Quality at the End of Life

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Quality at the End of Life

• By Dr. Sheila Peace
• School of Health Social Welfare
• The Open University

2
Quality ofLiving and Dying

• with Jeanne Katz, Moyra Sidell and Carol Komaromy

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Principles of palliative care

• Control pain and provide symptom relief
• Create support system for all concerned
• Establish a team of carers with good
  communication between them
• Provide expert advice
• Provide emotional, spiritual and practical care
  for dying persons family during illness and also
  bereavement care

4
Policy documents noting needs of older people in
re death dying - A

• Home Life (Centre for Policy on Ageing 1984)

• First guidelines pointing out the needs of dying
  and bereaved residents
• .

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Older people dying in residential settings
studies of quality of care

• Counsel and Care (1995)
• Shemmings (1996)
• Sidell and Katz (1994)

• Small study demonstrating poor quality of care in
  residential homes
• Similar findings to above
• Unpublished pilot study of 4 homes revealing
  discrepancies in a number of areas including
  access to palliative care / district nursing,
  training of staff, and access to equipment.

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Policy documents noting needs of older people in
re death dying B

• Better Home Life (Centre for Policy on Ageing
  1996)

• Guidelines for caring for dying and bereaved -
  little evidence that these percolated through to
  individual homes
• .

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A Better Home Life Recommendations

• Announcing a death
• News of a resident's death should be announced in
  a dignified and gentle way. It may be best to
  announce it quietly to individuals or staff
  groups to begin with but some more public
  announcement may also so appropriate course.
  Some people may find this public recognition
  comforting. It should never be assumed that
  people with dementia do not understand when
  someone has died. Some of the following
  possibilities might be appropriate
• a minute's silence at an appropriate time
• a photograph or some other personal tribute in a
  suitable place
• opportunity to visit the dead person and pay last
  respects

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A Better Home Life Recommendations ctd

• a memorial or thanksgiving service or some other
  religious or cultural ceremony
• lighting a candle
• playing a favourite piece of music or reading a
  poem
• a plant, picture or piece of furniture in memory
  of the person
• Plaques should be kept discreet so that the home
  is not overrun with Memorials
• From Centre for Policy on Ageing (1996) A Better
  Home Life, p. 120.

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Exploring dying in residential settings for older
people OU studies

• 1995-1997 Death and Dying in Residential and
  Nursing Homes for Older people Examining the
  case for palliative care
• 1997-2000 Investigating the Training Needs of
  Residential and Nursing Home Care Staff
• 2002 Extension Study to develop training
  materials to final form
• All funded by the Department of Health

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Death and Dying in Residential and Nursing homes
OU study 1

• Sidell, M., Katz, J., and Komaromy, C. (1997)
  Death and Dying in Residential and Nursing Homes
  for Older People examining the case for
  palliative care
• (Report to the Department of Health)

• Great variation in care provided for dying people
  in nursing and residential homes in England
• Carers lack understanding of palliative care
• Little knowledge of available services

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Who lives in residential care?

• In 412 homes, 10,035 residents
• 3 times more women than men
• 22 stayed over 5 years
• 35 between 2 and 5 years

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Who dies in these settings?

• 2180 deaths in 412 homes in 1996
• Of these deaths, 53 over 85, 14 under 75.
• Most die during the winter months
• Just under half die at night (44.3)
• 476 residents died after transfer to hospital
  (mostly from residential homes, due to different
  status)

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Key findings causes of death

• Results of stage one - survey of 412 homes
• General deterioration (42)
• Acute episode (stroke or pneumonia) 34
• Terminal illness 15
• Sudden death 10

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Caring for dying residents challenges 1

• Addressing dying residents needs

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Caring for dying residents challenges

• Addressing dying residents needs
• Recognising physical pain

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Caring for dying residents challenges

• Addressing dying residents needs
• Recognising physical pain
• Pain assessment and symptom control

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Caring for dying residents challenges

• Addressing dying residents needs
• Recognising physical pain
• Pain assessment and symptom control
• Symptoms other than pain

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Caring for dying residents challenges 2

• Components of good nursing care

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Caring for dying residents challenges

• Components of good nursing care
• Regular turning

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Caring for dying residents challenges

• Components of good nursing care
• Regular turning
• Providing basic comfort to resident

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Caring for dying residents challenges

• Components of good nursing care
• Regular turning
• Providing basic comfort to resident
• Overcoming obstacles

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Caring for dying residents challenges

• Components of good nursing care
• Regular turning
• Providing basic comfort to resident
• Overcoming obstacles
• Addressing emotional needs

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Caring for dying residents challenges

• Components of good nursing care
• Regular turning
• General comfort to residents
• Overcoming obstacles
• Addressing emotional needs
• Addressing other needs

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Overarching issues in caring for dying residents

• Knowledge of older peoples needs

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Overarching issues in caring for dying residents

• Knowledge of older peoples needs
• Ethos of home

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Overarching issues in caring for dying residents

• Knowledge of older peoples needs
• Ethos of home
• Relationship with general practice

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Overarching issues in caring for dying residents

• Knowledge of older peoples needs
• Ethos of home
• Relationship with general practice
• Role of community nurses

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Overarching issues in caring for dying residents

• Knowledge of older peoples needs
• Ethos of home
• Relationship with general practice
• Role of community nurses
• Availability of practical support and guidance

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Overarching issues in caring for dying residents

• Knowledge of older peoples needs
• Ethos of home
• Relationship with general practice
• Role of community nurses
• Availability of practical support and guidance
• Access to training

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Caring for deceased residents

• Knowledge of procedures

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Caring for deceased residents

• Knowledge of procedures
• Laying out the body

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Caring for deceased residents

• Knowledge of procedures
• Laying out the body
• Dealing with relatives

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Caring for deceased residents

• Knowledge of procedures
• Laying out the body
• Dealing with relatives
• Removing the body

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Caring for deceased residents

• Knowledge of procedures
• Laying out the body
• Dealing with relatives
• Removing the body
• Supporting colleagues legitimating grief

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Caring for deceased residents

• Knowledge of procedures
• Laying out the body
• Dealing with relatives
• Removing the body
• Supporting colleagues legitimating grief
• Attending funeral / memorial service

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Caring for surviving residents

• The status of death in homes

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Caring for surviving residents

• The status of death in homes
• Notifying other residents

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Caring for surviving residents

• The status of death in homes
• Notifying other residents
• Constraints on responding to residents needs

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Caring for surviving residents

• The status of death in homes
• Notifying other residents
• Constraints on responding to residents needs
• Legitimating grief

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Caring for surviving residents

• The status of death in homes
• Notifying other residents
• Constraints on responding to residents needs
• Legitimating grief
• Attending funeral / memorial service

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Investigating Training Needs of Carers Aims of
Study Two

• Ascertain range of skills and perspectives of
  carers from different occupational groups who
  care for dying residents
• Explore how carers can share skills and acquire
  new skills in a conducive learning environment
• Test training materials in a range of nursing and
  residential homes
• Develop appropriate and adaptable training
  programme for carers

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Policy documents noting needs of older people in
re death dying C

• Care Homes for Older People National Minimum
  Standards (Department of Health 2001)

• Developed by Centre for Policy on Ageing
  following both two versions of Home Life.
• .

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Care homes for older people National Minimum
Standards (Department of Health 2001)

• OUTCOMEService users are assured that at the
  time of their death, staff will treat them and
  their family with care, sensitivity and respect.

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Care homes for older people National Minimum
Standards (Department of Health 2001)

• OUTCOMEService users are assured that at the
  time of their death, staff will treat them and
  their family with care, sensitivity and respect.
• 11.1 Care and comfort are given to service users
  who are dying, their death is handled with
  dignity and propriety, and their spiritual needs,
  rites and functions observed.

45
Care homes for older people National Minimum
Standards (Department of Health 2001)

• OUTCOMEService users are assured that at the
  time of their death, staff will treat them and
  their family with care, sensitivity and respect.
• 11.1 Care and comfort are given to service users
  who are dying, their death is handled with
  dignity and propriety, and their spiritual needs,
  rites and functions observed.
• 11.2 Care staff make every effort to ensure that
  the service user receives appropriate attention
  and pain relief

46
Care homes for older people National Minimum
Standards (Department of Health 2001)

• OUTCOMEService users are assured that at the
  time of their death, staff will treat them and
  their family with care, sensitivity and respect.
• 11.1 Care and comfort are given to service users
  who are dying, their death is handled with
  dignity and propriety, and their spiritual needs,
  rites and functions observed.
• 11.2 Care staff make every effort to ensure that
  the service user receives appropriate attention
  and pain relief
• 11.3The service users wishes concerning terminal
  care and arrangements after death are discussed
  and carried out

47
Care homes for older people National Minimum
Standards (Department of Health 2001)

• 11.4 The service user's family and friends are
  involved (if that is what the service user wants)
  in planning for and dealing with increasing
  infirmity, terminal illness and death.

48
Care homes for older people National Minimum
Standards (Department of Health 2001)

• 11.4 The service user's family and friends are
  involved (if that is what the service user wants)
  in planning for and dealing with increasing
  infirmity, terminal illness and death.
• 11.5 the privacy and dignity of the service user
  who is dying are maintained at all times.
• .

49
Care homes for older people National Minimum
Standards (Department of Health 2001)

• 11.4 The service user's family and friends are
  involved (if that is what the service user wants)
  in planning for and dealing with increasing
  infirmity, terminal illness and death.
• 11.5 the privacy and dignity of the service user
  who is dying are maintained at all times.
• 11.6 Service users are able to spend their final
  days in their own rooms, surrounded by their
  personal belongings, unless there are strong
  medical reasons to prevent this.

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Care homes for older people National Minimum
Standards (Department of Health 2001)

• 11.7 The registered person ensures that staff and
  service users who wish to offer comfort to a
  service user who is dying are enabled and
  supported to do so.

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Care homes for older people National Minimum
Standards (Department of Health 2001)

• 11.7 The registered person ensures that staff and
  service users who wish to offer comfort to a
  service user who is dying are enabled and
  supported to do so.
• 11.8 Palliative care, practical assistance and
  advice, and bereavement counselling are provided
  by trained professionals/ specialist agencies if
  the service user wishes.

52
Care homes for older people National Minimum
Standards (Department of Health 2001)

• 11.7 The registered person ensures that staff and
  service users who wish to offer comfort to a
  service user who is dying are enabled and
  supported to do so.
• 11.8 Palliative care, practical assistance and
  advice, and bereavement counselling are provided
  by trained professionals/ specialist agencies if
  the service user wishes.
• 11.9 The changing needs of service users with
  deteriorating conditions or dementia - for
  personal support or technical aids - are reviewed
  and met swiftly to ensure the individual retains
  maximum control.

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Care homes for older people National Minimum
Standards (Department of Health 2001)

• 11.10 Relatives and friends of a service user who
  is dying are able to say with him/her, unless the
  service user makes it clear that he or she does
  not want them to, for as long as they wish.
• DoH (2001) Care Homes for Older People, National
  Minimum Standards, p. 13.

54
Care homes for older people National Minimum
Standards (Department of Health 2001)

• 11.10 Relatives and friends of a service user who
  is dying are able to say with him/her, unless the
  service user makes it clear that he or she does
  not want them to, for as long as they wish.
• 11.11 the body of a service user who has died is
  handled with dignity, and time is allowed for
  family and friends to pay their respects.
• DoH (2001) Care Homes for Older People, National
  Minimum Standards, p. 13.

55
Care homes for older people National Minimum
Standards (Department of Health 2001)

• 11.10 Relatives and friends of a service user who
  is dying are able to say with him/her, unless the
  service user makes it clear that he or she does
  not want them to, for as long as they wish.
• 11.11 the body of a service user who has died is
  handled with dignity, and time is allowed for
  family and friends to pay their respects.
• 11.12 Policies and procedures for handling dying
  and death are in place and observed by staff.
• DoH (2001) Care Homes for Older People, National
  Minimum Standards, p. 13.

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Policy documents noting needs of older people in
re death dying D

• National Service Frame-work for Older People
  (2001)

• Dignity in end of life care
• Supportive and palliative care aims to promote
  both physical and psycho-social well being.
• .

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National Service Framework for Older People DoH
2001

• Supportive and palliative care aims to promote
  both physical and psychological social
  well-being. All those providing health and
  social care, who have contact with older people
  with chronic conditions or who are approaching
  the end of their lives may need to provide
  supportive and palliative care"
• (DoH, 2001, p. 25)

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Key IssuesRelationshipsResources
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Learning from the The Last Refuge

• by
• Professor Peter Townsend
• 1962

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• Key References
• Hockley, J. and Clark, D. (eds.) (2002)
  Palliative Care in Residential Care. Open
  University Press, Buckingham.
• Katz, J.S. and Peace, S. (eds.) (2003) End of
  Life in Care Homes A Palliative Care Approach
  Oxford University Press, Oxford.
• Macmillan Cancer Relief (2004)Foundations of
  Palliative Care A Programme of Facilitated
  Learning for Care Homes Staff, Macmillan Cancer
  Relief, London ( Katz, Komaromy, Sidell)