Unit 3 Assessment and care planning in end of life care

About this unit

This unit aims to give the learner an understanding of the person centred approach to assessment and care planning within end of life care along with the legal implications of any advance care planning decisions.

Learning outcome 1

The learner will: Understand the holistic approach to end of life care. The

learner can:

1.1 Describe the needs that should be considered when planning an individual’s end of life care, to include:

Health and well-being

Emotional

Social

Intellectual

Cultural

Spiritual

Religious

Communication

1.2 Describe how the needs of others can be taken into account when planning holistic care

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1.1 The needs that should be considered when planning an individual’s end of life care

Types of needs – Defining the whole person approach

Until relatively recently (in the last 20 years or so) care was planned around the physical needs of the person and carried out as a series of tasks. Therefore care workers were allocated tasks rather than people. However, it is now recognised that a person has needs beyond their physical care.

Holistic/Whole care

It is important that the whole care needs of the person are met. Care should be planned to take into consideration the religious, spiritual, psychological, social and cultural as well as physical needs. This means looking at individuals as a whole person rather than just focusing on their medical condition.

Remember, do not be tempted to assume that a person who is dying, especially in the final stage, has only physical needs. Their other needs are equally important and support for these essential.

Holistic assessment and care

Needs of the individual affect all areas of their lives and this must be taken into account when assessing need – for example, being able to practice the religion of their choice maintains feelings of well-being, choosing bath products and clothes promotes independence, forming new friendships encourages communication and socialising. The degree of independence promoted depends on the type of care and support an individual requires, their capabilities and the type of care and support provided by individual organisations.

Examples

Physical Emotional

Needs Preferences Needs Preferences

Personal care and grooming, dressing

Choice of products, bath or shower, daily, morning, evening

Ability to express emotions

Method of communication

Given appropriate opportunity

Support for dressing Stable footwear

Choice of clothing, styles, footwear

Feelings of independence

Choice and self- managing in day- to-day activities

Intellectual Social Spiritual / cultural

Needs Preferences Needs Preferences Needs Preferences Learning

Stimulation

Choice of skills/activities

Knowledge of what is available

Making friends

Who to talk to Attend place of worship

Where to go How to worship

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Holistic care is that which addresses the SPIESS dimensions of care:

Social – the ability to start and maintain relationships and to feel comfortable

within a society which has changing values

Physical – the functioning of the body. This will include disease processes and disability.

Intellectual (Mental) – Ability to think clearly and logically

Emotional – the ability to recognise and express emotions appropriately

Spiritual – religious beliefs, cultural values and behaviour

Sexual – the ability to express one’s sexuality

It is important to establish existing needs and interests, using the six SPIESS headings. Before assessment can be considered to be complete, and prior to formulating a plan of care, you should be aware of possible barriers the client may have.

In order to provide holistic care and develop therapeutic relationships with clients, it is important that care workers find out about the individual’s needs, wishes and preferences and strive to meet these needs by developing a holistic plan of care and providing active support for individuals.

Health and well-being

Well-being can be described as what we all need to make life worth living. World

Health Organisation (WHO) Definition of Health:

“Health is a state of complete physical, mental and social well-being and not merely the absence of disease and infirmity”.

The World Health Organisation (WHO) defined Quality of Life as: “A broad ranging concept, incorporating in a complex way individuals’ physical health, psychological state, level of independence, social relationships, personal beliefs and their relationships to salient features of the environment” (WHO Quality of Life Group 1995).

Rapley (2003) stated “it is whatever it is to a given individual at any given time”.

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How individual identity and self-esteem are linked with well-being

Well-being is what we all need to make life worth living. In order to maintain well- being we need to recognise whole care needs, know the individual’s life history, ensure our approach is person-centred and focuses on treating a person as an individual whilst preserving their identity and maintaining self-esteem. The person who is experiencing well-being will:

Be able to communicate with others

Express their wishes

Form meaningful relationships

Show pleasure and enjoyment

Have a strong sense of self/personal identity

Have a sense of purpose

Show signs of self-respect

Being valued and respected as an individual with a distinct identity will promote feelings of self-worth and maintain self-esteem. This will result in the preservation and maintenance and well-being.

We all need:

Physical care that is personal and offers individual choice

Emotional care that is sensitive to our feelings, individuality and past life

Social care that is relevant to how we spend our time in an individually meaningful way

Spiritual care that is respectful of the meaning to our lives

Cultural care that respects our identity

Religious care that respects our beliefs

Care that promotes mental health

Sexual care which recognises our sexuality in a sensitive and respectful way

Political care which is sensitive to our views and opinions

It is important to promote the wide range of medical and social approaches that can help maintain a person’s self-esteem.

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Total pain – identifying types of needs

If you were asked for a definition of pain you would probably think of a physical pain. However, there are many different ways pain may be experienced and understanding this is vital when providing quality palliative care.

Total pain is an approach to our understanding of pain based upon the appreciation that such ‘pain’ is multi-faceted with physical, social and spiritual dimensions. Types of pain that constitute total pain

These may include: Physical pain

This can be caused by disease, injury or psychological stress factors. Severity will vary. Adequate assessment, monitoring and relief of pain are essential.

Emotional or psychological pain/needs

Fear is the emotional pain most people associate with the stress of facing one’s own death. However, the issues faced can also lead to depression, anxiety or guilt.

Focusing on emotional needs

Person-centred care helps us to realise that people who are dying and their loved ones need more than just physical care. Palliative care is not just about carrying out physical care tasks.

People who are dying have emotional needs. They and those significant to them need to be involved in all decisions and should be central to the decision making process.

Care workers have a responsibility to ensure that their person-centred approach includes the following aspects:

Ensuring that you understand their past – their biography. This includes:

- Life history, i.e. who they are

- What matters to the person and why

- The most important things in their past that have affected them.

Identity

- What makes the person who they are

- What is individual/unique about them

- Autonomy agency – being in control.

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Person-centred care involves giving control to the individual. This can be done in many ways, including the person making choices and having control over their care, treatment and day to day activities.

Communication and interaction – being involved.

A person who is dying needs to talk, to be listened to and be involved. All care workers should be trained to support and effectively communicate with the individual and their loved ones.

Social pain/needs

News that an individual is dying may have a great impact socially. People usually wish to carry on normally, as far as is possible, including maintaining social contacts. However, this may prove difficult as illness and treatment may limit an individual’s activities and socialising, as they become housebound or receive hospital/hospice treatment, leading to isolation and loneliness. Friends or even family may avoid contact with the person, as they feel they do not know what to say or how to behave, or they find certain aspects of the person’s illness extremely difficult to cope with. As the illness progresses, the person themselves may find they cannot tolerate social situations or another’s company for too long, and may find conversation difficult and very tiring. This can be caused by changes in their ability to keep in contact with people. Social isolation, relationship and money worries cause increased distress when people are approaching the end of their life.

Intellectual needs

The ability to think clearly and logically is essential for an individual to make informed choices and understand the information given to them regarding their care and treatment.

Cultural pain/needs

People may feel cut off from their culture and community or country. They may experience a language barrier which means they cannot always make their needs and wishes known. Some individuals may become distressed by others’ lack of understanding and respect for cultural issues, such as ritual, customs, traditions, dietary requirements.

Spiritual pain/needs

People may lose hope and not be able to make sense of what is happening. They may have difficulty finding a purpose to life. These factors may cause great pain. Identifying what is spiritually important to the individual will enable care to be planned to meet these needs.

Religious pain/needs

A dying person may feel as if they have been deserted by God or are being punished. They may feel shocked or guilty that their faith is not sustaining them through this experience. Lack of access to places of worship and ministers of religion and being unable to carry out religious rituals may also increase ‘pain’. Therefore it is vital that a person’s religious beliefs are established and they are enabled to access places of worship and ministers of religion and that their beliefs are understood, respected and supported.

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Communication What is communication?

Communication can be defined as: "Any act by which one person gives to or receives from another person information about that person's needs, desires, perceptions, knowledge, or affective states. Communication may be intentional or unintentional, may involve conventional or unconventional signals, may take verbal or non-verbal forms, and may occur through spoken or other modes."

Why is communication important?

Good communication increases the chances of an effective working relationship between professionals and clients

Good communication decreases the chances of clients feeling patronized. Many clients will have lost their independent lifestyles and it is extremely important to help them retain as much independence as possible.

Good communication will help to reassure clients and their family and friends who have recently been admitted to your care environment as they may be feeling anxious.

Open, honest communication from the start will allow realistic goals to be set

Poor communication can result in misunderstanding and cause unnecessary distress for the individual and his or her family and friends

Poor communication can result in the individual’s fears and questions remaining unanswered and this can increase stress for clients, their relatives and friends and also for care staff

Understanding the communication and language needs of clients

Communication is a basic human right, and it is through communication that we are able to:

Control our existence

Make friends and build relationships

Become independent and make choices

Learn

Express our feelings, thoughts and emotions

Make sense of the world around us.

Within society, we have developed ways of communicating and understanding each other, and it is this shared understanding that is fundamental to being included in a society. Spoken and written language is the primary means of communication within our society, however, some people have difficulty with communicating because of a number of reasons, and we have to be careful that these people do not automatically become undervalued and excluded within society.

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The individuals that you care for have a right to communicate in the way that they prefer, and it is an important part of your work that you offer these people choice in how they communicate. This demonstrates that you respect their right to be different and to make their own choices.

It is essential to know how individuals prefer to communicate in order to avoid any unnecessary upset and distress. For example:

A person who cannot speak English may wish to communicate through an interpreter

An individual who has impaired hearing and finds it extremely difficult to speak may prefer to use sign language

An individual who has a speech impairment may prefer to talk somewhere private and quiet where no one else can hear

An individual who uses a wheel chair may prefer for you to sit down next to them when you are talking so that they don’t feel that you are talking down to them

An individual who is visually impaired may need large print or a person who is totally blind may need to read Braille or moon

Before you even talk to the individual, you will make your own personal observations about that person. Those observations will directly influence the way in which you communicate with them. Getting to know the individual will help you to understand their communication needs.

In order to understand a person’s communication needs fully it is important that an initial assessment is carried out, but in carrying out this assessment it is important to remember that the outcome of the assessment will be dependent upon the assessor’s communications skills in the first instance.

All types of pain should be viewed as a whole. Treating physical pain is obviously a priority as this may in itself cause emotional pain. However, it must also be recognised that other types of pain can increase or aggravate physical pain – therefore treatment for other types of pain and the addressing of other needs can contribute to the relief of physical pain.

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1.2 How the needs of others can be taken into account when planning holistic care

Partnership and participation

Individuals, their families and other carers should be included in the assessment, planning and delivery of all aspects of their care. This will ensure that the service provided puts the individual at the centre of everything you do. Decisions are made and care is delivered with the person’s knowledge, understanding, cooperation and consent. You, as a care worker, should actively support people to participate as much as they are able.

In addition, any needs, wishes and preferences of family members/carers are identified and taken into account. It will not always be possible due to the needs of some carers to implement a plan of care if the needs of others affect their ability to support or carry out certain aspects of the care plan. This may be due to physical, social or environmental factors. And gaps must be identified and addressed.

The needs and wishes of other care professionals must be taken into account and all aspects of their plan of care implemented to ensure needs are met holistically and consistently. Inconsistencies and gaps in the delivery of care can adversely affect the quality of care an individual receives leading to unmet needs.

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Learning outcome 2

The learner will: Understand person-centred assessment and planning. The

learner can:

2.1 Explain why it is important to ensure the individual is at the centre at all end of life care planning

2.2 Outline ways to assess an individual’s needs and priorities

2.3 Identify a range of tools that can be used to inform the assessment

2.4 Evaluate an assessment tool that can be used to plan for end of life care

2.5 Describe how risks can be managed to support the individual to achieve their goals, aspirations and priorities

2.6 Explain how to apply the care planning cycle in a person-centred way

2.1 Why it is important to ensure that the individual is at the centre of all end of life

care planning Person-centred care

This is a term that is often used and it may be something that you have heard of. But what is it, and what does it involve?

A person-centred approach puts the person, not their illness or condition, at the centre. The needs and feelings of each person are the focal point around which everything revolves.

Person-centred care is a care approach which aims to help you and other care workers to see, value and treat people as individuals who have led, and are still leading their own unique life.

If, as a care worker, you only think about the illness rather than the person, then it is easy to forget that people are all different, as we all are. None of us are the same – we all have had different experiences of life as we have grown, we all have different personalities, likes and dislikes.

Because all of us are so different, everyone’s experience of illness and the process of dying will also be different. Every one of us deals with events in our life differently and this applies to the way we deal with life limiting illnesses and conditions.

Consequently, as a care worker, it will help to think about the person first, i.e. their life history and what they enjoy, and the illness second. If as a care worker you can look behind the condition and see the person, then this will help you to consider how you can communicate with and help the person.

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2.2 Ways to assess an individual’s needs and priorities Obtaining

information about an individual’s needs and priorities

Even though you may not directly be involved in the initial assessment process, it is essential that you are aware of the individual’s needs in order that you can support the person fully. In order to obtain information about a person’s needs and priorities it is essential that you know something about that person. You can:

Speak to the individual and find out more about them, if this is possible. It is extremely important that you consult with the individual, confirm information with them and any changes in their needs. This will involve and empower the individual and ensure that the plan of care meets these needs, acknowledging and addressing changes as they occur. In some care settings obtaining information from the individual may be more difficult. This may be because a client has no speech, a lack of insight into their needs and priorities, such as clients with dementia, or those who are unable to communicate due to an unconscious state. It is imperative that you seek guidance and support in order to fully meet the needs of these individuals.

Read the individual’s care plan where the individual’s needs, likes and dislikes should be outlined.

Liaise with other care workers, it is essential that the individual’s needs and priorities are communicated to all staff, especially when:

the individual’s ability to communicate changes

the staff on duty are unfamiliar with the individual

In preparation for and during and after review meetings

Liaise with key people such as family and friends of the individual. If an individual is not able to express their needs to you, family and friends may be able to give valuable information. Family and friends may have been the first to notice and alert health care professionals to any difficulties and may encourage the person to seek help.

Liaise with other health care professionals, it is essential that any assessment of needs and priorities take into account the person as a whole.

How to find out the life history, preferences, wishes and needs of an individual The

meaning of life history work

This is the process of finding out who a person really is. It is not just about compiling a list of what the person has done, where they lived, etc.

Each of us is formed by our past life. We all have a life history. It is made up of the things which have happened to us in our lives and the way they have affected or been affected by our own personality.

Our own story of our life is part of the story of our family; that is our identity.

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Ways to collect life history information

A profile may include an individual’s:

Likes and dislikes

Values and beliefs

Life experiences, events and encounters

Significant people, places and objects

Disappointment and achievements

Routines and habits

Talents, hobbies and interests

Work life and education.

The obvious place to start, and one which is often overlooked, is to talk to the person themselves about their life. Many individual care workers have a lot of information about individual people but the only place it is recorded is in their heads. This means that when they are off duty the information is not available for other staff to use to help the person.

Avoid any distractions, interruptions such as telephones, television, passers- by,

etc.

Give the individual your full attention, concentrate on what the individual is

saying - not what you are going to have for lunch

Look interested in what the individual has to say, even though you think that what

the individual is telling you is unnecessary and boring, remember that all information

is relevant.

Stay directed and focus on the individual’s feelings

Allow the individual to complete what they are saying and avoid interrupting the

individual whilst he/she is talking.

Try to use positive non-verbal cues to encourage the individual, for example,

maintaining eye contact, facial expressions and touch, and be aware of your facial

expressions and body language.

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Ensure that you do not pretend to understand what the person is saying, if need

be ask questions to help understanding

Ensure that any feedback you give is clear and unambiguous

Give minimal prompts in order to acknowledge that you are listening and that you

are interested, for example, nodding or shaking your head or simply saying ‘yes’.

Be well timed and vary your responses, ensure that you reflect back to the

individual during brief interactions, for example, “If I understand correctly you feel

that…”

Try not to put your own feelings, ideas and opinions on to the individual and hold

back the need to respond with advice or an opinion unless asked to.

Be aware that the person's feelings and perspectives may not be the same as

yours

Listen to the person in order to understand them rather than to achieve an

agreement

A life history is not something which is completed in one session on one particular day. Information comes gradually from several different sources. Personal care sessions when you are alone with the person will often be the time and place where people’s stories are told about their life. It is important to record these.

Friends and family are another rich source of information about the person. Some families will want to pass on as much information as they can and may find that writing a mini biography about their relative helps them over the period when the decision is made to move the person into a care home. Others will not. There will be many reasons for this. Care staff have to work with what life history information is available.

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Recording needs and priorities

It is essential that any information about the individual’s need and priorities is documented. This will facilitate the whole care planning process and ensure that:

The information is available to all who have a right to access it

All progress is monitored

Care staff are fully aware of the needs of individuals

Individual’s needs are fully met

Continuity is maintained

Any changes are recognised

Information is not forgotten

Mistakes and omissions are less likely

It is essential that all staff are fully aware of the needs and priorities of individuals and it is essential that all information is checked with the person who documented it in order to ensure accuracy. The consequences of misunderstanding or misinterpreting information can be very serious and may lead to individuals not being able to communicate their needs. This could lead to deterioration in the individual’s mental and physical health. Inaccuracies and omissions could lead to staff unintentionally mishandling situations with the result that communication breaks down or fails to develop at all and needs and priorities are not met.

2.3 Tools that can be arranged to inform the assessment The

Common Assessment Framework

The Common Assessment Framework is a standardised approach to conducting an assessment of a person’s needs and how these should be met.

It is intended to provide a simple process for a holistic assessment of a person’s needs and strengths, taking account of the role of family, carers and the environment, that can be used by all agencies.

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Social services

Social services provide a range of services which support the palliative care approach.

The services may include:

Conducting a needs assessment

Conducting a carer’s assessment (i.e. family and friends who provide care)

Providing home care and sometime ‘meals on wheels’

Providing support and advice through its community and support teams and

provision of domiciliary care support

Running day centres or resource centres

Providing residential care

Providing hospital social work teams

Providing advice and assistance regarding benefits via a welfare benefits team

Assessment is the first part of the nursing process and is very important for care planning. Staff need to be aware of the importance of making specific and individualised assessments (Davis et al 1994).

According to Roper, Logan & Tierney (1999) assessment means:

Collecting information from/about the person

Reviewing the collected information

Identifying the person’s problems

Identifying priorities among problems

It should be noted Roper, Logan & Tierney refer to problems only, rather than ‘need’. It has been said that this model focuses on physical attributes only, leading to labelling and ignoring psychological and social aspects of a person.

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Other models/tools What is a model?

A model is a way of representing something or a tool that tries to explain something and by so doing promotes a better understanding. Nursing/Care models have been described as:

“A framework to guide us and offer us controls which are measurable” (Benner & Wrubel 1989)

Guidance about ideas, beliefs and values that underpin nursing/care practice. A link between what care may be required to meet needs and the way it is provided to meet individual needs

How things could or should be

In simple terms - a guide, a pathway to follow, keeping us on the right track, to guide our practice and help measure the outcomes.

Choosing a model

You may be guided in this choice by your organisation, check your organisation’s local policies.

There are numerous models available, some are quite generic in their format and others are specifically designed. Remember, models are not laid down in tablets of stone and can be applied and adapted to meet the needs of individual clients, who are unique. This is known as “inductive reasoning”, whereby generalisations and knowledge are generated from observation (Pollit and Hungler, 1995).

Orem’s Self Care Model - leads us to believe that clients expect to learn about themselves and how to manage problems in meeting their own needs, with those who are significant to them. This may well be the case for some people but not for others.

Maslow’s Hierarchy of Needs – meeting needs should be prioritised in the order that is most important to the client. Therefore it may be difficult to apply Maslow’s Model as the model focus is on prioritising on physiological needs first before progressing to others.

Roper, Logan and Tierney’s Activities of Living – it has been said of this model that it focuses on physical attributes only, leading to labelling and ignoring psychological and social aspects of a person (Rourke 1990). However, it appears to be the most widely used model and it does address activities that are essential to the process of living.

Mental health assessment

Cognitive assessment tools such as the Abbreviated Mental Test Score (Hodkinson 1972) and Mini Mental State Exam (Folstein et al 1975) are often recommended as part of nursing assessments for older people. The Mini Mental State Exam is a brief quantitative measure of cognitive status in adults. It can be used to screen cognitive impairment, to estimate the severity of cognitive impairment at a given point in time, to follow the course of cognitive changes over time and to document individuals’ response to treatment.

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The BASOLL (Behavioural Assessment Scale of Later Life, Brooker 1997) is said to be very helpful in care planning with some elderly clients. It is used to assess the client’s level of functioning and consists of six scales:

Self-care

Memory and orientation

Challenging behaviour

Mood

Sensory abilities

Mobility

Dependency is then scored from interpretation of the data. Pain assessment tools

There are a number of pain assessment tools in use which will be covered later in the programme.

Pressure ulcer risk assessments

The Waterlow Score (Waterlow 1985) is a commonly used pressure ulcer risk assessment, variables in use are build/weight for height, continence, skin type, mobility, sex, age, appetite, tissue malnutrition, neurological deficit, surgery/trauma and medication: the higher the score, the higher the risk. This assessment tool was developed for use in a variety of clinical settings and makes suggestions for pressure reducing/relieving equipment, based on risk score.

There are many assessment tools available, e.g. continence assessment, nutritional assessment, oral health assessment and pressure ulcer risk assessment. Others will be found in local and organisational policies.

Assessment of the client should be a continuous activity, not only to be undertaken on admission. Assessment is not a rigid routine to be carried out at a set time in a set pattern; it is an on-going process, which should be individual to the client.

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2.4 An assessment tool that can be used to plan for end of life care The

Preferred Priorities for Care Plan

“A key goal of this work is to enable more to die where they choose, usually at home, in a care home or hospice, and reduce the numbers who inadvertently and often inappropriately die on acute hospital wards. But real choice and self-determination is more than this, and also involves proactive care, constantly listening to the clients’ needs and thoughts, helping them think ahead with the use of an advance care plan, organising care in response to these needs, and at all times treating them with the respect and dignity that is their birth right as well as their ‘death-right’. The preferred place of care plan was developed so that dying people and their families could have help to decide where the person wished to die. A record is made and this information goes with the person wherever they are cared for throughout their care pathway.

The Preferred Priorities for Care Plan is a client held document which records and facilitates choice in relation to end of life issues.

The preferred place of care plan should include:

A family profile and carer needs

The person’s thoughts about their care

Their choices and preferences including any details with regard to Advance Care

Planning, Advance Directive and/or decisions regarding cardio- pulmonary

resuscitation (CPR)

The services that are available in a locality and being accessed by the person

Changes in care needs

The Holistic Common Assessment Framework (as described in Learning Outcome 2.3) and the Liverpool Care Pathway (Unit 1 Learning Outcome 3.1 and 3.2) may also be used.

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2.5 Managing risks Why risk-taking can be part of an individual’s choice

Care organisations should ensure that all individuals’ rights and choices are respected by giving the individual freedom to take risks. Every day we all take risks. This is something we are entitled to do, as are the individuals we care for.

Generally, we are aware of the risks we take and we have sufficient information to decide whether we wish to continue with the activity that carries the risk. However, as care workers we do have a duty of care and by carrying out risk assessments we make the attempt to balance risk taking, rights and responsibilities.

We assess what the risk is and what measures can be implemented to try to reduce the risk; there may be occasions however when it is not possible to reduce or eliminate the risk and the client has to be able, and has the right, to make the final decision regarding whether to take the risk. There are also occasions when, following assessment, we as health care workers identify risks that clients may not have considered for themselves, for example, nutritional assessment or pressure ulcer assessment. Our communication and explanation to clients in these instances is obviously of utmost importance.

Pritchard (2003) has done some excellent work on risk assessment and she advises asking several basic, but important, questions:

What does the client want to do?

What will he/she get out of taking the risk?

What might stop the client getting the benefits or cause the dangers?

What is the worst that can happen?

Pritchard then describes the ‘principles of risk’ as being:

Self-determination – capable of making decisions, living life to the full

Independence – striving to maintain or improve

Client focus – wishes should not be over-ridden by others

Equal opportunities – not to discriminate, e.g. on the grounds of age

Confidentiality – information may have to be shared

Staff support – must be supported by policies

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Pritchard then goes on to consider the ‘key stages’ of risk assessment. These are:

Getting to know the client

Talking with the client about risk taking

Liaising with others

Completing paperwork, for example, risk assessment forms

Predicting likelihood of harm or danger

Grading the level of risk (is the risk high, medium or low?)

Developing the care plan

Setting a date for review

Balancing individual choice with risk

Balancing client choice with risk is a very difficult issue to deal with, as a person is entitled to make their own choices in life and therefore their own risks. For example, an individual with emphysema may decide to continue smoking despite knowing they are accelerating the disease process.

Even though the risk to the person’s health is considerable care professionals have to accept that the individual is entitled to make an informed choice to take the risk, and that they have no power to stop the person taking part in the activity.

The only restriction the care organisation can impose on the individual is where they can and cannot smoke.

Individuals, who self-neglect or self-abuse through choice, have a right to choose but have a responsibility to those around them. They are not entitled to make choices that put others at risk. Social services and other agencies must become involved to protect all those involved. It is important that you understand this, as you have a ‘duty of care’ to all your clients and a responsibility to others. You must report any concerns you have to your manager.

For those clients who self-neglect or self-abuse through vulnerability, it is important that health care professionals become involved, if that risk becomes so great that the health, safety and well-being of the client and others, is put at risk.

On some occasions individuals are aware of the facts and still put themselves in, what you may consider is harmful or dangerous circumstances. You may find some issues hard to come to terms with, that because of religious or cultural conviction a person would refuse treatment or care that could potentially improve the quality of life. As with all other decisions regarding their care and support, competent adults have the right to make these choices and they must be respected by staff who provide the support.

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You must ensure you respect their wishes and choices that promote independence and gives them control of their lives, however much you may disagree with their decisions. Providing the individual has been given all relevant information, the decision lies with them. Your role and responsibility is to ensure you work to codes of practice, health and social care values and organisational policies and procedures at all times, including reporting and recording. There needs to be a full risk assessment of activities chosen by individuals and this may be a role you undertake in your setting. You must remember that the aim of risk assessments is not to stop people doing things they enjoy but to identify the danger and take action to minimise it.

2.6 Applying the care planning cycle in a person-centred way What

is care planning?

Every aspect of care that you provide for individuals should be governed by a process where individual needs are identified and assessed, care is then planned and implemented and is then reviewed and evaluated in order to see whether it has been effective or not. The individual should be involved in all aspects of the care planning cycle.

The Cyclic Care Process

Firstly each individual is assessed to identify his/her needs and any problem/obstacles to meeting their needs

A written care plan is then prepared with the individual or their agreed representative/advocate and the care team to guide nursing/care intervention

This is then implemented

Following its implementation, within a set timeframe, evaluation takes place to see if the care/nursing provision is meeting the needs

After evaluation, assessment takes place again and the cycle continues

Implementing

Planning Evaluation

Assessment

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Assessment

The first point of any assessment must be with the individual; the health care worker begins by asking the individual about himself or herself. Other people, such as family members, carers, social workers, community nurses, hospital staff and general practitioners are also valuable sources for the assessment process. Information gained from others is classified as ‘subjective’, whereas information such as measurements is ‘objective’.

Usually the assessment process starts in the individual’s home, hospital or other care establishment, that is before admission to your care home, unless it is an emergency admission. The assessment process then continues at admission.

Planning

Planning is the second stage of the care planning process and should occur following a comprehensive assessment of the individual’s needs. The plan should be written with the individual and is designed to meet the health, psychological and social care needs of the individual.

It involves identifying:

What the individual’s needs and/or problems are

An objective (goal or outcome)

How the objective is planned to be met (actions/interventions) and when the goal will be met

When the actions will be measured and reviewed

The plan should also prioritise which needs are the most important and this should be fully discussed with the individual. A realistic time frame should be given to each plan and a specified evaluation date.

Planning should take time and should not be rushed. It is better if the nurse or health care worker compiling the plan knows the individual well and has a good relationship with them as this will enable the individual to feel more comfortable during this process. When building up a plan of care it is nearly always necessary to refer to information provided by other professionals and sometimes from family members of the individual.

It is imperative that the individual is made aware of this and that they give their informed consent for discussions to take place with others; whenever possible the individual should be present at discussion meetings. The planning stage of the care planning process should involve asking the individual questions, reviewing all other documented evidence, i.e. general and risk assessments, information received on admission and then deciding what needs and/or problems the individual has and what will require addressing. The nurse or health care worker can then, with the individual, prioritise the needs, identify the goals and state how the goals will be achieved and by when.

How to take into account the history, preferences, wishes and needs of the

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individual when planning care and support

When planning care that is holistic and person-centred the care worker must take into account the individual’s life history to meet their preferences and wishes. For instance, if the individual has spent several years visiting the grave of a loved one on a Sunday, to tend the site and to replace old flowers, having knowledge of this means that appropriate arrangements could be made to ensure that this important area of the individual’s life continues and is supported. Alternatively to ensure the individual’s preferences are taken into account, such as their choice of soap brand, toothpaste, food preferences, newspaper, music, TV programmes would ensure a person-centred approach to care.

The individual’s rights, including the right to choose must be upheld. Incorporating their life history can identify their preferences

These may include choosing:

Diet and fluids

When to have visitors

Recreational activities

How the care setting is organised and the care they receive

Hygiene facilities and standards

To care for themselves

To communicate using their preferred method and language

The benefits of life history work to the individual concerned

The individual will perceive that care workers are taking an interest in them and value them as an individual. Involving the person in life history work can be very fulfilling and prove therapeutic for the individual concerned. People derive enjoyment from the relationships formed with care staff who know them well and are able to use their knowledge of the individual to plan care which is truly person- centred.

Implementation

Implementation is the third phase of the process of nursing/care. The Little Oxford Dictionary (1969) defines ‘implement’ as “carry into effect”, therefore the implementation stage of the process of nursing/caring involves carrying out the plan. Stewart (2003) describes implementation as, “putting the course of action into motion (specific interventions on the care plan)…” It is very much the ‘doing’ phase. Roper, Logan and Tierney (1996) state, “Traditionally, nursing (caring) has been associated with ‘doing’, so nurses/health care workers have little difficulty in knowing how to go about this phase of the process”. However, there is more to implementation than just ‘doing’. It is about following a plan of care, ensuring that staff are knowledgeable about the individual’s care goals (this includes prioritising, delegating and recording), all of which serve to make the implementation phase a little more complicated than first impressions would suggest.

It is extremely important that health care workers recognise individuals as partners in their care and the contribution they can make to it.

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How using an individual’s care plan contributes to working in a person-centred way

An individual’s care plan is an important source of information where day to day requirements and preferences for care and support are detailed. This document gives personal information about all aspects of care for the individual which would include their cultural and religious preferences. These could possibly influence what the individual likes to eat and drink, how their personal care is completed, whether they prefer a bath or shower, how often they like to bath or shower, what their preferences are with toiletries or how often they like to visit the hairdresser/barber.

Care plans should also document the individual’s past history, such as their occupation, hobbies, interests, achievements. It may also include future wishes, such as goals or desires.

This helps the care team to have a clearer understanding of who the person is. The individual themselves should be involved in, and have knowledge of, the care plan and be able to understand and access the contents in order that they are able to fully participate in their care and contribute towards decision making.

All care professionals should read the care plan to inform their practice and enable them to care for the individual in a holistic, person-centred way. It is also essential that entries made into the care plan reflect the person’s needs, wishes and preferences.

The care plan should be reviewed at least monthly and when there are any changes in the needs of the individual to ensure that the care planned continues to meet their needs. Any changes made to the plan of care must continue to place the individual at the centre of all the care team do and must be understood and agreed by the individual.

Making records

Implementation is about carrying out nursing/caring activities and it is also about recording those activities.

It is essential that you record what you have done, outcomes of communications and any problems you have encountered. This should be within confidentiality agreements and according to legal and organisational requirements.

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Learning outcome 3

The learner will:

Understand advance care planning. The

learner can:

3.1 Explain the legal status and implications of the Advance Care Planning process

3.2 Give examples of when Advance Care Planning would be used

3.3 Explain the meaning of ‘Informed Consent’

3.4 Explain how to communicate the Advance Care Plan to others

3.5 Describe how to work in a way that supports the ‘best interests’ of an individual unable to participate in decision making

3.1 The legal status and implications of the Advance Care Planning process

Advanced Care Planning

This involves assessing a person’s needs before they enter the final stages of their illness and then planning their care accordingly. Advance Care Planning allows for the person to plan with the care team where they wish to be cared for and where they prefer to die.

Discussions can take place to plan the action required if certain circumstances occur, e.g. poor symptom and pain control, social problems, etc. This will hopefully avoid unrelieved suffering and emergency admissions to hospital.

In England, Wales and Northern Ireland, the Mental Capacity Act (2005) gives legal force to living wills as long as they are properly drafted and applicable to the situation in which it specifies. In Scotland, the Adults and Incapacity (Scotland) Act (2000) allows for a designated decision-maker called a ‘welfare attorney’, who has the legal power to refuse treatment on behalf of an incapacitated adult.

Implications

Advance Directives or Living Wills should be reviewed from time to time because people’s views about treatment can change as they become more ill. People may change their mind regarding decisions previously made. This must always be accepted and decisions honoured, ensuring that people are not refused treatment they do want to receive. This should be respected even if care professionals do not agree with the decision.

Family, friends or carers may have difficulty accepting an individual’s advance care planning decisions, such as an Advance Directive which contains instructions not to resuscitate. Effective communication, giving clear, understandable information and encouraging the individual to discuss all decisions with those significant to them is essential. Family, friends and carers should be encouraged to ask questions if they have any queries about the individual’s care and treatment.

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The Mental Capacity Act (2005) The Mental Capacity Act protects people who cannot make decisions for themselves. This could be because they have a learning disability, mental illness, dementia or brain injury. The aims of the Act are to:

Allow people to make their own decisions

Allow people to make their own decisions regarding treatment and care

Let people appoint someone to make decisions on their behalf at a future time, in the event they become incapacitated

Allow the NHS or Local Authority to appoint an advocate in the event that a person does not have any available family or friends to consult

The Act also provides protection and guidelines to families who believe they are acting in their loved one’s best interests

Carers must always assume that a person has the capacity to make their own decisions and it is important to be able to justify why a person cannot make the appropriate decisions for themselves.

The Mental Capacity Act states a person cannot make a decision if:

They cannot understand the information required in order to make a decision

The person cannot remember the information

The person cannot use the information provided to them in order to think about their needs and desires

The person cannot communicate their decision

If any of these criteria are met, The Mental Capacity Act allows another person to make a decision or help the person make a decision.

The person allocated to make a decision on behalf of another must support them to participate in the decision making process. This could simply be by allowing the person to be there, presenting information in a way they can understand and also not assuming that the person wants a certain outcome. It would be vital to include the person’s wishes, beliefs and values and obtain the views and ideas of other people and close family or friends.

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Deprivation of Liberty Safeguards (DOLS)

Deprivation of Liberty Safeguards (DOLS) were added to the Mental Capacity Act in April 2009 and also apply to people who are unable to make their own decisions.

The Deprivation of Liberty Safeguards now protect people who lack capacity and provide guidelines for their carers when making decisions. People now have the right to be cared for in a way that gives them their freedom. If liberties are denied then there needs to be a justified reason under the Mental Capacity Act.

Example of deprivation of liberties could include:

Care staff controlling all the decisions relevant to a person’s life

Not allowing people to leave the care home

Not allowing family or friends to visit

Restricting family or friends visiting

Like the Mental Capacity Act, people covered under DOLS must have a mental illness, dementia, learning disability or some other condition which impairs their ability to make choices. They must live in England or Wales, be over 18 years old and be in a care home or hospital, but unable to give their permission to be there.

The process of safeguarding people’s liberties is as follows:

1. Carer acts as a managing authority

2. Managing authority writes to a supervisory body (usually local authority or

health trust)

3. Supervisory body decides if DOLS applies to the case

4. A “Best Interests Assessor” will write a report communicating the decision

5. If Deprivation of Liberties is granted, this will apply for the shortest possible

length of time, but would be for no longer than a year.

6. The person and/or their carers can ask for a review if they do not agree with the

decision or if the situation changes.

7. If there is still no conclusion after review, then an application can be made to the

Court of Protection, who will then decide if DOLS applies.

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3.2 When advance care planning would be used

Advance Directive/Living Will

Some people have very clear views about what treatment they would or would not like to receive in the final stages of an incurable illness. An individual who is fully aware and competent has the right to choose whether or not to continue with medical treatment, and no other adult has the right to make these decisions for the individual.

A living will or an advance directive is a document that enables someone to state, in advance, what treatment they wish to receive and what treatment they wish to refuse when they are no longer capable of making their wishes known. It is a form of anticipated consent.

Someone who is rational and competent to make decisions makes a written statement about what they would like to happen if they become seriously ill and for some reason can no longer consent to or refuse treatment because, for example, they are unconscious or have developed dementia. The statement usually expresses a wish that his or her life should not be artificially prolonged by medical intervention.

Advance Care Planning can include, for example, Advance Decision to refuse treatment and a document containing instructions, Do Not Attempt Cardio-pulmonary Resuscitation (DNR).

An Advanced Directive could be helpful when difficult decisions about care or treatment have to be made.

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3.3 The meaning of ‘informed consent’ Defining the term consent

Consent can be defined as “informed agreement to an action or decision”; the process of consent will vary according to an individual’s assessed capacity to consent. Consent may be implied, written or verbal.

The importance of gaining informed consent when providing care or support

Individuals can only give consent to treatment if they understand the reasons, the benefits, and any possible disadvantages of the care planned.

By withholding information about their treatment means you are withholding their rights and therefore they are unable to give their informed consent to care planned for them, or be involved in the care planning process.

In order to identify and meet the needs and preferences of the individual, it is important to have as much relevant information and advice as possible, available through communication and assessment of the individual. Consent should never be considered a ‘one-off’ event.

How to establish consent for an activity or action

It is important that, as a care worker, you establish that an individual consents to care and support that you and others provide, and that you know how to do this. This is called informed consent and it is their legal right.

The consent of the individual is established with regard to the sharing of confidential information, within a care setting, between care professionals who have the right and need to know. Continued sharing of this information between care professionals is called implied consent, as it is assumed that the individual wishes the care team to continue to share information unless the individual states otherwise. This is justified by the need to share information that will benefit the individual’s health and well- being and ensure their care needs are fully met.

Consent can be obtained verbally. This involves clearly explaining to an individual the reasons for a particular aspect of care and support, establishing their understanding and receiving their consent verbally. This can be via the spoken word, sign language or by the use of technology. Establishing consent using the spoken word requires the care worker to ask the appropriate question at the appropriate time, for example: “Would you like a bath?”, “Shall I run you a bath now?” or “What time would you like your bath?”, which requires the appropriate answer indicating consent to the activity. If the individual needs to communicate using sign language then the same questions could be asked using sign language or cue cards. Care workers should ensure that hearing aids are worn, switched on and in good working order prior to asking questions and gaining consent.

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In addition, you should explain the use and purpose of the care activity and any related equipment, to the individual, establish their understanding and ask them directly if they wish to proceed. This will give them an opportunity to ask questions and express concerns or obtain information from other care professionals and to then decide whether or not to consent. You should always record consent and how it was obtained in the care plan.

Some individuals may be able to understand information verbally but are only able to respond non-verbally in the form of gestures, facial expressions and other body language, such as nodding. It is particularly important that you establish the way they convey their consent and that this is recorded. For some people who are very disabled or incapacitated blinking their eyes may be their only means of communication, therefore, correct interpretation of non-verbal communication is vital.

Written consent

Consent may be also obtained in writing. This is less common in general day to day care support, but is used to obtain consent for surgical procedures, certain medications, investigations and treatments. In this case the individual must be provided with written information which must be supported by clear and understandable verbal information.

Written consent forms are often used with self-administration of medication following an assessment of the individual’s abilities. This consent would be reviewed on a regular basis or as the need arises where agreed compliance fails.

Advice must be taken from management who will act on guidance contained in legislation and organisational policies and procedures.

The steps to take if consent cannot be readily established

In certain care settings and with certain individuals, obtaining consent may be more difficult. This may be because a client has no speech, a lack of insight into their communication needs, such as clients with dementia, or those who are unable to communicate due to an unconscious state. You will need to seek advice and support to meet the individual’s needs.

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3.4 Communicating the Advance Care Plan to others

The Advance Care Plan should be a full written record containing all relevant documentation. The plan should be made available to all those with a right and need to know, including the individual, their family, friends and carers (with individual’s consent) and the multi-disciplinary care team.

Care staff should always be prepared to communicate the plan to others, giving clear, accurate information and explanations including details of any Advance Directives, Advance Decisions to refuse treatment and any DNR instructions.

This may be done in a number of ways, including:

Face to face informal discussions with other staff, and/or the individual, their family, friends or carer

During meetings

Handovers – This is carried out between shifts, using the care plan as the focus. Care workers share information about the individual and their planned care. This may lead to discussions about the effectiveness and implications of planned interventions. This type of communication helps to promote continuity of care.

3.5 Supporting the best interest of an individual unable to participate in decision making

Lack of mental capacity and consent

Certain individuals may lack capacity to make decisions and therefore are unable to give informed consent. It is important that you are aware of, and have an understanding of, the legislation relating to mental capacity.

The reasons for and aims of the Mental Capacity Act 2005

The Mental Capacity Act 2005 provides a statutory framework which aims to empower and protect vulnerable people who are not able to make their own decisions. It makes it clear who can take decisions, in which situations, and how they should go about this. It also enables people to plan ahead for a time when they may lose capacity.

Definition of the Mental Capacity Act

‘Mental capacity’ within the context of the Mental Capacity Act 2005 refers to ‘an individual’s ability to make a decision’. There are various differing factors which can affect an individual’s ability to make a decision, including conditions such as a stroke, dementia, learning disability and physical illness, head injury, drug or alcohol intoxication, mental health problems, trauma, loss and bereavement. In addition, conditions such as an intimidating or unfamiliar environment can also affect capacity. DOLS and the Mental Capacity Act have been covered in Learning Outcome 3.1.

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Defining lack of mental capacity

If mental capacity refers to an individual’s ability to make a decision then we can assume that there may be times when individuals may lack the capacity to make a decision, and there are several factors that can influence this.

Within the context of the Mental Capacity Act 2005, a person is deemed to lack capacity if because of an impairment of, or a disturbance in, the functioning of the mind or brain (which may be temporary or permanent) he/she cannot do one or more of the following four things:

1. Understand the information relevant to the decision

2. Retain that information long enough to make the decision

3. Weigh up the information available to make the decision

4. Communicate their decision (whether by talking, using sign language or other means).

Determining capacity

A person is unable to make a decision if they cannot understand information relevant to the decision, retain the information, use or weigh the information to make the decision, communicate the decision.

The assessment process

The Mental Capacity Act 2005 sets out the best practice approach to assessing capacity. The steps taken to initially determine whether a person lacks capacity will depend on the individual circumstances, and the urgency of the decision required to be made, as the assessment of capacity should be specific to the decision needing to be made at that particular time. The Code of Practice sets out quite clearly the details that are involved in assessing an individual’s capacity to make decisions.

The Code of Practice identifies a two stage process to the assessment of capacity and identifies two questions that need to be asked:

Stage 1: Does the person have an impairment of, or a disturbance in the

functioning of their mind or brain?

If this is so, the assessment will move on to stage 2:

Stage 2: Does the impairment or disturbance mean that the person is

unable to make a specific decision when they need to? This two stage assessment process must be followed and the assessor must be able to demonstrate that it has been followed.

.

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The Code of Practice states that relevant information must include:

the nature of the decision

the reason why the decision is needed

the likely effects of deciding one way or another, or making no decision at all.

Assessing and reviewing capacity is not just a one off event. It is essential that capacity is reviewed on a regular basis, as people can experience changes in their decision making capabilities. Capacity should always be reviewed whenever a care plan is being developed or reviewed, at other relevant stages of the care planning process, and as particular decisions need to be made.

Assessing capacity correctly is vitally important to everyone concerned with the Act, and there are a number of reasons for this:

A person who is assessed as lacking capacity may be denied their right to make a specific decision, this is particularly true if others think that the decision would not be in their best interests or could cause harm.

If a person does lack the capacity to make specific decisions, and this has not been assessed, then that person may make a decision they do not really understand. This could cause harm to the person or put the person or others at risk.

The person who is responsible for undertaking the assessment is accountable for his or her actions; and the person who does or does not undertake an assessment at the appropriate time will be called to account for anything that may happen as a consequence of their actions.

So we can see it is absolutely essential that an assessment is carried out whenever there is doubt about a person’s capacity. It is also vital that the person who does an assessment can justify their conclusions.

Who should assess capacity?

The best person to assess an individual’s capacity to make a decision will usually be the person who is directly concerned with the individual at the time the decision needs to be made. This means that there could be different people involved in assessing someone’s capacity to make different decisions at different times. Consider the following information.

Where more complex decisions need to be made, a specialist opinion on the person’s capacity may be necessary, for example, an assessment may be requested from a psychiatrist, psychologist, a speech and language therapist, occupational therapist or social worker. But the final decision about a person’s capacity must be made by the person intending to make the decision or carry out the action on behalf of the person who lacks capacity and not the advising professional.

Any person, regardless of their professional status, who takes responsibility for assessment, must have the skills and ability to communicate effectively with the individual being assessed. If necessary, they must engage in professional help in order that they can communicate effectively with the person. Advocacy

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This is a process which enables those unable to fully exercise their rights, to have their rights upheld. This is achieved by representation from a third party. The advocate may be informal or appointed by the court. When you identify clients who may be unable to exercise their rights, you may be in a position to speak on their behalf. In certain circumstances this may not be possible, as it may be beyond your role and responsibilities. You must then ensure that you discuss issues with your manager, who will be able to arrange advocacy services for your client.

It may be possible to enlist the support of an independent advocate to represent the interests of the client. If there is conflict of interest between the client and the care team, an advocate can make the client feel they are being listened to and have someone on their side. This may have the effect of taking the pressure off the client and easing the tensions that exist between the client and the care team. This may result in the lines of communication remaining open so that a solution, agreeable to all parties, can be reached.

Diploma in End of Life Care - Level 3 copy.pdfModule 3 - Assessment and care planning in end of life care.pdf