Bereavement and Loss

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Palliative Care Responding to loss and grief
when supporting adults with Learning Disabilities
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Housekeeping

• Fire exits, drills
• Toilet facilities
• Breaks
• Health and Safety

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Bereavement and Loss
Exercise 1

• What is Loss and Bereavement?

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Bereavement and Loss

• Grief is the price we pay for love (Parkes
  1986)
• 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
  bereavement.
• Why?

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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.

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• 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.

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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?

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

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• 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!!

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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
  are.
• E.g. first holiday abroad, passing a
  qualification, meeting a partner, having
  children, moving house etc.
• Share with group

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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.

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World Health Organisations 9 point definition

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

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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.
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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.
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• Which from these nine points do you feel you and
  the service you work for could provide?
• Discuss

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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.

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What happens when someone grieves?

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

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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
impossible.

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Circle of Grief
Life Cycle
Reorganisation
Shock
Disorganisation
Protest
Go round too fast and you get stuck in a circle
Drage Bell 1994
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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.
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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
  simultaneously

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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

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Bargaining

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

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Acceptance

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

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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
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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
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Communication

• How to communicate with people who are dying or
  those that are grieving

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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.

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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
  worried.
• Watch for body language
• Find / seek meaning behind the words, emotions
  fears etc.
• Validate the feelings expressed.

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Non verbal communication

• Positioning
• Eye contact
• Eye level
• Touch
• Proximity
• Posture
• Gestures
• Visual Aids

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• Use a natural vocal style
• It is ok to have pauses, moments of silence to
  reflect.
• Stay on the topic do not jump to a different
  topic or interrupt, give advice or ask why
  questions.
• 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.

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• 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

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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.

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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
  changes.

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Support cont.

• Do not make assessments at a time of grief as
  peoples skills, behaviours may have regressed
  because emotional energy being expended on
  grieving.
• 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.

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• 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

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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
  repeated.
• Find an appropriate place or venue which is
  private, comfortable, and if possible familiar
  and ensuring sufficient time.

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• 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.

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• 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.

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• .7. Media Television, radio and video can all
  be effective ways of engaging individuals and
  groups in discussion about their thoughts and
  feelings.
• 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
  difficult.

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• 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.

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

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My Funeral
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(No Transcript)
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• Planning my funeral

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

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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
  advance?

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

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Funeral

• 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?

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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.

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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.

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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.
  

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• 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?

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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.

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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.

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• 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.

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• 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.

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• 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.

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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.

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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.

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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
  agencies.

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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
  communication

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• 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.

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How do I cope?
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Support Path

• Exercise 4
• Hand out blank support path sheets. Please
  complete individually.
• Feedback

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A Good Death
Q What do we think this means? Q What do we
think a Bad Death experience may involve?
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A bad Death

• Individual experiences persistent or uncontrolled
  pain.
• 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.

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• 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
  professionals.

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Exercise Your wishes

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

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(No Transcript)
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• 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.

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

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Exercise

• Identify the types of losses a dying person might
  experience.

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Exercise

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

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What can we do to support people to manage
their fears?
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A Multi Agency Approach
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Health action plans
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Liverpool Care Pathways
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Managing Stress some tools to help!
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Stress management ideas

• Take responsibility for stress
• Do not identify our whole selves with the
  experience
• Practice self care give to yourself as well as
  others
• Exercise

• Drink more water
• Develop strong support systems
• Keep a reflective journal
• Maintain a positive attitude

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Remember

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

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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

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Can you Remember.

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

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