End of Life Nicky Lyall

Outcomes

• Understand the different perspectives on death and dying and End of Life care.

• Understand the aims, principles and policies of End of Life care.

• Understand the factors regarding communication in End of Life care.

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Outcomes

• Understand a person’s response to their anticipated

death.

• Understand how to identify the symptoms in End of

Life care.

• Understand Advance Care planning.

• Understand the actions to be taken following a

person’s death.

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Activity 1

1. Make a list of terms to describe death that you have

used or heard.

2. What do you think is the purpose of these terms?

3. Decide whether or not you feel they are useful and

describe your reasons.

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End of Life care drivers

• The importance of high quality End of Life care for

all has become more of a priority.

• Models of EoLC have been developed mainly from

experience with people dying of cancer.

• Concern that there is a ‘one-size fits all’ cancer-based

approach that is not appropriate for other life-limiting

illnesses. Br J Gen Pract, 2011;DOI:10.3399/6jgp11x549018

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Uncertain prognosis

The uncertain prognosis of some illnesses with the risks

of sudden death, calls for the development of a unique

approach to discussions concerning the End of Life.

• Heart failure

• Mental health

• Respiratory disease

• Diabetes (Barclay, Momen, Case-Upton et al; 2011)

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Activity 2

1) Consider what you believe happens after death and

how these beliefs influence your personal attitude to

death and dying.

2) What do you understand by the term ‘a good death’?

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Activity 3

1. Make a list of factors that you feel are important for

a good death.

2. What would be your main priorities?

3. How do you think these priorities relate to your

identity (gender, class, age, ethnicity) and the

cultural context in which you live? open university 2009

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End of Life care

• All elements of support to people approaching the end of their life. As well as the highly skilled and focused care and support that may be provided by those working as palliative care specialists, all of the other significant support that is given needs to take on a different focus and perspective to accommodate this stage of life. It encompasses the management of all symptoms including pain, and provides psychological, social, spiritual and practical support. (NHS,EoLC,2010)

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Palliative Care

Palliative Care, as defined by the Department of Health (2000b), is the holistic, individualised care of someone who has been diagnosed with an incurable or life-limiting illness.

‘Palliative care improves the quality of life for patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to end of life and bereavement’. (World Health Organization,2008)

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Policies

The NHS End of Life care programme supports the use

of certain approaches, these provide all health and social

care staff with ways to improve End of Life care:

• Gold Standards Framework (GSF)

• Preferred priorities for Care (PPC)

• Five Priorities for Care replaced (LCP)

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End of Life care strategy

• NHS EoLC strategy describes a care pathway.

• The strategy calls for a culture change towards more

open discussion with people.

• Not everyone will want such discussions.

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Six stages of the

End of Life care pathway 1. Discussions as end of life approaches.

2. Assessment, care planning and review.

3. Co-ordination of care.

4. Delivery of high-quality care in the settings in

which people live.

5. Care in last days of life.

6. Care after death. 2.31 End of life policy. St Annes Community Services based on NHS

guide to achieving quality end of life outcomes for people with

Learning Disabilities.

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Local Pathway

• ‘Doing it my way’

• Comprehensive guide developed to lead you through

every stage in caring process.

• Developed by End of Life care focus group at St

Anne’s Community Services.

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Where

• Home

• Hospital

• Hospice

• Nursing Home

• Residential home

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Other considerations

• Mental Capacity Act

• DNACPR

(Do Not Attempt Cardio-Pulmonary Resuscitation.

this is not the same as Do Not Treat).

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Culture and Care

• It is important to recognise that social exclusion or

trauma of past events can affect the experience of

dying and care for people from minority ethnic

groups.

• The service should be culturally sensitive,

• Communication should be culture specific.

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Patterns of communication

• Open awareness in which both the dying person and worker openly acknowledge.

• Suspected awareness in which the person suspects what is wrong but does not mention it.

• Mutual pretence awareness in which both know that the other knows but neither says so.

• Closed awareness the dying person does not know what is wrong and the other person is certain of this.

Glaser and Strauss ‘temporal predictions of dying trajectories’ 1968

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Buckman’s three stage

model of the dying process (Open University Press, 2000)

Initial stage

(facing the threat)

Chronic stage

(being ill)

Final stage (acceptance)

A mixture of reactions that are

characteristic of the person and

which may include any or all

of the following:

fear, anxiety, shock, disbelief,

anger, denial, guilt, humour,

hope, despair, bargaining.

1. Resolution of those

elements of the initial

responses that are

resolvable.

2. Reduction of the

intensity of all

emotions.

3. Depression is very

common.

1. Defined by the dying

person’s acceptance of

death.

2. Not an essential state,

provided that the dying

person is not distressed,

is communicating

normally, and is making

decisions normally.

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Model of grief

• Denial

• Anger

• Bargaining

• Depression

• Acceptance

(Elizabeth Kubler-Ross, 1969)

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Social norms of grief

• Time limited

• Distracted grief

• Forbidden grief (Tony Walter, 1999)

• Expressive grief

• Transformative grief } (Joan Berzoff, 2006)

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Colin Murray Parks Model of Grief

• Shock and denial: Relatively short lived, lasting from a few days to a few weeks but with no time limit.

• Pining: Period of intense grief when the reality of the loss is faced, bringing with it feelings of pining for the dead person. The person’s life is dominated by grief and lasts about one year.

• Recovery: The bereaved person gives up any hope of recovering the loved one and starts to adjust to a world without them.

Open University Course K260. 2001

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A dual process model

of coping with grief. Loss oriented

• Grief work

• Intrusion of grief

• Breaking bonds/ties

• Denial/avoidance of

restoration changes.

Margaret Stroebe and Henk Schut

Restoration oriented

• Attending to life

chances.

• Doing new things.

• Distraction from grief.

• Denial/avoidance of

grief.

• New roles/

identities/relationships

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Activity 4

• Do the models of grief fit your experience of

bereavement within your client group? Please explain

your answer.

• How useful are these models?

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Activity 5

1. What are the advantages of being able to predict when a dying person will die?

2. What factors make death difficult to predict?

3. What physical and emotional changes would you expect to see in a person during the last few weeks of life?

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Emotional and

mind changes • Worry

• Anxiety

• Panic

• Anger

• Resentment

• Sadness

• Depression

• Withdrawn

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Physical changes

• Tiredness and lack of energy

• Sleep disturbances

• Weight loss and loss of appetite

• Feeling sick and vomiting

• Constipation

• Fluid build-up (oedema)

• Infection

• Breathlessness

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Physical changes

• Coughing and wheezing

• Anaemia (low red blood cell levels)

• Bladder problems

• Swollen stomach (ascites)

• High calcium levels (hypercalcaemia)

• Pain and side effects of painkillers

• Tissue viability

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Pain scale 10 Worst pain possible

9

8 Very severe pain

7

6 Severe pain

5

4 Moderate pain

3

2 Mild pain

1

0 No pain

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Last days and hours

• Most people with advanced illness will gently ‘wind

down’.

• Body systems slow down over months, then day by

day, then hour by hour.

• The circulation slows so that fingers, toes and nails

are cool and blue-ish.

• Breathing may become slower or irregular.

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Activity 6

1) Reflect on a person you have supported at the end of their life, or how you might support someone in the future.

2) What are the key points to supporting in a person-centred way?

3) How would you prepare the person for death?

4) How would you support the person with physical comfort?

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Care after death

• NHS National End of Life Guidance for staff

responsible for care after death.

• Sacrament of the sick for Christians

• Ethnic and other religious practices

• Last rites and last offices not used due to military and

religious links (follow workplace policy)

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Activity 7

Apart from the relatives, who else may need support

after the death of a person?

1. Describe how you would give emotional support.

2. Describe how you would give informational

support.

3. Describe how you would give practical support.

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Staff support

• Importance of personal development review or

supervision

• Good support networks

• Work/life balance

• Team meetings

• Mentoring

• Leadership and management skills

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Activity 8

• Revisit the definition of End of Life care.

• Can you write a working definition of this that people

may find more user friendly?

TALK PLAN LIVE

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Activity 9

• Think about how you can ensure people

live well until they die.

• Most people you support will have had life

limiting conditions from birth or early

years. What do you think are the most

important things to consider in relation to

support plans?

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• In the morning you would have been given

some information about EoLC.

• Also you would have watched the DVD

which is about holistic care (living well until

you die).

Next steps

Existing DH documents to promote End-of-

Life Care (EOLC):

• DH (2008) End of Life Care Strategy

• DH (2009) Quality makers and measures

for End of Life Care

• Heslop et al.’s (2012) Confidential Inquiry

into the premature deaths of people with

learning disabilities

Why we need ‘Doing it my way’

Package

The main differences between ‘Doing it my way’

and GSF or other EOLC Package

Gold Standard Framework ‘Doing it my way’

Structure based on those

who verbally communicate

Focus on People with

learning disabilities

Language/terminology

places and emphasis on

people nearing the end of

life

Emphasis is on holistic care

(people living well at

optimum health until they

die)

Coding Probability of Life

Expectancy (POLE)

Coding (can be misleading) and

lead to unintentional categorization

GSF Coding Coding defined time

scale before death

POLE focuses on

anticipated needs of

individuals

A YEARS Optimum health

B MONTHS Congenital abnormality

that will affect life

expectancy

C WEEKS Life threatening

Conditions that respond

to treatment

D DAYS Progression of disease

which no longer

respond to treatment

Caring at End of life:

Care is based on

individuals personal

needs

Why we need ‘Doing it my way’

Package

Knowing how and when to use

the Package • When you accept referral for a new resident: get the staff team

involved to discuss the needs of this person and the care you

provide.

• Consult the ‘Doing it my way’ A Comprehensive Guide to EoLC’:

It provides recommendations to help you facilitate the choices the

people you care for make.

• Consult ‘Doing it my way’ Guidelines for implementing relevant

documentation’: It provides recommendations to help you with

what tools and/or documents to use at this stage of a person’s care:

• The emphasis here is to reassure the people you care for and their

family that you intend to support them with optimum care throughout

their lives until death.

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Knowing how and when to use

the Package • It will identify what documents/tools you need to use at this stage.

E.g. Moving-in document, Weight, bowel charts, daily records etc.

• Find out their medical history, assess their Mental Capacity; Get risk

assessments ready for when they move in.

• Consult the POLE Leaflet: It is a good way to involve family.

Introducing it to family prepares them for when their relatives

condition deteriorates and eventually EoLC. • Also consult ‘Doing it my way’ POLE document, which will help

you determine the stage of life the person is at and what support

they need from you or which other professionals you may have to

involve in their care.

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• Consult ‘My Advance Care Plan’: an easy read which outlines all of

an individuals wishes now that they are in optimum health and what

they wish for when they die. It helps you to plan ahead taking into

consideration future treatments, DNACPR, religion and culture. It is

a good way to get family on board.

Knowing how and when to use the

Package

Activity 10

• Using your pack to help you please look at

the case study of Mary and work through

the questions. Please note Mary has

optimum health.

• Feedback to the group.

Communication

• When supporting clients and their families

having good communication skills is vital.

• Different situations with different individuals will

test your skills and the ability to implement the

different communication techniques.

• Your body language and facial expressions will

have a big influence over how they respond to

you, remember communication is about 70%

non verbal

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Activity 11

• Using your pack to help you please look at

the case study of James and work through

the questions. James has a Congenital

Abnormality that will affect life expectancy

• Feedback to the group.

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Preparation for giving

information • Very important to get the family involved from

admission/diagnosis, we all need to be on the ‘same

journey’ when supporting the client and their family

• Remember how to prepare the environment ensure you

are not disturbed/ quiet environment/ privacy/ give time

don’t rush/ leave the room allow them time to absorb

what information you have given them.

• You need to be prepared and have a good knowledge of

the facts, if you don’t know say so. Find out -web,

network with MDT and get back to the individual, help

builds a trusting relationship

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Other considerations

• The worker needs to have knowledge about the clients

presenting health issues example: dementia/

Parkinson's, when supporting the client and their family

• Be aware of the client and families cultural background,

don’t presume, if not sure ask, the client may be a non

practicing catholic yet there may be elements of the

client and their families spirituality/religious believes that

are important and need to be included in the clients care

plans

• Confidence comes with experience. Having the

knowledge and training about EOL care and

understanding your role in this process empowers you.

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Activity 12

• Using your pack to help you please look at

the case study of Michael and work

through the questions. Michael has a life

limiting condition that responds to

treatment:

• Feedback to the group.

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Family involvement

Family dynamics- All families are individual, each member will react

differently to the situation. Understanding these dynamics helps you to

support the family come to terms with the situation and the future(can

be negative, emotional, in denial, positive and forward thinking, not

afraid to ask questions)

How to involve family- invite to appointments to receive first hand

information, opportunity to ask questions themselves, involve in all

decisions being made. Help them to understand why we need the

Advance Care Plan

Be approachable- discussions about end of life issues with clients and

their families isn’t easy, but these conversations are important. Some of

the best informal discussion happen in corridors or when having a cup

of tea or sat around bed. If you don’t know the answer say you don’t

and agree to get back to them.

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Activity 13

• Using your pack to help you please look at

the case study of Natalie and work through

the questions. Natalie has life limiting

conditions that no longer respond to

treatment:

• Feedback to group.

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Difficult conversations

• Breaking bad news- every one will react differently,

being prepared with the correct facts is vital. Having

knowledge and some training will enable you to feel

more confident. Individuals can experience fear, panic,

numbness and anger when told bad news to help deal

with these responses saying “I hear what you are

saying.” Do not overload the family. Give information

allow time to digest and then give some more info.

• Sign posting- Marie Curie, McMillan nurses, Hospice

family team, web, arrange a meeting inviting a MDT

member that has the specialist knowledge

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Other considerations

• Knowing the individual skills of each team member, their

strengths/weaknesses will help the worker utilise these

when promoting end of life care- you work as a team,

• When accessing services for a client you need to be

their advocate, ask MDT questions, you will need a clear

diagnosis/ prognosis to plan supportive care plans and

facts to hand over to families

• Flexibility around routines just because someone did one

thing once , does not mean they still do. Adapt to the

changing client’s needs physically, emotionally

etc…There is no right or wrong way.

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Finally

• What three things, from today’s session

will you take back to your place of work?

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References • Morris, C,& Collier, F, (2012) End of Life Care A care workers handbook.

Hodder London

• K 260 (2009) Block 1 The social context of dying; Death and Dying. The

Open University; Milton Keynes

• K 260 (2009) Block 2 End of Life Care in Context; Death and Dying. The

Open University; Milton Keynes.

• K 260 (2009) Block 2 The Contexts of grief and bereavement; Death and

Dying. The Open University; Milton Keynes

• Macmillan Cancer Support,(2011) Foundations in Palliative Care , The

Open University; Milton Keynes

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