End of Life Care in the Residential Home Setting Una Molloy, RGN, RM, MSc Nursing Project Nurse St Francis Hospice Raheny

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)

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)

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)

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

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.

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.

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

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

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

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)

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)

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

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)

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.

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)

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.

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.

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

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)

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)

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)

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.

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.

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)

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

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

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.

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

Internal Factors Contd Families expectations regarding residents care Hospitalisation of dying residents.

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)

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)

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

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

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)

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

EOLC Project Development 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

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 )

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

Intervention Phase Staff Education Death Reviews Documentation Development Policy and Planning Link Nurse Development

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

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.