Unit 2 Communication during end of life care About this unit

This unit aims to give learners an understanding of the importance of communication when supporting an individual and others during end of life care.

Learning outcome 1

The learner will: Understand communication skills in the context of end of life care. The

learner can:

1.1 Explain how to support communication in ways that are:

Non judgemental

Empathic

Genuine

Collaborative

Supportive

1.2 Explain how the use of non-verbal methods of communication can aid understanding

1.3 Explain the skills required of an active listener

1.4 Explain why silence is sometimes an important part of communication in end of life care

1.1 How to support communication Being

non-judgmental

Care workers must always use a non-judgemental approach and never allow judgemental attitudes to affect the way they communicate with individuals. These attitudes can be formed for a variety of reasons.

Defining discrimination

To discriminate or oppress is to treat people unfairly because of who they are or because they belong to a certain group of people. Whatever the reason the intention is to make people feel bad about themselves and the effect is always negative. Anyone may be discriminated against, but certain groups are more likely to be subject to negative discrimination. Examples may include racial discrimination, disability discrimination and sex discrimination.

Stereotyping – the meaning and effect

This is the process of making assumptions about an individual based on the group which you feel they belong. The way in which we view certain sections of the population leads to stereotyping. You may draw conclusions about their behaviour, diet, beliefs, dress or even intelligence, based on unreasoned opinions.

Labelling – the meaning and effect

Labelling is to describe a person by the use of a ‘label’ or word which creates a certain image and can give a negative impression of that person.

The image the person has of themselves can be affected and confidence and self- esteem can be lost. Individuals who are labelled may have their rights withheld and the quality of the care they receive may suffer. We may spend less time with individuals that we feel uncomfortable with, or are even fearful of, because of the image we feel they project.

In a care setting this may affect:

The way in which we relate to people

How we communicate with them

The quality of care they receive

Therefore, the way we speak about people and the opinions we form can directly affect their experiences of the care sector.

Defining equality

Equality means 'having the same importance and deserving the same treatment'. It does not mean treating everybody the same, but it does mean giving everyone the same opportunities and the same level of respect.

Equal opportunity means freedom from discrimination in areas such as education, employment, housing, and health care. Discrimination means treating people differently for irrelevant reasons, such as their gender, where they live, race, age, religion or sexual orientation, rather than judging people on their merits.

Empathic

Good communication leads to empathy. Empathy is extremely important when discussing personal and sensitive issues with clients, it is about developing and enabling an openness and rapport between people, it is the ability to identify with and understand another person’s needs, feelings or difficulties, to put yourself in their situation and understand how they must be feeling. This may however, be very difficult, especially if you have not experienced what the person is going through, but the best way to build empathy is to help the other person feel as though you understand what they are going through.

This involves actively listening to what the individual is saying to you. Demonstrating an empathetic approach to communication will encourage a better understanding between yourself and the individual and will increase the likelihood that you as a person will be respected.

Genuine communication – being honest

It is inevitable throughout the communication process that clients, their friends and relatives and other key people will ask questions, which at times may be difficult to answer. The people that you care for have a right to ask questions and to receive open and honest responses, providing that confidentiality is maintained. It is important that an open culture exists that encourages clients to ask questions and to voice their concerns. A regime that discourages questioning and ignores concerns is also failing in its duty of care.

Honesty is important in meeting the needs of individuals within your health care environment. It is absolutely essential that you are honest with clients. If they ask you difficult or sensitive questions, under no circumstances should you ever give false or inaccurate information. If you are asked a question that you find difficult to answer, you must seek advice from a senior colleague or your manager. This will enable you to address the individual’s concerns and answer questions, or provide referral to other members of the team who may be able to help.

It is also essential that any information given be clearly documented within the client’s notes. If the person feels that you are approachable and that expressing concerns and asking questions is actively encouraged, he or she will feel more at ease with discussing issues with you. This in turn will help the individual to feel empowered and take control of their lives. Being open and honest is essential in promoting:

The making of informed decisions by clients

Reassurance

Prevention of errors, conflict and tension arising from misunderstandings

Holistic care planning and delivery of care

Client involvement

Difficulties and problems to be identified, action planned and resolutions reached

Identification of aspects of worker’s knowledge and any gaps in understanding and knowledge

Building trusting and therapeutic relationships

Collaborative working – communication is the key

It is vital that any team that operates within your care organisation works effectively. This can only be achieved if each team member understands and fulfils their role and responsibilities. Only then can a team work in harmony to fully meet the needs of the individuals they care for.

The only way to improve collaborative working is to build relationships with people by communicating effectively with them. Some care workers are naturally better than others at this – but it’s a skill that all care workers need to learn, which improves with practice. However, you can learn from watching how others talk/communicate with people.

It is important that all members of the work team learn to listen to each other, the individuals they care for and those significant to them. Views and opinions should be respected and expertise and knowledge used to improve partnership working and provide the best quality care. Any problems, communication difficulties and misunderstandings should be acknowledged and discussed openly and calmly and resolutions agreed.

Supportive communication

There are a number of basic rules relating to supportive communication:

All communication should focus on the individual, their needs, preferences and method and style of communication. Full assessment of needs should be carried out and a care plan developed with the involvement of the individual. All those involved in the care of the person, should be fully aware of the contents of the plan of care and work together to promote effective communication.

When communicating with individuals, it is important that you give them your full attention. This will ensure that you and they are able to communicate effectively, that any barriers and difficulties are identified and strategies put in place to meet individuals’ needs.

It is very important to interpret the needs of individuals and to motivate them to communicate. The way in which you approach individuals and your willingness to help, will create an atmosphere in which they feel relaxed and able to communicate. Patience is essential, as people will feel uncomfortable if they are aware of being rushed, or feel that you are becoming impatient when they are trying to communicate. Provide them with alternative methods to assist communication, and seek the advice and support of key people within and outside your care organisation, to provide extra support.

Whilst encouraging people to communicate you must remember that people should never be forced into communicating. They should be free to choose the use of gestures, symbols, drawing and the written word if they wish, providing this does not interfere with therapy or progress.

Some people may not wish to communicate at all. This may be due to a specific communication difficulty or a psychological or emotional reason. This should be reported so that the person can be referred for assessment by specialists.

In order to effectively communicate you must set the scene.

Right place

Ensure the person has a quiet place to talk with minimal risk of interruption. Ensure that what is discussed is done in private where it cannot be overheard.

Right time

Wait until the person is ready and willing to talk. Asking them if they want to talk may be the encouragement they need. The dying person should always be allowed to decide what is appropriate.

Observation

Carefully observe the person’s body language, their facial expressions, posture and gestures will give you clues as to how the person is feeling and whether they are experiencing any type of pain or uncomfortable symptoms.

Always be mindful of your own non-verbal messages. If, for instance, you do not sit down, maintain eye contact and look interested in what the person is saying they will not be willing to communicate.

1.2 How the use of non-verbal methods of communication can aid understanding

Expressing feelings through body language Facial expressions

A person’s facial expressions can reveal a great deal about how they feel. They can indicate whether a person is happy or sad and also if they are experiencing pain or discomfort.

Gestures

Gestures are very important especially if a person has difficulties with communication (e.g. waving a hand can attract attention) and restlessness can be a sign of pain, discomfort or worry.

Self-awareness

It is extremely important that the care worker is aware of their own non-verbal message they give.

Using non-verbal methods to aid understanding

There are many non-verbal methods care workers can use to aid understanding and it is very important that you are fully aware of these.

Posture – sit down and adopt a relaxed posture. Look comfortable. This will suggest to the person that you have time to listen.

Positioning – Always sitting facing the person. Place your seat so you are next to them. Remove barriers such as tables from between you and the person.

Eye contact – Always maintain eye contact. Looking away frequently can suggest to the person that you feel uncomfortable. However, too much eye contact can appear confrontational or intrusive. Keep at the same eye level as the person otherwise this may make them feel you are putting yourself in a superior position.

Proximity – Space and position - It is important, when communicating with others, to realise the importance of space and position. Different situations and circumstances, with different people, will require us to decide what is appropriate, as far as the distance from the individual and the position you adopt. What is appropriate for one person may not be appropriate for another. We all like our personal space and do not wish people to invade that space, unless we invite them to do so, or that you have a relationship that will allow you to do this,

e.g. close family/close relationships. Certain circumstances within the care setting will allow you to invade that space, e.g. care giving activities. However, getting too close to an agitated individual, for example, can be inappropriate and may exacerbate the situation further. Actions such as sitting, standing or bending down, may convey different things in different circumstances.

Acceptable forms of physical contact

Holding a person’s hand An arm around the shoulders During physical care activities (e.g. bathing, etc.).

This must be agreed with the person and care team and be consistent with the care plan and the needs of the person.

Unacceptable forms of physical contact

Invasion of personal space

When the person is made to feel uncomfortable Inappropriate restraint

Where the contact is abusive (e.g. physical assault or any form of sexual contact). Situations where physical contact can be useful

To communicate care and concern

To aid recognition by a visually impaired person.

Situations in which physical contact must not be used

When cultural issues make contact unacceptable

When the person’s body language suggests this is not acceptable

Where the actions may be misinterpreted.

The appropriate use of physical contact can help to form relationships between a dying person and the care worker. People can be reassured and made to feel valued and cared about. However, all people must be assessed individually as what is considered acceptable and appropriate by one person may not be by another.

1.3 The skills required of an active listener

Communication is not all about talking. Listening has a major role in ensuring that communication is effective. Listening is not just about hearing what is said. It is about understanding and showing this understanding to those you are listening to.

Effective listening can be achieved by the use of facial expressions, maintaining eye contact and appropriate use of body language. Adopting a relaxed posture and looking interested will encourage a person to speak. This is called “active listening”. Showing a person you are listening will make them feel you are interested and that they are valued. Taking care not to exclude the person from the conversation, showing people that you have time to talk and listen and that you are interested in them is vital to maintain self- esteem. There are some principles you can apply:

Avoid any distractions, interruptions, such as telephones, television, passers- by, etc. Give your full attention.

Allow the individual to complete what they are saying and avoid interrupting the individual whilst he/she is talking.

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

In order to acknowledge that you are listening and that you are interested, for example, nod or shake your head or simply saying ‘yes’ – minimal prompts.

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

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

Show the person a relaxed posture – that you are willing to listen and have time for them – sit down

Smile and other use of positive facial expression – this can convey approval and provide encouragement.

Use minimal prompts

Repeat what the person has said (only a few words) to show you are listening

During the conversation, summarise what the speaker has said, to check and demonstrate that you fully understand what has been said. This is a form of reflection.

Effective Listening = Active Listening

Listen for hidden fears - There may be things that a person is fearful about but doesn’t know how to vent their fears. They may give small clues so careful listening is essential. Hesitating or questioning whilst you are talking. Don’t push the person, carefully repeat the question. Be patient, show the person you are supportive and willing to proceed at the person’s pace.

1.4 Silence as an important part of communication

Although silences in conversations can feel uncomfortable it is important to allow these. The skill of knowing when and how long these should be is one that you will learn with practice. Silences give the speaker a chance to think and plan their reply. They are especially useful for those who have problems understanding, hearing or expressing speech. A vital part of your role as the listener is to ensure that silences do not make the person feel uncomfortable or awkward. Silences help the person to gather their thoughts and open up their deeper feelings. It is important to be aware of your own response to silence, e.g. feeling and showing discomfort, and you know how to minimise the possible negative aspects.

Learning outcome 2

The learner will: Understand how to overcome barriers to communication.

The learner can: 2.1 Describe how the following can present barriers to communication:

Tiredness/illness

Stage of end of life care

Language/culture

Fear of dealing with strong emotions

Not knowing what to say

The environment

2.2 Explain strategies that can be used to overcome the barriers identified in 2.1.

2.1 Barriers to communication Tiredness/illness

Individuals may be too tired or too ill to communicate their needs effectively, with fatigue and the effects of illness overwhelming them. Physical effects, such as breathlessness and pain can create significant barriers to communication.

Stage of end of life care

The stage within the process of dying can have a significant impact on the person’s ability to communicate. The progression of disease and the level of consciousness may result in communication being seriously affected.

Language and culture

When communicating with individuals it is important to take into account the barriers that cultural differences may bring. Language differences can create a barrier to communication and it is important to be aware of how you can help overcome this obstacle. Between the health care worker and the individual there may be:

Differences in the use and understanding of individual words

A lack of understanding of language, accents and dialects

Misunderstanding of body language an gestures

Fear of dealing with strong emotions and not knowing what to say

It must never be assumed that health care workers will naturally know how to discuss death and dying and be completely comfortable with this. All care workers, whatever their status, require training and on-going support. There may be many obstacles that prevent care workers using an open and honest approach which may include:

Sympathetic pain – This is the feeling a care worker may experience when communicating with a dying person. The stress this creates may cause distress to the care worker and result in them avoiding situations where they need to communicate or cutting down the time they spend with the person. These feelings may conflict with what the worker has been told about ‘keeping professional distance’ and not becoming ‘emotionally involved’ making them feel inadequate, guilty and unprofessional.

However, it is often impossible not to ‘get involved’ and in palliative care forming an attachment (a ‘bond’) is vital to meet the whole care needs of the individual.

Health care worker status - A care worker may be inexperienced or feeling their status is very junior. They may lack the confidence, experience and training to deal with the difficult issues associated with death and dying. They may also feel unsure of what they should and should not say, i.e. what is appropriate to their role and responsibilities.

Fear of blame – Some care workers may fear they will be blamed if they say the ‘wrong thing’ (especially if they are unsure of what is the ‘right thing’).

They may avoid discussing anything related to the person’s diagnosis, prognosis or death with them for fear of ‘getting into trouble’ with the person, their loved ones and other care professionals.

Fear of reactions – A lack of confidence in how to respond to people’s reactions to death and dying is common amongst care workers. They may have received little or no training in how to respond and may fear their response may be inappropriate, inadequate or ‘wrong’ should the person express emotions such as anger, frustration, fear or sadness or react by crying.

This again may lead to a care worker avoiding the situation. A care worker may feel they have failed if they believe they have not handled the situation well.

Care staff who feel uncomfortable, avoid the subject, or rush care giving activities, do not fulfil their ‘duty of care’. People who are dying may feel their feelings are being belittled or ignored. Always seek advice if you experience feelings of apprehension.

The person who is imparting the disclosure of difficult or sensitive issues may also experience a range of feelings, and having knowledge that you may also feel uncomfortable will help you to deal with the situation and provide appropriate support for the individual. He or she may feel:

Inadequate because of not knowing what to say

Insecure and unsure of how to react

Embarrassed

Uncomfortable with the situation

Frightened of the recipient’s reactions

Fear of expressing emotions

Unprepared

Because every situation is different and the needs of all individuals are different every experience is a learning experience, it is therefore important to reflect on the situation and look at how you coped with it and how you might do things differently in the future. It is also essential that you gain the support of your senior colleagues and your manager.

The environment

It is essential that the environment in which the communication of complex and sensitive information takes place is suitable in all respects. Barriers may be created where there is no private area provided for clients to discuss personal issues. Surroundings may be uncomfortable and not relaxing, with frequent interruptions. Peace,

quiet and privacy are essential elements of the environment. If the environment is the

individual’s own home, family members, telephones and the television can all be sources

of distraction and create barriers to effective communication.

Within hospital settings, very often the only thing that separates people is curtains, and this means that others may be able to listen to conversations.

Other barriers may include:

Inadequate or inappropriate lighting

Background noise, radio/television, telephones, etc.

The room is too hot or too cold

Insufficient privacy

Uncomfortable seating

Unpleasant and unwelcoming décor and furnishings

Poor positioning for communication to take place, e.g. sitting behind a desk – creating a barrier between the health care professional and the individual.

2.2 Strategies to overcome barriers

In order for barriers to effective communication to be reduced, various ways need to be developed within the work team. These are only likely to be effective after a full assessment of these barriers has been completed. Information should be communicated effectively, verbally, and written accurately, completely and legibly.

The individual’s general condition and stage of end of life care

Every effort should be made to ensure that individuals who are dying have adequate symptom control, that their holistic needs are fully met and strategies are in place to ensure tiredness and illness and the stage of end of life care do not prevent the individual (or their representative) communicating their needs and wishes.

Support of families, friends and carers should be maintained throughout and they should be encouraged to represent and communicate the individual’s and their wishes. Reference should always be made to the advance care plan and any advance directive and this should be discussed, reviewed and updated where necessary.

Physical

Assessment of sight, hearing and mobility needs:

Providing aids and equipment

Hearing aids have a functioning battery. Understand their use and maintenance.

Spectacles are clean and worn when required

Adjusting the level and pace of communication to suit the client’s needs

Being patient with those who have problems expressing speech

Providing a clear description for a visually impaired client

Facing a client who is hard of hearing

Assisting clients with mobility problems to access areas where communication can take place

Treatment to alleviate problems, e.g. new spectacles, eye surgery, removal of excess ear wax.

Report any problems you are unable to deal with to your manager who can arrange for specialist support for your clients, e.g. speech therapists. Education and training can also be arranged for you.

Language and culture

Being aware of language differences - an interpreter may be required

Using body language and alternative ways of saying things when a client misunderstands

Speaking in short, clear sentences

Using your listening skills to check understanding

Making greater use of pictures and non-verbal communication

Being aware of the way different cultures understand, and express themselves

Dealing with strong emotions and knowing what to say The meaning of supportive care

“Supportive care helps the patient and their family to cope with their condition and treatment of it – from pre-diagnosis, through the process of diagnosis and treatment, cure, continuing illness or death and into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment.” National Council for Palliative Care NCPC 2005).

Being open and able

There are no rules about when to talk about dying – there is no checklist or plan to follow. It is a very individual and highly personal thing. Some people start to talk about it when it becomes clear that their illness cannot be cured, even though it may be several months before they die. Others prefer to wait.

Some people may be clear about their preferences with regard to care when they are dying and what should happen after their death. They may be ready to have discussions with those closest to them and with care staff. In other cases people may be more reluctant to broach the subject, or have it broached with them.

However it is done, the process of talking to individuals about their death is a delicate one which should be done sensitively and with compassion. You, as a care worker, must be guided and advised by your manager to prepare you for dealing with this issue.

Some people may express thoughts about dying, in particular their hope for a peaceful, pain free death, or their fear of death and their concerns for those left behind.

Staff should adopt an approach which is honest and open about the facts of illness and death, should the individual ask them. Those in the position of providing care and support should do everything they can to calm an individual’s fears and attend to their concerns.

The more comfortable and confident you are encouraged to feel about discussing death and dying the more likely you are to understand and, in turn, fulfil people’s individual needs and wishes.

The difficulties associated with discussing death and dying

Dying people, the professionals who care for them and loved ones may find it very difficult to discuss death and dying.

Personal (peer) support in palliative care

The role that you undertake in supporting individuals to prepare for death will involve working with other members of the team to ensure that all care given is consistent and coordinated. There may be areas of care that you feel comfortable with and there may be areas where you feel less able to cope. The needs of the individual are wide and varied, as you will see throughout this unit. It is of paramount importance that you acknowledge and recognise your own limitations in providing care for individuals who are dying and are able to refer them to other members of the team in order to meet their care needs. The most important consideration is that you put the individual at the centre of everything you do.

Health care staff reactions

It is important to take into account that as you work through this programme you may trigger feelings within yourself that may make you feel upset or distressed, as you begin to reflect upon your own personal experiences.

If at any stage you feel that you need to discuss your feelings with someone or you need to take time out from this programme, it may be helpful to mention this to your tutor or manager so that appropriate arrangements can be made.

Personal

Accepting personality differences

Supporting, respecting and understanding the client

Providing feedback and encouragement

Showing acceptance of the person

Providing encouragement to communicate

Adapting communication to accommodate changing needs and preferences

Care worker

Practicing self-appraisal to identify knowledge and understanding

Asking for help to address areas of which you are unsure. This may be especially relevant when you first become a care worker, as you may have had little experience of ill or disabled people and limited contact with care professionals. The importance of gaining support, advice and guidance from your colleagues and manager cannot be overstated. This will prepare you to communicate effectively and will eventually enable you to support others.

Obtaining education to develop knowledge

Environmental changes

An environment which has been thoughtfully designed can assist clients to communicate effectively and make their needs and wishes known:

Check and adjust lighting and reduce background noise

Ensure the level of heat is appropriate and comfortable

Provide privacy and areas for socialising

Ensure the seating is comfortable and positioning enhances communication

Assistance to access

Provide pleasant and welcoming décor and furnishings

Keep interruptions to a minimum

Care worker interventions

Be sure of the nature and scope of the communication barrier and the client’s plan of care

Don’t wait for the client to approach you. Don’t make the client feel communication only takes place when absolutely necessary – initiate conversation.

Adopt a relaxed posture, showing you have time to listen and converse

Face the client, avoid covering your mouth or turning away – this is particularly important if the client lip reads.

Ensure speech is clear and at a manner, level and pace to suit the client’s needs

Do not dominate the conversation or suddenly change the subject

Use non-verbal communication to enhance verbal communication

Observe the client’s body language to assess understanding

If the client mis-hears and responds inappropriately, do not be afraid to repeat yourself or ask the client to clarify or confirm that they understand

Allow the client time and space to respond

Write things down and use symbols

Report any changes immediately If

others are present:

Make sure they are aware that the client has a communication barrier – be tactful and maintain confidentiality

Do not answer for the individual

Be patient – imagine how you would feel in the person’s position

Lack of understanding

This can be extremely distressing for the client, especially if they have the insight to realise something is wrong. This is called ‘receptive dysphasia/aphasia’. The brain cannot ‘unscramble’ the spoken words and the client can understand little or nothing of what is being said.

When the brain has been damaged due to injury caused by stroke or trauma, rehabilitation will play a major part in the client’s treatment. You should be guided by therapists who will advise on speech therapy and the use of gestures, signs, symbols and the written word. Remember, be patient with the client as they may become very frustrated as they may feel everyone is speaking a language they do not understand.

In dementia, this type of problem usually occurs late in the dementing process, making it virtually impossible to communicate with clients.

This is where the use of non-verbal communication such as the tone of voice, facial expressions and the use of touch, becomes particularly important.