Transcript End of Life Care in the Residential Home Setting

Una Molloy, RGN, RM, MSc Nursing
Project Nurse St Francis Hospice Raheny
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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 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)
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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Families expectations regarding residents
care
Hospitalisation of dying residents.
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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)
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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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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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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
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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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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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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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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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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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Staff Education
Death Reviews
Documentation Development
Policy and Planning
Link Nurse Development
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Questionnaire
Death Reviews
Repeat Chart Audit of Deaths in the unit
using EOL chart review tool as before.
Relationship
Knowing
Connectedness
Resident
EOLC
Family
Prolonged
Disease
Trajectory
Dementia
Confidence
Knowledge
Competence
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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.