End of Life Care in the Residential Home Setting

1
End of Life Care in the Residential Home Setting

• Una Molloy, RGN, RM, MSc Nursing
• Project Nurse St Francis Hospice Raheny

2
End of Life Care

• Best described as a continuum, rather than a
  point in time
• EOLC is being increasingly used as a generic term
  in preference to palliative care when considering
  the needs of people with conditions other than
  cancer, particularly in long term care settings.(
  Seymour et Al, 2005)

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EOLC

• EOLC as a Chronologically indefinite part of
  life when residents and their caregivers are
  struggling with the implications of an advance
  chronic illness(Lorenz et al, 2005)

4
Palliative Care

• An approach that improves the quality of life of
  patients and their families facing the problems
  associated with life-threatening illness, through
  the prevention and relief of suffering by means
  of early identification, assessment and treatment
  of pain and other problems , physical,
  psychosocial and spiritual.(WHO,2002)

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Ireland CSO 2006

• 30,000 people die in Ireland each year, ¾ are
  aged 65 years and over.
• 2/5 of these older deaths occur in the acute
  hospital setting
• A further 20 of older people die at home, while
  15 die in private nursing homes, leaving the
  remaining 25 to die in Public long-stay care
  facilities

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EOLC in Long Stay settings

• Froggatt(2004) 3 stages associated with death in
  long stay settings.
• 1. The living and losses experienced in the care
  home
• 2. The actual dying and death
• 3. The bereavement that follows a persons death.
• EOLC needs to be integrated as a key element of
  all care provided from admission to bereavement.

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Health Information and Quality Authority (2008)

• The National Standards for Residential Care
  Settings for Older people in Ireland.
• Standard 16 Each Resident continues to receive
  care at the end of his/her life which meets
  his/her physical, emotional, social and spiritual
  needs and respects his/ her dignity and autonomy.

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Standard 16

• Residents PC needs are assessed, documented and
  regularly reviewed. The information is explained
  and discussed with the resident or his/her family
  at regular intervals and options discussed.
• The residents wishes and choices regarding EOLC
  are discussed and documented and in as far as
  possible implemented and reviewed regularly with
  the resident

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Standard 16

• Where the resident can no longer make decisions
  on such matters due to absence of capacity,
  his/her representative is consulted.
• In accordance with the residents assessed needs,
  referrals can be made to Sp Palliative care
  services so that an integrated approach to end of
  life care is provided
• Staff are provided with training and guidance in
  EOLC

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Standard 16

• The residential care setting has facilities in
  place to support EOLC so that the resident is not
  unnecessarily transferred to an acute setting
  except for specific medical reasons

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EOLC in Long Term Care

• While staff in long term facilities have much
  experience in dealing with death and dying, they
  may lack training in palliative and end of life
  care, which is recognised as a prerequisite to
  good quality care in long term facilities (Brazil
  and Vohra, 2005)
• A palliative care program within a nursing home
  can increase general knowledge of the problems
  faced in caring for the dying. (Stillman et al,
  2004)

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Barriers in providing EOLC in Long Term Care

• Lack of knowledge of palliative medicines and
  symptom control
• Lack of preparation for approaching death
• Not knowing when someone is dying or
  understanding the dying process
• Lack of multidisciplinary team work
• Lack of confidence in communicating about dying
• Cultural differences
• Willingness of staff to change
• (Watson et al, 2006)

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EOLC in Long Term Care

• Nurses identified the importance of ongoing
  symptom assessment and co-ordination of care.
• Assessments often made challenging by the lack of
  diagnostic test results
• Nurses needed to rely on their prior knowledge of
  the resident and of the dying process to
  determine at what point to let the families know
  death was likely

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EOLC in Long Term Care

• Management of physical symptoms, repositioning,
  mouth care, incontinence and skin care were
  highlighted as core components of EOLC.
• The ability to provide this care provided staff
  with the most personal satisfaction to them
• Staff were very familiar with each resident, the
  usual pattern of behaviour and his/her likes and
  dislikes by virtue of their long term
  relationship and could thus individualise their
  care . (Goodridge et al, 2005)

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EOLC in Long Term Care

• Education of families was an important part of
  EOLC, particularily with respect to symptoms of
  dying
• Families valued the teaching that occurred at
  this time, but it was equally important that
  nurses were sensitive to the families ability to
  cope with the information.

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EOLC and Dementia

• Demands of caring for someone in the late stages
  of Dementia often results in the sufferer being
  admitted to long-term care facilities
• The literature suggests that people with Dementia
  receive sub-optimal end of life care with
  inadequate palliation of symptoms.(Mitchell et al
  , 2004)

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National Council for Palliative Care (NCPC , 2006
)

• Outlines the need to understand palliative care
  for people with dementia as different to that of
  cancer patients.
• Specific needs of these patients arise from a
  prolonged disease trajectory, uncertain prognosis
• Poor cognition impairs their ability to express
  their wishes, verbalise their feelings of pain,
  discomfort and emotional anguish.

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Dementia and EOLC

• NCPC, identify 3 areas requiring special
  attention in caring for residents with advance
  dementia
• 1.Holistic assessment of pain and symptoms in end
  stage dementia
• 2.The burdens and strain experienced by carers of
  residents with Dementia
• 3. Making decisions about EOL.

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UK NICE Guidelines (2007)

• Dementia care should incorporate palliative care
  from the time of diagnosis until death
• Aim of care is to support the quality of life of
  people with dementia
• Enable them to die with dignity in a place of
  their choosing
• Support carers during their Bereavement, which
  may both anticipate and follow death

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Dementia and EOLC

• The role of the family very important
• The role of the family in decision making and
  communication with health care providers are
  elements that most strongly distinguish EOLC of
  persons with Dementia from those who are
  cognitively intact. (Sachs et al, 2004)

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Dementia and EOLC

• Decisions to use a palliative care approach in
  long term care were more common among persons who
  had Dementia (Sloane et al. 2008)

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Dementia and EOLC

• Palliative care to this population is not optimal
  in this setting
• Most residents are not recognised as dying,
  hospice referrals are infrequent and
  hospitalisations, burdensome treatments and
  potentially treatable distressing symptoms are
  common prior to death
• This may be attributed to the fact that advance
  Dementia is often not recognised as a terminal
  disease . ( Mitchell et al, 2004)

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Palliative Care for All (2008)

• Person centred approach that is advocated for
  people with Dementia intergrates well with
  Palliative care principles
• Challenges identified Timing of introduction of
  Palliative Care , clarity with regard to the role
  of PC, addressing ethical dilemmas that can
  present at EOL for people with Dementia, the
  ability to communicate and the role of advance
  directives.

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Dementia and EOLC

• From a person centred perspective the key
  challenge facing people living with Dementia is
  the threat of no longer being considered a person
  ( Kitwood, 1997)
• In Palliative Care and Dementia Care both
  approaches are concerned with care for the whole
  person, physical, social, emotional and spiritual
  needs.

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Dementia and EOLC

• Both Approaches are concerned with quality of
  life and Living until one dies.
• Includes those with whom the resident has close
  relationships with, family, care staff
• Person Centred Dementia care adds a central
  concern with a belief in the persons capacity for
  communication regardless of his/ her degree of
  impairment. (Kitwood, 1997.Downs,Small and
  Froggart, 2006)

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Challenges in providing EOLC in long stay units
(NCPC,2006)

• Out of hours access to medical help and drugs
• Anticipatory prescribing, the ability to hold
  some drugs in stock and have access to commonly
  used drugs
• The number of GPs involved in each unit
• Specialist Palliative Care nurse involvement

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Challenges /EOLC contd

• advance care planning
• Resuscitation issues
• Verification of Death
• Education of staff at induction and on-going
  training
• Cultural and language differences of both staff
  and residents

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Challenges and EOLC contd

• Staff turnover
• Residents with co-morbidity, few service users
  with cancer but a high incidence of COPD, HF, and
  Dementia
• Different patterns of dying and a difficulty in
  recognising the terminal phase.

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Internal factors affecting EOLC(Wowchuk et al,
2007)

• Lack of knowledge about principles and practice
  of palliative care
• Attitudes and beliefs about death and dying
• Staffing levels and lack of available time for
  dying residents
• Lack of physician support
• Lack of privacy for residents and families

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Internal Factors Contd

• Families expectations regarding residents care
• Hospitalisation of dying residents.

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Families

• Residential units need to incorporate the family
  in decision making processes about the care
  provided to dying residents.
• Research suggests staff is aware of this need and
  both nurses and care staff attempt to offer
  family a role in care (Hanson et al, 2000)

32
Families

• It may take a hospital admission for the staff,
  resident and family members to understand,
  recognise and agree that the resident is truly in
  the terminal phase of life.
• Travis et al (2002)

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Advanced Care Planning

• Decisions relating to resuscitation
• Feeding
• Symptom Control
• Preferences for the setting of care
• Spiritual and emotional Issues
• Help to define medical decisions, relieve
  suffering and provide meaning and dignity

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Advanced Care Planning

• advance care planning should co-ordinate and
  implement decisions through residents, family and
  healthcare professionals
• May increase the likelihood that a resident
  wishes not to be hospitalised or resuscitated
  will be respected

35
Advanced Care Planning

• May experience low compliance related to
• Physician, Nurse and relatives attitudes
• Lack of Clarity of Documentation
• Inconsistent or vague language in Documents (Levy
  et al,2008)

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EOLC Project

• Primary aim To Develop a quality initiative for
  residents in three Public Residential homes to
  improve EOLC in the last year of life

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EOLC ProjectDevelopment Phase

• Base line review of Documentation, reviewing
  charts of residents who died in the unit in the
  previous year, using EOL chart review tool
  (Teno,1999)
• Review of any Documentation relating to EOLC in
  each unit
• Focus Groups x 8

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Development Phase Contd

• Interviews with members of the Multidisciplinary
  team x 13
• Questionnaire survey of Nursing and Care staff.
  Palliative Care Education Survey. (Permission to
  use a questionnaire developed by the Specialist
  Palliative Care Services Dochas Centre Drogheda.
  We are grateful for their support )

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Development Phase Contd

• Staff asked to identify patients in their unit
  whom they would not be surprised to hear they had
  died within the next year.
• Patient review and referral to Community
  Palliative Care services if necessary

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Intervention Phase

• Staff Education
• Death Reviews
• Documentation Development
• Policy and Planning
• Link Nurse Development

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Evaluation

• Questionnaire
• Death Reviews
• Repeat Chart Audit of Deaths in the unit using
  EOL chart review tool as before.

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Acknowledgements

• This project is funded by the Irish Hospice
  Foundation
• Greatly appreciate the support from the Community
  units
• Directors of Nursing
• Dr Regina McQuillan and Dr Kevin Connaire St.
  Francis Hospice.