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Bereavement and Loss


They also miss out on other losses such as staff leaving rituals and often staff ... Communication when supporting someone who is grieving ... – PowerPoint PPT presentation

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Title: Bereavement and Loss

Palliative Care Responding to loss and grief
when supporting adults with Learning Disabilities
  • Fire exits, drills
  • Toilet facilities
  • Breaks
  • Health and Safety

Bereavement and Loss
Exercise 1
  • What is Loss and Bereavement?

Bereavement and Loss
  • Grief is the price we pay for love (Parkes
  • Just as people with learning disabilities form
    close bonds and loving relationships, so do they
    experience grief at times of loss. However it is
    still common for people to be marginalised in
  • Why?

  • Professor Sheila Hollins of St Georges medical
    school research suggests that up to 50 of people
    with a learning disability do not attend the
    funeral of their parents. They also miss out on
    other losses such as staff leaving rituals and
    often staff and family do not explain the process
    around bereavement and major loss.
  • Why.. Because staff/family feel they need to
    protect the person from their feelings. Or they
    feel that they will not understand.

  • Maureen Oswin and Hollins et al 1991 research
    confirmed the view that people with a learning
    disability respond to bereavement and loss in
    essentially the same way as anyone else.
  • Hollins and Esterhuyzen 1997 has shown that for
    people with learning disabilities the effect of
    bereavement can be prolonged with people
    experiencing more anxiety, depression,
    irritability and other signs of distress.

Learning objectives for today
  • Outline the 9 points of the world health
    organisations definition of palliative care.
  • Define the meaning of the term palliative care
  • Supportive and Terminal Care
  • What happens when someone grieves?

  • 5 Circle of Grief
  • Communication when supporting someone who is
  • Practical tools to help the person who is
  • Planning exercises
  • Supporting others to plan for their end of life

  • Caring for a person who is dying
  • Working with other professionals at this time
  • Good death / Bad death
  • Coping strategies and stress management
  • 10 Finish on the positive!!

Life line
  • Produce a life map for yourself highlighting the
    important things, milestones, relationships,
    experiences etc. that have had an impact upon
    yourself and helped to shape the person that you
  • E.g. first holiday abroad, passing a
    qualification, meeting a partner, having
    children, moving house etc.
  • Share with group

Define Palliative Care?
  • The care given to a person with an advanced,
    life limiting illness, for which there is no
    cure. Palliative care seeks to support the
    individual not only with their physical needs,
    pain and other distressing symptoms, but also
    their emotional, social and spiritual needs. It
    also includes support to relatives and friends,
    both during the persons illness and after their
    death in the form of bereavement care.

World Health Organisations 9 point definition
  • Provide relief from pain and other distressing
  • Affirm life and regard dying as a normal process.
  • Neither hasten or postpone death
  • Integrate psychological and spiritual aspects of
  • Offer a support system to help patients live as
    actively as possible until death.

6.Offer a support system to help the family cope
during the patients illness and in
bereavement. 7.Use a team approach to address
the needs of patients and their families,
including bereavement counselling if
indicated. 8.Enhance quality of life, and may
positively influence the course of illness.
9.Be applicable early in the course of illness,
in conjunction with other therapies that are
intended to prolong life, such as chemotherapy or
radiotherapy, and include those investigations
needed to better understand and manage
distressing clinical complications.
  • Which from these nine points do you feel you and
    the service you work for could provide?
  • Discuss

Supportive care and Terminal Care
  • What do these terms mean?
  • Supportive care- care that is offered once a
    diagnosis has been made, this may be in the years
    or months before death.
  • Terminal care care that is offered in the last
    hours, days or weeks of life.

What happens when someone grieves?
  • Exercise 2
  • What sort of emotions might be associated with
  • What physical sensations may be associated with
  • What behavioural responses might somebody show in
    reaction to loss.

Definition of Grief
Grief, which is also known as bereavement, is a
term used to describe the intense and painful
emotions experienced when someone or something a
person cares about either dies or is lost. The
emotional pain from losing a loved one, whether
it is a spouse, child, parent, sibling, friend,
or pet, can be the most severe suffering a person
must endure. At its most intense, grief can
dominate every facet of a person's life, making
the carrying out of ordinary responsibilities

Circle of Grief
Life Cycle
Go round too fast and you get stuck in a circle
Drage Bell 1994
Learning to accept that we do not get over a
loss, but learn to live with the loss experience,
can assist individuals in accepting their grief
responses as a journey as part of their own
life experiences and not merely see this as a
task to be accomplished to get better.
How can care staff support anticipatory grief?
  • Denial and isolation
  • Anger
  • Bargaining
  • Depression
  • Acceptance
  • Elisabeth Kubler Ross stresses that these
    stages can occur in any order, at any time or

Denial and isolation
  • Give the person time, listen and allow them to
    maintain a sense of control.
  • Remain non judgemental, allow the person to
    express their beliefs and emotions
  • Do not contradict the person
  • Be alert for mood swings
  • Do not take anger personally
  • Be understanding and patient

  • Encourage the person to talk about their
    feelings, support realistic hopes.
  • Report all findings of depression
  • Respect peoples choices
  • Provide opportunities to listen

  • Help relatives and significant others to come to
    terms with the grieving process, they may feel

John Welshons states so there is no way to
apply systems, rules or emotional road maps. Our
job is to be a presence, rather than a saviour.
A companion rather than a leader. A friend
rather than a teacher. Awakening From Grief
Healing The Grief
Complicated Grief
Without acknowledgement and support for the
grieving person, they may encounter problems and
be unable to grow or move forward which may lead
to complicated grief, can lead to physical
conditions, even death if unsupported, e g heart
attacks and stroke
  • How to communicate with people who are dying or
    those that are grieving

Active Listening
  • Exercise 3
  • Active listening in pairs.
  • Each person spends 5 minutes telling the listener
    in detail what they did last night from returning
    home to going to bed. The listener must repeat
    back in detail what they have heard.

Active Listening
  • Time to listen
  • Reflecting questions back
  • Minimal prompts
  • Repeating last 2 or 3 words of the sentence,
    paraphrasing e.g so your saying that you are
  • Watch for body language
  • Find / seek meaning behind the words, emotions
    fears etc.
  • Validate the feelings expressed.

Non verbal communication
  • Positioning
  • Eye contact
  • Eye level
  • Touch
  • Proximity
  • Posture
  • Gestures
  • Visual Aids

  • Use a natural vocal style
  • It is ok to have pauses, moments of silence to
  • Stay on the topic do not jump to a different
    topic or interrupt, give advice or ask why
  • Do not take notes or clock watch.
  • Be aware of blocking. Using phrases that avoid
    discussing the topic, e.g. dont say that you
    have plenty of life in you yet.

  • Be aware of and honest about your own feelings.
  • Avoid offering misleading reassurances.
  • Be prepared to repeat yourself as a person
    absorbs information.
  • Avoid the expectation that you should know all
    the answers
  • Respect confidentiality
  • Avoid collusion

How do we support someone who is grieving?
  • Be honest, include and involve. (persons and
    significant others)
  • Listen and be there must occur immediately
    after the death also in the weeks, months
    following the death, support the person to
    understand the permanence of death.
  • Actively seek out non verbal rituals explain
    any cultural rituals, explain to the person what
    happens when someone dies.

Support cont..
  • Respect photos and other mementoes. People may
    wish to avoid objects, photos or places that
    remind them of the deceased but as time passes
    these may become treasured. Help people to choose
    mementoes and keep them safe to look at a later
    date. Life books, memory books/boxes
  • Minimise change minimise change in routine and
    changes to accommodation at a time of grief.
    Suggest wait at least 1 year before any major

Support cont.
  • Do not make assessments at a time of grief as
    peoples skills, behaviours may have regressed
    because emotional energy being expended on
  • Assist searching behaviour revisit old haunts,
    go to the cemetery, visit the grave. People may
    wander trying to find their way home or lost
    family. People may demonstrate hoarding
    behaviours for which you may need to seek
    professional help, e.g. counsellor.

  • Support the observance of anniversaries.
  • Seek specialist for consultation if behavioural
    changes persist.
  • Professional carers and family members may be
    grieving too and need a regular shared
    opportunity to talk about difficulties in a
    confidential and supportive environment.
  • Spiritual Needs are acknowledged and supported

Communicating about Bereavement
  • Grief responses in people with a learning
    disability are often delayed due to limited
    cognition therefore it is important to record the
    information about the death in an accessible and
    permanent way as the information may need to be
  • Find an appropriate place or venue which is
    private, comfortable, and if possible familiar
    and ensuring sufficient time.

  • 2. Find out how much the person knows or
    understands about the situation. This might
    involve asking questions to explore understanding
    or using leaflets, pictures to empower the person
    to ask questions
  • 3. Find out how much the person wants to
    know, some people might not want details.
  • 4. Share the information at the persons own
    pace, use basic facts, use truthful language that
    cannot be mis-understood. I.e. the person has
    died not left, passed on as the person may go
    looking for them.

  • Respond to persons feelings, recognise and
    evaluate responses, offer constructive feedback,
    work at an appropriate pace.
  • 6. Planning and follow through. Some people
    may have a history of challenging behaviours, and
    staff may fear informing them of a death in fear
    of inappropriate responses. Plan ahead with any
    staffing issues and any on going support that may
    be required.

  • .7. Media Television, radio and video can all
    be effective ways of engaging individuals and
    groups in discussion about their thoughts and
  • Music Music is another way of helping people to
    identify and explore emotions and feelings.
    People may like to be helped to make tapes of
    songs or music that brings back memories of
    their loved one, or create a tape that can be
    used to relax when they are finding things

  • 9. Art work collages can be made from
    mementoes of the person who has died, including
    photos, materials, jewellery etc.
  • 10. Gardening is an activity enjoyed by many,
    creating a special area of the garden to remember
    a loved one or planting a special plant can help
    if visiting a grave is not possible.

  • 11. Games Using games such as jigsaws and
    board games can act as a diversion when talking
    about difficult issues.
  • Case study example.

My Funeral
(No Transcript)
  • Planning my funeral

What would they say about me?
  • We will look at how we can support person to plan
    for their death
  • and
  • Support a person who is dying

Planning with a person
  • This should be done in a person centred way in
    order to have the most benefit to the person.
  • What can you help the person to plan for in

  • Funeral
  • Burial
  • Making a will / making decisions
  • Health Plan
  • My last days
  • Identifying spiritual needs

  • Discuss with person and significant others (with
    the persons permission) what kind of funeral
    they would like.
  • Where would they like it to be?
  • Where would they like to be buried?
  • Who would they like to be there?
  • What music / poems, readings?

Making a Will.
  • There is no reason why a person with a learning
    disability should not do this.
  • They need to understand
  • What is involved
  • What are the effects
  • The extent of the property being disposed
  • They understand the claims of people who might
    expect to benefit from the will
  • There are also
  • Living wills which contain information about
    wishes around health treatment
  • Wish lists for people who might have an idea of
    what they want but do not have the capacity to
    make a will.

Making Decisions
  • Because people with learning disabilities do not
    have the experience of taking small steps and
    decisions in relation to their own healthcare,
    they often arrive at a serious stage in their
    lives without having had the opportunity to
    become a competent decision-maker.

Identifying Spiritual Needs
  • We must be responsive to a persons religious and
    spiritual needs.
  • We can give the person the opportunity to
    identify needs which can be met by their beliefs.

  • Questions you might ask are
  • What is important to you?
  • What helps you to be happy if you are upset?
  • What do you think happens to people who die?
  • Have you ever been to church? Did it make you
    feel happier?

Caring for a person who is dying
  • From our observations when we support a person,
    we notice changes to a persons health or
    behaviour. From this, a visit to the Doctor and
    maybe to the Specialist would lead to a diagnosis.

Life Span
  • The most common age for people with profound and
    complex impairments associated with learning
    disabilities to die is 20 30 years.
  • Older people with learning disabilities die form
    usual common illnesses in old age e.g. Cancer,
    Coronary Disease.

  • Illness in people with learning disabilities is
    often diagnosed at a later stage than in patients
    without a learning disability.
  • The consequences of this is that some treatment
    options might then be ruled out due to the late
    stages of the condition.

  • Valuing People (England) states that all people
    with learning disabilities should have a Health
    Action Plan by June 2005
  • This should run along side the Person Centred
    Plan and be facilitated by a named person and
    drawn up by a multi disciplinary team.
  • We have no policy on this at the moment.

  • We have learned that we must try to identify what
    is normal for the person and not just see the
    learning disability that might then become an
    excuse for the change and that will mask the
    illness. The learning disability should not
    dominate the picture.

What Might stop us identifying changes in health
of persons?
  • High Staff Turnover
  • Staff reluctant to access Other Professionals due
    to their own personal experience
  • Lack of training
  • Attributing the changes to the learning
    disability and not looking further.

Diagnosis and Timing
  • It is apparent that an illness in people with
    learning disabilities may be discovered or
    diagnosed at a later stage than in patients who
    do not have a learning disability.
  • This results in some treatments being ruled out
    as it is too late for some intervention.

Your Role when Caring for a person who is dying
  • You can-
  • Talk to people with learning disabilities about
    their death.
  • Think of some of the questions they might ask and
    some answers.
  • Offer comfort and practical assistance
  • Help family members find a role for themselves.
  • Work with palliative care specialists and other

Openness and Honesty
  • Glaser and Strauss (1964) drew up a framework for
    analysing communication in relation to people who
    are dying. They used the term Awareness
    Contexts to describe four patterns of

  • An open-awareness context where both the
    patient and their family/carers know that they
    are dying and each know that the other knows.
  • A Closed Context one in which, although a
    doctor might know, the person themselves, the
    relatives/carers do not know or know if the other
    person knows.
  • A pretence Context one in which all the parties
    know that the patient is dying but pretends not
    to know.
  • A Suspicion Context This is a variation on a
    closed context, in which the patient suspects
    that they might be dying, but no-one will confirm
    or deny it.

How do I cope?
Support Path
  • Exercise 4
  • Hand out blank support path sheets. Please
    complete individually.
  • Feedback

A Good Death
Q What do we think this means? Q What do we
think a Bad Death experience may involve?
A bad Death
  • Individual experiences persistent or uncontrolled
  • The individual is lonely and fearful.
  • Spiritual and religious wishes are ignored.
  • Lack of compassion and sensitivity of staff
  • Affairs are not in order and individual is
    worried about loved ones.

  • Staff are unwilling to listen to the needs of the
    individual or their family.
  • Information is withheld from those who have a
    right to know.
  • Decisions being made without consultation.
  • Poor communication between health care

Exercise Your wishes
  • How was that exercise, did you feel comfortable
    completing and discussing this?
  • If not, why not?

(No Transcript)
  • Estimated that 32,000 people die in care homes
    each year (Katz et al 2004)
  • Residential and nursing homes are regulated
    against National Minimum standards under the Care
    Standards Act (2000) Standard 11 focuses
    specifically on death and dying. All care staff
    must be aware of this standard.

  • Some healthcare workers may find it difficult to
    discuss death and dying.
  • Why?
  • Sympathetic pain
  • Care worker status
  • Fear of blame
  • Fear of reactions

  • Identify the types of losses a dying person might

  • List the fears people commonly experience towards
    the end of life.

What can we do to support people to manage
their fears?
A Multi Agency Approach
Health action plans
Liverpool Care Pathways
Managing Stress some tools to help!
Stress management ideas
  • Take responsibility for stress
  • Do not identify our whole selves with the
  • Practice self care give to yourself as well as
  • Exercise
  • Drink more water
  • Develop strong support systems
  • Keep a reflective journal
  • Maintain a positive attitude

  • persons can feel loss and grief when changes
    occur, not just when someone dies take care to
    change support approaches to meet these changing
  • Ensure you make the best use of support agencies
    for yourself and the person.

Stress management ideas cont.
  • Acknowledge losses
  • Encourage shared leadership
  • Recognise good work
  • Build caring relationships
  • Empower each other
  • Reflect and evaluate progress
  • Manage time effectively

Can you Remember.
  • What a difference you have made to the quality of
    life of those you have supported.

Consider the Positives
How can we celebrate the life of someone who
has died?
The End