families, theremay be a much extended period of time when they need to provide increasing levels of care andreliance on health services. Most studies on carers of people with disabling neurological diseaseshow a cumulative impact on the carer over time, with those caring for longer periods at increasedrisk of health problems and reporting greater levels of burden and distress.
Many of the issues in relation to planning for end of life wil be similar for any il ness with a negativeprognosis. People with neurological conditions face unique challenges in that they may receive their 3 (Long Term Neurological Conditions and management at the interface between neurology,rehabilitation and palliative care. National guidelines issued by the Royal Col ege of Physicians,National Council for Palliative Care and the British Society of Rehabilitation Medicine, March 2008) diagnosis while they are in a position to be aware of the possible loss of mental capacity andfunctioning at a later stage. Supportive counsel ing needs to incorporate aspects of bereavementsuch as grief and loss of possible life choices, changes in family roles and managing painful anddisabling symptoms as wel as advice on financial management, information on entitlements andlegal issues.
8. Aftercare and Bereavement Support to Families Families of people with neurological conditions may have had to adjust to a long period of gradualloss of functioning over time, with greater physical disability, loss of cognitive functioning andchanges in personality and behaviour. There is a need for constant readjustment in family roles andresponsibilities as wel as an increase in the demands of caregiving tasks over time. Research studieswith families of people with neurodegenerative conditions point to stages of grief in familymembers, where different aspects of loss are mourned as the person loses key abilities. Familiesrequire ongoing support and counsel ing throughout this period, not just of at end of life. However,it is recognised that there wil be a particular need for support at this stage. Families can experiencecomplex reactions of guilt, relief for the person as wel as a final sense of loss and bereavement.
There may be particular issues around the manner of a person’s death, particularly if there is theperception that it would not have been as they wished. In the case of neurological conditions with ahereditary component, there wil be need for specialist genetic counsel ing available to thesefamilies. In some neurological conditions such as Huntington’s disease, genetic transmission meansthat carers may face a double burden, someone caring for a parent may need to start caring for asibling or a spouse/partner caring for their partner may need to start caring for their child.
Advanced Planning and Neurological Conditions
Everyone should have the right to make choices about their care at the end of life. Those involved inthe care of people with neurological conditions need to be able to facilitate or support decisionsabout future management of the condition with the individual and their family.
An advanced directive (or living wil ) is where a person sets out their views in writing regardingfuture medical care to cover a situation where they were to become mentally incapable or unable tomake decisions themselves. A living wil can only relate to lawful treatments (such as withdrawal ofmedical treatment). There is no legislation in Ireland governing living wil s and it remains uncertainwhether a Living Wil has any definitive legal standing in Ireland. In jurisdictions where they arerecognised: -The individual must be over 18 and have mental capacity at the time they express theiradvance refusal -They need to be informed and should understand the nature and consequences ofthe treatment/intervention they are refusing -They need to be free from coercion.
While there is no legislation at present to underpin advance directives, either formal or informal,they are a means of ensuring wishes are respected fol owing the onset of incapacity and not just atend of life. Advanced care planning can be facilitated though a discussion between an individual andthe staff involved in their care. It may include family members and friends. There is a role for anindependent advocate in assisting the person to make a decision about their care and treatment.
This discussion be documented, regularly reviewed and communicated to key persons involved intheir care.
The Irish Council for Bioethics has noted that4: In Ireland, there is no specific legislation in relation to advance directives. The lack of legislationmakes the status of advance directives unclear and, as a result, their implementation may or may notbe enforced. Nonetheless, it has been suggested by the Law Reform Commission of Ireland (LRC) thatit should be possible for an individual to make a legal y binding advance directive, provided thedecisions within the directive are themselves legal. However, in its final report on the issue ofhealthcare decision-making for vulnerable adults, the LRC concentrated on “the limited context ofcertain healthcare decisions which might be conferred using an enduring power of attorney”, asopposed to dealing with the issue of advance directives directly. It should also be noted that thediscussion of the issues surrounding advance directives and end-of-life care has been a relativelyrecent development in Ireland. The lack of clarity surrounding the validity and applicability ofadvance directives in Ireland is, no doubt, a result of the fact that there have been very few decisionsof the courts that have touched on the issue of a patient’s previous wishes regarding treatment. The NAI welcomes the fact that the Department of Health has recently agreed to address the issueof advanced care directives, as part of the development of legislation in relation to Assisted DecisionMaking.
Disease-specific Issues in relation to Pal iative and End of Life Care in Neurological Conditions
Most people with MS initial y have relapsing and remitting progress, with attacks affecting differentparts of the central nervous system and with complete or partial recovery between attacks. Whetherthe disease begins with a relapsing or progressive course, in most cases the disease progression wilresult in progressive disability. The disease may be highly variable, the majority of people wilexperience progression and for some, this can occur shortly after diagnosis.
This is a progressive condition and with modern dopamine replacement therapy it can be control edfor several years. However, most people wil suffer a progressive decline before the end of life dueto motor and nonmotor fluctuations, neuropsychiatric problems and problems with muscle control.
This makes careful and timely care planning and provision essential. Palliative care should beinvolved at an early stage to assist with symptom management. Individuals should be encouraged toundertake advanced care planning but they, their careers and clinicians need to be aware thatpeople can deteriorate dramatically and appear close to death due to treatment problems, and/orintercurrent infections, only to recover swiftly with appropriate intervention and resume theirprevious way of life.
The development of a standard care pathway is critical to the management of HD in order to identifythe services and care required by people with HD from initial onset/diagnosis to rehabilitativetreatment and on to end of life care.
4 Is it time for Advanced Care Directives. The Irish Council for Bioethics 2007 Conveying a HD diagnosis requires sensitivity and support from the clinician involved. ANeuropsychological assessment fol owing diagnosis is necessary to establish decision makingcapacity and facilitate advanced care plans and legal and financial decision making.
Neuropsychological services are required for people with HD and their families throughout thedisease trajectory. Health and social care professionals working with people impacted by HD shouldbe aware of the genetic impact of HD and the myriad of physical, cognitive and psychiatricsymptoms in order to effectively assist in supporting the patient and family. Combining palliativecare with multi- disciplinary care throughout the course of HD wil help the patient and family makea successful transition through increasing levels of disability while maintaining independence anddignity. Care facilities and healthcare teams should recognise the carer’s knowledge of the conditionand of their loved one’s preferences. Family carers should be included and consulted at each stageof the person’s care5.
Parkinsonian syndromes - multiple system atrophy (MSA) and progressive supranuclear palsy (PSP) These conditions may be initially be mistaken for PD, but most are usually less responsive tomedication and the progression of symptoms is generally more rapid. In MSA there is a combinationof Parkinsonism with brain and nervous system dysfunction whereas in PSP there is limited eyemovement, cognitive change and physical instability (leading to falls and fractures). The prognosis isusually two to four years from diagnosis - people develop considerable disability and require carefulassessment and care.
Whilst for many the course of MND is predictable and palliative care can be planned in a similar wayto that of individuals with a cancer diagnosis, others can die suddenly from respiratory col apse.
Around 10 percent have a slowly progressive form of MND that can last 10 to 20 years.
Muscular dystrophy, progressive nerve and brain disorders each pose their challenges. These includeboth inherited and degenerative conditions. Diseases of the central nervous system such asHuntington’s disease, prion diseases and cerebel ar degenerations may have the additionalcomplexity of cognitive loss. The nervous system can also be affected by a variety of cancerousconditions and the individual may have other diseases. Specialist management, a multidisciplinaryteam and close liaison with palliative care should all be considered.
The Alzheimer Society of Ireland has produced a series of excel ent reports in relation to palliativecare and end of life issues in dementia and their recommendations wil be supported and addressedin the course of this submission. It is important to understand that dementia is a feature, not just ofAlzheimer’s disease but a range of other neurological conditions including Huntington’s disease anda proportion of those with Stroke, Parkinson’s disease and other movement disorders and MultipleSclerosis with a proportion of people with these conditions developing symptoms of dementia.
5 From the Huntington’s Disease Association of Ireland submission to the Hearings on End of Life Care. 2013 Building Consensus6, provides an excel ent insight and understanding in relation to the palliative careand end of life support needs of people with dementia.
The recommendations of this report wil be discussed in the next and subsequent sections of thissubmission.
Irish Reports, Papers and Some Current Research on Pal iative Care Needs and Pal iative Care
Services for People with Neurological Conditions

Palliative Care Service Use and Service Need among People with Neurological Conditions A 2008 report on end of life care for older people in acute and long stay care settings in Ireland7provides a summary of the main difficulties in relation to the provision of palliative care facilities inIreland, many of which are also relevant for people with neurological conditions. These include: -Low levels of access to consultant-led palliative care teams -Lack of training for health professionals in palliative care -Routine visiting/service provision in long term care settings for a variety of health professionals is -Low provision of formal bereavement support services -Existence of written policies on advanced directives is low, particularly in public long stay facilities There has been no research to date in relation to the needs and experiences of people withneurological conditions as a group in relation to end of life support and palliative care and there is acritical dearth of information about the overall pattern of service use and service need for thispopulation.
However we can extrapolate an understanding of the issues and challenges facing this populationthrough consideration of the information that is available in Ireland at present.
(1) Findings and Recommendations of the Feasibility Study on Palliative Care needs among (2) Findings from NAI consultation with members organisations working with people with (3) Other reports and papers in relation to palliative care and neurological conditions in Ireland 1. Findings of the Building Consensus Report 6 Building Consensus for the Future: Report on the Feasibility Study on Palliative Care for People with Dementia. Alzheimer Society of Ireland and the Irish Hospice Foundation 2012 7 End of Life Care for Older People in Acute and Long Stay Care Settings in Ireland. Department of Health and Building Consensus for the Future includes a number of insights into the needs of service users andtheir families and number of recommendations which are also applicable to the wider population ofpeople with neurological conditions, as wel as those experiencing dementia.
Many of the key features of current service provision identified in the report also apply across arange of neurological conditions in terms of the need for targeted information and support services,“transitional” points in the care journey and lack of capacity in a number of areas of serviceprovision which impacts on service users and their families.
Building Consensus outlines that there are a wide range of sectors, service domains and serviceproviders involved in the care of the person with dementia. The report points to the particularchallenges facing the family in terms of “navigating” these services. Primary care, and specifically theGP, play a critical role throughout the disease trajectory. There is a real need to engage with theperson with dementia and the family in a meaningful way and to also support and inform themabout the range of services available. The report identified ‘transitions’ to services including acutecare, residential care, respite care, community care, as key milestones in the progression of thecondition. Families and healthcare professionals have identified that more supports and help areneeded to make the transitions successful and as seamless as possible. Using integrated carepathways models to support the delivery of dementia care in general and dementia palliative care inparticular are needed. The report outlines a series of specific recommendations in relation to serviceprovision, including: -case studies of selected sites with existing good dementia palliative care practices to bedisseminated as good practice -Developing and resourcing dementia palliative care interventions in residential settings throughengagement with the residential care sector -Supporting primary care and acute hospitals in the introduction of interventions to supportpalliative care in dementia, including the Irish Hospice Friendly Hospital Programme.
-Engagement with the Special Delivery Unit to provide fast track protocols to prevent people withdementia being admitted to hospitals and if admission is needed, to reduce the number of days theperson is in hospital and reduce distress.
-Producing a suite of information products to meet the information needs of people with dementiaand their families, as wel as guidance materials for staff to include a focus on palliative care.
Building Consensus identified a limited knowledge and skil s base across the services in relation todementia palliative care. The report outlined a series of recommendations to address the need foreducation and training including: -evaluation of existing training and educational materials in order to strengthen and developdementia palliative care awareness and expertise among healthcare professionals -development of a dementia palliative care web based training and education site -establishment of a peer to peer learning network to bring together dementia experts and palliativecare experts The feasibility study found a dearth of research in the area of dementia palliative care. It pointed outthat there is a need for more research across a range of areas in relation to palliative care anddementia in Ireland including: -research to understand the policy, services, education and training required -mapping what is currently happening in Ireland and developing initiatives as needed.
-formulating a research agenda that spans the policy, services, education and training needs topromote dementia palliative care -carrying out a prevalence study of people with dementia in one of the major acute hospitals inorder to ultimately move towards the design of a Dementia Friendly Hospital.
-Research and develop a range of guidance documents/good practice guidelines/decision makingtrees for healthcare professionals dealing with the specific aspects of end of life care for examplePEG feeding, nutrition and hydration and communication etc.
-Research the palliative care needs of the person with dementia, their carer and family includinganticipatory grief and bereavement counsel ing.
- Building on existing tools and frameworks, research ethical dilemmas that present at end of lifecare for people with dementia and build a framework for informing ethical decision- making.
-Dissemination of these research findings across a range of stakeholder groups.
The report outlines a series of recommendations in relation to providing an overal strategicapproach to the management of dementia which includes palliative care. Specific recommendationsinclude: -The forthcoming national Dementia Strategy in 2013 gives ful policy recognition to dementiapalliative care as an area that requires skil ed expertise and that dementia palliative careinterventions have relevance right throughout the il ness trajectory.
-The various professional groupings are informed and influenced to include dementia palliative carein their education and training initiatives, especially the GP, the primary care teams and legalprofessions.
-The Department of Health’s Special Delivery Unit is urged to consider protocols and specific policymeasures that direct acutely il people with dementia away to the most appropriate setting.
-The HSE clinical care programmes that specifically relate to dementia palliative care (care of theelderly, primary care and palliative care) promote and support the development of appropriatepolicy leading to interventions across the clinical care programmes.
- There is an assessment of the forthcoming mental capacity legislation conducted using a palliativecare lens and its implications for advanced care planning, living wil s and Enduring Power ofAttorney/Advocacy 2. Report Compiled by the Neurological Al iance of Ireland for the End of Life Forum In preparing its submission to the End of Life Forum in 2009, the NAI compiled the concerns of itsmember organisations specifically in relation to current service provision for people withneurological conditions around end of life issues and palliative care. These can be summarised asfol ows: 1. The NAI acknowledge the excel ent service provided by palliative care services, including Hospicehome care teams and Hospice respite care. However, people with neurological conditions havedifficulty in some parts of the country accessing palliative care services as the limited service is underpressure to provide care to a range of patients, predominantly cancer patients.
2. From reports of NAI member organisations, there appears to be little co-ordinated specialistsupport available to enable people with neurodegenerative conditions to be cared for in their ownhomes.
3. Most non-specialist care providers such as GPs, District Nurses and staff in care homes are likely tohave little experience of the type of care patients and their families may need.
4. A lack of specialist in-patient facilities places a significant burden of responsibility of communitybased staff to deliver the complex care required at home for long periods. Organisations report thatcommunity services do not have the capacity or expertise to meet the level of need 5. Overall lack of capacity in the provision of acute neurology services in Ireland and the lack of acommunity based neurology service leads to delays and difficulties in the ongoing medicalmanagement of neurological conditions which particularly impacts those with significant care needs.
The ability of acute neurology services to support and liaise with the work of palliative care servicesis necessarily dependent on their own resources. A number of reports on neurology andneurosurgery have pointed to the low numbers of neurospecialists in Ireland relative torecommended levels.
6. There is lack of suitable palliative care facilities to provide appropriate accommodation for peopleat the end stages of neurological disease. This is particularly the case for younger people 7. Availability of specialist information, training and counsel ing for people with neurologicalconditions and their families around symptom management, end of life planning and bereavement isvery limited in Ireland.
8. The lack of integrated care planning for neurological conditions means that there is inadequatepreparation for end stage needs and services fail to respond quickly and adequately leading tosignificant anxiety and distress for families and the individual themselves.
9. There is a significant lack of neuropsychological input to assess and manage cognitive andbehavioural changes as a result of neurological conditions. This impacts on all stages of the care pathway, from helping people to deal with their initial diagnosis to providing appropriate advice onlater stage care and capacity to consent. 10. Individuals and health professionals need access toservices which can provide information and guidance on issues such as legal capacity, consent andpower of attorney to allow informed decision making about their options.
Consultation with NAI member groups resulted in a series of recommendations in relation toaddressing the needs of people with neurological conditions for services and support in relation toend of life and palliative care.
1. Need for multidisciplinary neurospecialist input around symptom management and medication atall stages of neurological conditions but most particularly at the later stages of the disease. Theimportant role played by clinical nurse specialists was stressed in this regard.
2. Need for ongoing training and information for carers on symptom management, lifting andmoving the person and advice on medication 3. Where it is suitable and desired that a person be cared for in the home, the provision ofappropriate medical and care support, adaptation and equipment and respite to enable this to takeplace 4. Appropriate accommodation facilities for end stage care of neurological conditions including theavailability of staff trained in both the management of these conditions and in palliative care 5. A number of specialist interventions can be used to control spasticity in neurological conditions.
These include botulinum toxin injections, intrathecal baclofen pumps and phenol blocks.
Administration and monitoring of these interventions by a neurospecialist is required. In addition,physiotherapy support and other fol ow up is needed. Pressure on acute neurology services and thelack of community based services impacts on the availability of these services and proper fol ow upfor patients.
6. There is a need for counsel ing and support for individuals and family members around legalissues, advanced care planning and end of life issues. Communication of a neurological diagnosis byhealth professionals requires sensitivity in understanding and dealing with individuals and familymembers as fol ows:  Invite the person to bring someone with them when getting test results Convey the diagnosis sensitively giving the person time and undivided attention Al ow time for the information to sink in checking that the person understands what is being  Provide information on specific and general support Arrange a fol ow up appointment in the near future Discuss referrals to neuropsychology, rehabilitative therapies etc 7. Facilitated choice over preferred place of care for individuals and their families 8. Guidelines for the management of neurological conditions to ensure that staff who come intocontact with these patients have an understanding of their needs at the later stages of theircondition (including the specific needs of people with neurological conditions:1-6 outlined earlier 9. Palliative care needs to be a central aspect of the management of neurological conditions withprotocols developed for communicating bad news, discussing options and facilitating access tosupport from voluntary organisations. Research in this area indicates that people need a stagedapproach to the discussion of end of life issues, with the facility to take in some information, thencome back later with questions rather than being given a lot of information all at once. Patients alsoreport the need for open and honest communication from professionals about future consequencesof their condition and the opportunity to discuss these.
3.Other research/reports including forthcoming research on pal iative care and neurologicalconditions A number of research studies are ongoing in relation to understanding and meeting the palliativecare needs of people with neurological conditions in Ireland. When completed, the findings of thisresearch wil be vital in informing the development of initiatives to address the needs of thispopulation Study on Palliative Care in Parkinson’s disease involving University Col ege Cork andspecialists in geriatric and neurological care, Cork University Hospital.
This study is an initiative to raise cultural awareness, educate healthcare workers and provide cohesive support to patients and their carers/families. This project aims to develop National guidelines, a National HCW education package, and National patient/ carer information, as wel as a local pathway for palliative care in PD.
National MND Clinic Beaumont Hospital and Irish Motor Neuron Disease Research Foundation (RMN). Project to improve the quality of psychological care for Motor Neurone Disease (MND) patients and their carers through development and delivery of an accessible training program for the multidisciplinary team in col aboration with the Irish Motor Neurone Disease Association (IMNDA).This development project proposes to design, deliver and evaluate a training program for the multidisciplinary team to improve the competence of palliative care staff to deliver psychological services to patients with life-limiting neurological disorders, specifically MND. The project wil include the development of eLearning course(s) for ease of access by regional centres, a workshop at Irish Hospice premises and knowledge base of support material. This project wil leverage off research being undertaken by Our Lady’s Hospice care services to examine the different psychological approaches used by therapists in Ireland, UK and Italy for MND patients. This development project wil be in col aboration with the Irish Motor Neuron Disease Association (IMNDA) and Professor Orla Hardiman and her team at Beaumont Hospital.
The Neurological Al iance of Ireland and the Irish Hospice Foundation are commencing afeasibility study to examine the needs of people with neurological conditions in relation topalliative care and end of life support from the perspective of these individuals and theirfamilies and the staff and volunteers of the not for profit organisations working with them.
The fol owing groups have agreed to be part of this research: the MS Society of Ireland,Huntington’s disease Association of Ireland, Irish Motor Neurone Disease Association, Progressive Supranuclear Palsy Association, Brain Tumour Ireland and the Parkinson’sAssociation of Ireland.
(Note: This just a sample of current research into the area of palliative care for specificneurological conditions) Dr Tim Counihan, a Consultant Neurologist based in University Col ege Hospital Galway haswritten a paper on Palliation in Movement Disorders8 including Huntington’s disease andParkinson’s disease. The paper notes that palliation in these conditions aims to enhance thequality of life of both patients suffering from these progressive il nesses and their families.
The report outlines the need for a multidisciplinary therapeutic strategy in relation to themanagement of these conditions encompassing neuropsychology, speech and languagetherapy, occupational therapy, nutrition and dietetics, physiotherapy, social work,respiratory care, specialist nurses, orthotic and wheelchair services, geneticist andneurologists.
The paper addresses a number of critical issues in relation to the palliation of Huntington’s diseaseand Parkinson’s disease including: -Quality of Life and Invasive Procedures in Advanced Stage Parkinson’s disease (v) The Alzheimer Society of Ireland continue to work with a range of other stakeholders towards theimplementation of the findings of the Building Consensus Report. The NAI is ful y supportive of thework of ASI in this area in developing appropriate responses to dementia which is a feature of arange of neurological conditions.
Summary of Current Issues in Relation to End of Life Support and Pal iative Care for People with
Neurological Conditions in Ireland

The fol owing section is an attempt to summarise the considerable range of points made in thepreceding pages and outline a set of recommendations to be considered.
Research/Understanding in relation to pal iative Care issues
There is a critical need for more research into palliative care issues and end of life support for peoplewith neurological conditions in Ireland. Research is needed to understand the current experiences ofthis group, their needs for information, support and services, current patterns of service useincluding mapping of existing supports and engagement with health professionals and other service 8 Palliation in Movement Disorders. Dr Tim Counihan, Consultant Neurologist, University College Hospital Galway. Published in “Modern Medicine” paper available on request.
providers. Research is needed to outline the understanding, awareness and skil s base among healthprofessionals in relation to the palliative care needs of this group. There is also a need for researchon interventions and initiatives to support people with neurological conditions and their families inrelation to a wide range of aspects of coping with the onset and progression of neurologicalconditions.
Policy Framework and Integration into Existing Services
Palliative care principles are relevant and applicable to anyone with any life limiting il ness, throughtheir disease trajectory, although they have traditional y been associated with the treatment ofcancer in the last days of their life. There has been increasing recognition that the need for palliativecare should be extended to include people with other conditions. However, to date, there has beenan overall lack of direction when it comes to providing palliative care within existing diseasemanagement frameworks. The NAI is currently working with the Irish Hospice Foundation to worktowards promoting the integration of palliative care principles in the provision of services to peoplewith neurological conditions.
Neurological conditions require the input of a wide range of service providers and healthprofessionals due to the complexity of these conditions and their resulting sequelae. There is a needfor palliative care to be understood and addressed at each stage of the care pathway. Thedevelopment of models of care through the clinical programmes in neurology and rehabilitationmedicine, provide an important opportunity to ensure that palliative care is included and thatguidelines are developed for specific neurological conditions which include addressing palliative careand end of life needs. The NAI would encourage a link between the palliative care programme andthe neurology and rehabilitation medicine programmes in developing guidelines and pathwaysaround palliative care needs and end of life support.
Specialist Services and Supports
Recommendations for services in this area include: 1. the availability of medical management interventions and treatments to provide palliation at all stages of neurological disease and the necessary facilities to provide these treatments 2. the availability of specialist staff to deliver and monitor these treatments, interventions and The interface between neurology, neurorehabilitation and palliative care is vital in ensuring a co-ordinated response to addressing the need for palliative care supports at each stage in theprogression of a neurological condition. It is important to understand that many aspects of palliativecare start at the early stages, managing symptoms, planning for the future and making decisionsabout further care. The current lack of capacity in neurology and neurorehabilitation servicescontinues to have a critical impact on the ability of these services to provide the multidisciplinaryinput required for the long term management and palliation of neurological conditions. The ability ofneurology and rehabilitation medicine services to support and liaise with the work of palliative careservices is necessarily dependent on their own resources.
3. the need for specialist inpatient facilities for end of life care for people with advancing
4. Where it is suitable and desired that a person be cared for in the home, the provision of appropriate medical and care support, adaptation and equipment and respite to enable thisto take place.
5. There is a crucial need to promote awareness and understanding and develop the skil s base of health professionals and other service providers in meeting the palliative care needs ofpeople with neurological conditions through the provision of guidelines and training.
Healthcare professionals and other service providers require training and guidance inidentifying and meeting the palliative care needs of people with neurological conditions andtheir families. Guidance in this area should address a range of areas in addition to themedical management of the condition, including:-sensitive and appropriate communication of the diagnosis and of information in relation tothe condition-support and information with future planning-linking families to appropriate supports in relation to the financial, legal andpersonal/emotional aspects of progressive neurological conditions 6. Family carers provide the substantial majority of care to people with progressive neurological conditions. Training for carers in appropriate skil s such as lifting, administrationof treatments, feeding etc is needed.
Information, Support and Advocacy
It is vital to understand that palliative care and end of life support for neurological conditions is notjust about the medical management of the condition. There is the need for consideration, awarenessand expertise among service providers of the legal, emotional, financial and future planning issues,bereavement and aftercare in relation to advancing neurological disease. Patient organisations havestepped in to play a vital role in supporting people in addressing these aspects of palliative care.
There is a crucial need to recognise and support this aspect of service provision as a vital aspect ofpalliative care and end of life support for people with neurological conditions and their families.
For Further Information on this Submission please contact
Mags Rogers
Development Manager
Neurological Al iance of Ireland
E mail: nai [email protected]
Phone: 01 8724120 086 1216957
Member Organisations of the Neurological Al iance of Ireland
Brainwave: The Irish Epilepsy Association Huntington’s disease Association of Ireland Associate Members
Irish Society of Physicians in Geriatric Medicine Irish Association of Speech and Language Therapists Irish Institute of Clinical Neurosciences Appendix 1. : Models and Tools to Support Service Provision for Pal iative Care in Neurological

A number of initiatives developed in the UK in relation to palliative care for cancer have beenincorporated in the design of specialist palliative care programmes for people with neurologicalconditions and their families in the later stages of their il ness. These models include: The aim of the Gold Standards Framework is to: -identify patients in need of palliative/supportive care towards the end of life -assess their needs,symptoms, preferences and any issues important to them -Plan care around patient’s needs andpreferences and enable these to be fulfil ed, in particular allow patients to live and die where theychoose The 5 goals of the Gold Standards Framework are to ensure that 1. Patients are as symptom control ed as possible 2. Place of care: patients are enabled to live wel and die wel in their preferred place of choice 3. Security and support-better advanced care planning, information, less fear, fewercrises/admission to hospital 4. Carers are supported, informed, enabled and empowered 5. Staff confidence, communication and co-working are improved.
7 key tasks or standards to aim for in the Gold Standards Framework: (a) Communication (between health care staff and patient and family as wel as with each other(b) Co-ordination(c) Control of symptoms(d) Continuity of care including out of hours provision(e) Continued learning(f) Carer support(g) Care in the dying phase The Liverpool Care Pathway for the Dying Patient was developed for cancer patients by the MarieCurie Palliative Care Institute, Liverpool The Liverpool Care Pathway for the Dying Patient aims: -to improve the knowledge related to theprocess of dying -to improve quality of care in the last hours/days of life Key sections include initial assessment, ongoing assessment and care after death. The pathwayincorporates key domains of care to make sure that al these areas are addressed: -Physical -Psychological -Social -Spiritual The preferred place of care is a patient-held record that wil fol ow the patient through their path ofcare into the variety of different health and social care settings. The document records: -a familyprofile and carers needs -The patients thoughts about their care, their choices and preferences -Theservices that are available in a locality and being currently accessed by the patient -recordingchanging care needs At any time, the PCC can be changed based on decisions about treatments, medication or thepreferred place of care itself.
End of Life Framework for Long Term Neurological Conditions The UK Neurological Al iance the UK National Association for Palliative care published a frameworkin 2008 for end of life care in neurological conditions.
This document sets out an End Of Life Care framework for implementation that specifically meetsthe needs of those with neurological conditions and can apply to professionals in all care settings.
Step 1: Discussion as end of life approaches Step 2: Assessment, care planning and review Step4: Delivery of high quality services in different settings The framework provides information and guidance on a range of aspects of palliative care for peoplewith neurological conditions, including: 1. Management of physical symptoms2. Holistic care: psychosocial and spiritual aspects3. Care at end of Life4. Supporting carers of people with neurological conditions and the issues facing them5. Education and training for health professionals and other service providers Appendix 2
Night Nursing Neurological Statistics 2011-2012 Irish Hospice Foundation
Dementia inc
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