For many commentators, the hospice movement is inextricably linked to palliative and end-of-life care. This work, in collaboration with other stakeholders, developed the first national strategy for end-of-life care [3.
De fi ning End of Life Care Today and Exploring the Remit of Those Who Are Involved in Its Delivery
This was initially identified within the quality markers for the delivery of end-of-life care [ 18. This framework emphasizes that social care has an essential role to play in the delivery of end-of-life care.
End of Life Care Delivery, What Should It Look Like?
In an attempt to address this, the end-of-life care strategy has outlined a care pathway that includes a six-step approach (Fig. 1.1. To conclude, the area of palliative and end-of-life care has an intriguing and sometimes checkered history.
The route to success in end-of-life care – achieving quality in prisons and for prisoners. Summary Neurological disease can occur and progress in many different ways, according to the disease and the individual, and presents a challenge for care throughout the course of the disease and especially at the end of life.
Variability in Progression
Conventional palliative care services have become involved in the person's care and have remained an integral part of the care pathway until death (Fig. 2.1). Neurological diseases, with varying prognosis and varying needs, may require a new model of care – model 3 – in which palliative/end-of-life care has an episodic involvement with less contact between these phases of care [ 5 , 6
Model 3, with episodic involvement, may be more appropriate for neurological diseases as the needs vary over time. There may be disease progression and treatment may no longer be appropriate or acceptable to the person, and withdrawal from treatment may be discussed.
Disease-Speci fi c Problems
Initially, it may be difficult to distinguish Parkinson's disease from other Parkinsonian syndromes, multiple system atrophy and progressive supranuclear palsy. In the relapsed phase of the disease, disease-modifying therapies can be used to reduce relapse and thus the risk of permanent disability.
Recognition of End-of-Life Care
This will also include greater awareness of the need to consider and discuss end-of-life issues with all professionals involved. In this way, the care provided can be more appropriate, and advance care planning and preparation for the end of life can start - as described in later chapters.
Conclusion
Nurse: “Harry, I would like to try to understand if you want to tell us something. Can you squeeze my fingers once for 'yes' and twice for 'no' if you understand?"
Speech impairment is associated with a certain stigma, and the development of speech problems can be unpleasant for the individual. Speech problems can be progressive, but with many neurological disorders the rate of deterioration is slow enough to allow time to recognize the problem and develop coping strategies.
Cognitive Problems
It can be difficult to recognize when someone with a neurological condition reaches the end of the life phase, but there are certain "triggers" [6] that can help to recognize this phase - see ch. once and struggle with concentration or word-finding problems. Discussions about future care and planning around end-of-life care can be difficult regardless of whether there is cognitive change and are therefore sometimes avoided by both patients and professionals.
This may sound strange to you, but I am so relieved that his memory problems are part of Parkinson's disease. Some are shocked because the current symptoms seem insignificant compared to the consequences of the diagnosis.
Planning for Changes in Communication
These tables can be used to supplement verbal communication in spelling words that are difficult to say or hear. In cases of speech loss, communication signs can be the primary method of communication.
Understanding Distress in People with Communication and Cognitive Problems
He was genuinely concerned about their financial security and felt powerless to influence how their money was managed. This patient's regular analgesia was discontinued after nursing home staff reported that he was pain free.
End of Life Decisions and Cognitive Problems
This was only partially effective, so he was switched to glycopyrronium solution with good effect. His speech was difficult to understand, he had poor oral intake, his weight dropped, and he became increasingly immobile.
The Context for Treating Physical Symptom
National guidance has highlighted the patchy nature of service provision for patients with long-term neurological conditions in the UK [7. These national publications also highlight the need for workforce development in the care of patients with long-term neurological conditions.
The National Service Framework for Long-Term Conditions (UK) has endorsed this approach for patients with neurogenerative diseases and sets out quality requirements that promote patient-centred care, support for family and carers, multidisciplinary teamwork, workforce development and access to palliative care. However, they emphasize that this palliative care approach is not only delivered by specialist palliative care teams, but should also be employed by any team involved with the patients.
Treatment of the Underlying Neurological Condition
Treatments Available for the Condition Which May Help Symptom Control
Treatment for Physical Symptoms Which Are Common to a Number of Neurological Conditions
The oral phase – The mouth prepares the food or liquid for swallowing by chewing and bolus formation. There is excellent evidence for the effectiveness and safety of the use of botulinum.
Treatment for Symptoms Which Are Speci fi c to Particular Neurological Conditions
Botulinum toxin A for overactive bladder and detrusor muscle overactivity in patients with Parkinson's disease and multiple system atrophy.
Holistic Care: Psychosocial and Spiritual Aspects
Recognizing an individual's spirituality in the broadest sense and somehow fulfilling these needs can be a challenge that many in the nursing professions already deal with on a daily basis. But there are some simple principles that can be used to help couples living with a neurological illness, especially in the area of sexuality.
Major Threats: His life is going from bad to worse due to the relentless progression of his disease. He may decide to decline some of the life-prolonging treatments that may be offered to him in the future, and he will need you to guide him as to what would be valid alternatives in those circumstances.
Cognitive Change
Overall, some degree of cognitive impairment is thought to occur in up to 65% of people with MS [5. However, in one study of 279 patients with MND, some degree of cognitive impairment (mostly involving the frontal lobes) was reported in more than 600 people. 50% of patients [ 13.
Social Issues and Social Care
Social care has an important role to play in supporting people to live well and die in the place of their choice [21. In the UK, the benefits and healthcare systems are currently undergoing significant change.
Support Speci fi cally for Families and Carers
Access to bereavement support services for young people remains unclear across the UK. Many young people will help care for a parent or grandparent with a neurological condition who is nearing the end of life and requires extra support.
Sexuality and Spirituality
Seeing a couple together can explore the dynamics of the relationship and promote communication. The report suggested that “the care of people with Parkinson's disease is best delivered in a multidisciplinary manner throughout each stage of the disease”.
Team Knowledge
An effective team is clear about how it works – in knowing the patients and each other and how they work together. This is an even greater problem when different teams are involved – with very different roles and involvement – and the care provided can be confusing for everyone involved.
Team Effectiveness
This involves developing an understanding of objectives (both explicit and implicit), resources and people to enable the team to find the most appropriate and successful strategies and actions. There is also a need to ensure greater respect for the different roles and pressures within the team.
Team Appreciation of Members
Careful monitoring of plans and developments, along with adapting to the changing environment and ensuring good communication and critical evaluation, helps the team work more efficiently and effectively. Within multidisciplinary teams caring for neurological patients, there may be different views regarding the philosophy of the team.
Team Member Roles
For example, there may be a medical member, such as the consultant, who takes the lead, while other team members would aim to work in a more integrated way. If these different views of the team's philosophy are not recognized, deep conflicts can arise and clarity of tasks and roles within the team is needed, along with a clear philosophy of team dynamics.
Leadership
Clear decision-making and clear leadership will enable thorough discussion within the team, and clear communication is essential among the entire team.
Communication
Coordination of Care
The difficulties of multi-professional involvement can be overcome by good communication and a clear point of contact for the individual and their family. It may be necessary to be with a specific team – so the contact is not dependent on a specific team member – and advice and support is always available.
Multiple Teams/Multiple Problems
The practitioner must be aware of the complexity of the situation and strive to minimize the number of people who come into contact with the patient and family and to coordinate care if possible through the core team. However, this will need to be supported by close collaboration and discussion between the various teams involved to consider all areas – relationships, processes, roles and goals – if patient care is to be delivered effectively and appropriately. for the benefit of patients and their families.
Communication Between Multiple Teams
Although each team may have its own goals, it is important that a coordinated team approach develops common goals, involving all teams with the patient and family. This can be difficult, especially if there are conflicts between the goals of different groups, and may require careful discussion and planning.
Team Con fl ict
Regular review of the care provided is also important to review and evaluate the team's activities – this may be through regular case reviews, post-event reviews following a significant event or error, or reviewing moments where communication or decision-making is failed. particularly difficult [ 18. This allows for regular assessment of team performance and the opportunity for improvement and minimization of conflict.
Team Stress and Pressures
Clear and supportive supervision can help build the team itself and facilitate the development of not only each team member, but also the team itself.
Team Resilience
Team Identity
Team Challenges
Wider societal norms can change and influence team functioning, such as legal changes that affect care, for example changes in immigration rules or assisted suicide legislation in a country. Resilience is not "possessed or not possessed" but "flows through the team in response to the situation it faces" [18.
Support of Professionals Within a Team
Funding or changes within the wider organisation, such as reorganization affecting future plans and developments. The awareness and responsiveness of the team to these issues is crucial to developing resilience so that the team creates an environment that allows for flexibility and response to adversity – whether from outside or within the team.
Team Stresses
Coping with Stressors
The multidisciplinary approach will enable the correct assessment of the patient and family, and lead all team members providing their own expertise and care in an effective and coordinated approach. In this way, advance care planning provides clearer decision making for everyone involved – the person with the neurological condition, their family and carers and the professionals involved in their care.
What Do We Mean by Advance Care Planning?
The main purpose of advance care planning is to enable people to influence or control their future care. How people can use advance care planning to identify and protect their wishes and preferences.
How Can People Use Advance Care Planning to Identify and Protect Their Wishes and Preferences?
It is possible for someone to identify someone whose views they may not want to be considered. The nominated person is there to be consulted in the person's best interest, but is not the decision maker.
Mental Capacity
The ADRT only applies if the person is unable to make the decision. The holder (or 'beneficiary') of the LPA must make decisions about the person's care and treatment in their best interests.
Language
Although this man had very limited communication, with support he was still able to express his wishes. There is therefore an obligation to think carefully about what can be done to support people so that they can understand, weigh and make judgments about information so that they can make their decision and then communicate it.
Further Resources
End-of-life care strategy – promoting high-quality end-of-life care for all adults. Summary Good end-of-life care always requires preparation, but this is especially true in neurological diseases, where the signs of impending death may be unclear and there may be a significant period of mental incapacity.
Introduction
However, both will be much less likely if this phase of care can be built on a foundation of competent palliation dating back to the previous course of the condition. The timing and nature of the terminal event are then the result of the availability of assisted ventilation within the prevailing healthcare system, whether tracheostomy ventilation is offered to a patient whose NIV is no longer adequate and whether the decision is made to discontinue tracheostomy ventilation . at some point in the patient's disease progression.
If the patient wants to stay at home, what is required of the family and what. It not only corresponds to the psychological needs of the individual, but also the social and probably also the spiritual.
Hydration and Nutrition
When early signs of death are evident, and especially as the respiratory capacity shows serious reduction, a stock of the principal drugs should be kept ready for use in the ward or at home. The main symptom problems that are likely to need attention at the end of life are inability to eat and drink, breathing problems, pain, and restlessness or agitation.
Any of these drugs can be given subcutaneously by syringe driver in combination with morphine and midazolam or levomepromazine. A phenothiazine can be used instead of the benzodiazepine, e.g. chlorpromazine or the more sedative levomepromazine.
Restlessness and Agitation
Midazolam is given subcutaneously and is satisfactorily combined with opioid and anticholinergic agents in a syringe driver: the initial dose is 2.5 mg as a single injection or 10 mg/24 hours with a continuous subcutaneous infusion. 3000 mg/24 hours, both subcutaneously, but if given by infusion does not mix with most other drugs, requiring the use of a second syringe pump.
Pain
End-of-life care is one of the most important activities we can be involved with. Ethical decision making in bereavement care and its applications in clinical practice.
What makes care for people with neurological disorders different from care for people with other conditions? Caring for people with long-term neurological conditions is always stressful, and anxiety levels escalate as the condition becomes more progressive.
Interestingly, although caregivers overall said "the most important unmet need is time away from home," one quarter of caregivers reported never needing to take a break. Cognitive symptoms that seem to "distort" the personality of patients and affect their behavior are prime examples.
Changes of Pace
Progressive episodes often leave patients and caregivers with “irreparably shattering experiences” [15] whose consequences can reverberate. Carers have been described as “the lynchpin of community care” [17] because of their vital role in providing individuals with the care they need.
Dying, Death, and Bereavement
Caregivers and patients who are unaware that the end of life is near must be told. Keywords Ordering quality end-of-life care • Long-term neurological conditions • Workforce • EOLC quality measurement.
Future Developments in Care: National Strategy and Commissioning
Summary An integrated approach to commissioning is essential to the development of services, and this should be guided by national strategy for long-term conditions and end-of-life care. This chapter focuses on policy in England, and although some aspects are unique to England and Wales, the principles of commissioning good quality end-of-life care would apply equally to any other developed country.
National Strategy
To raise the profile of end-of-life care and change attitudes towards death and. Long-term relationships and end-of-life care remained high on the agenda as part of
Commissioning a Person-Centered Service
The NHS Operating Framework, which sets out the key priorities for the NHS, continued to encourage good quality EoLC, strengthening the use of recognized tools such as PPC. At an organizational level, PCTs are being phased out and the vision of liberating the NHS [14] gives GPs greater local control as clinical commissioning groups, with local authorities identified as key decision makers.
