Palliative care in aged care facilities in rural Australia Geoffrey Mitchell Professor of General Practice and Palliative Care University of Queensland, Australia g.mitchell@uq.edu.au
Objectives of study 1. Identify the needs related to end of life care as perceived by the carers of the residents 2. Identify the education and training needs of health professionals and the extent to which the planned intervention met these needs and changed practice
Methods Data were collected from low care and high care facilities Methods used for baseline data collection: Focus groups Audit family members health care providers (two individual interviews) Minimum Data Set (MDS) collected on all residents on one day. Data related to the health condition, aspects of clinical care practices.
Methods Data Analysis Qualitative data were analyzed by thematic analysis to determine perceptions of current practices and needs Quantitative data were analyzed statistically to determine: demographic characteristics extent of incorporation of quality improvement principles into clinical care Importance of palliative status and functional assessment in influencing clinical care
Potential sources of error Bias Motivation for participation Withholding information Terminology use Palliative care vs terminal care Advance Care Plan vs Advance Directive
RESULTS
Demographics of Close relatives interviewed (n=27) Age Median 67, range 40-76 Gender - female 82% Relationship Spouse 7% Adult child, child-in-law) 82% Other 11%
Demographics of staff (n=28) Female 92% Years in profession Mean 17.3 (SD 11.6) Yrs in current position Mean 7.4 (SD 7.2) Role Nursing (registered) 25% Nursing (not registered) 36% Nursing (not disclosed) 18% GP 11%
Staff perceptions of current care and needs Palliative Approach the RACF can provide a more appropriate environment than a hospital.it s beautiful. The residents at the facility are surrounded by staff that they know. The environments their own.
Many staff noted difficulties counselling families about transition to palliation They won t accept that their loved one is in the process of passing away.
Multidisciplinary teams No apparent formalized palliative care teams Variable accessibility of GPs usually improved for palliative patients Interest in case conferencing Case conferencing is a fantastic opportunity Every facility has the capacity to do it and each doctor would be well remunerated to do it. General satisfaction with Allied Health Services, some local shortages Widespread shortage of appropriate dental services
Communication Need improved communications between health professionals Internal External Between sectors I find just working on the floor, I m not a Div 1, but I find that the [more senior staff] may have consultations with family and stuff then we only get it second hand down the line..
.90% of the time when they re [RACF staff] ringing you about a problem it s because there s been communication that s cocked up.. (GP)
Satisfaction with care - families Families generally satisfied It does take the worry away and the knowledge that she s being looked after. They re doing here what we could never, ever do at home. We haven t got any complaints. I just hope it s still there and as good as this when I have to go in Families who reported problems indicated they may be caused by staff shortages
Satisfaction with care health care providers Many staff said they do a good job of palliative care given the constraints but expressed regret at not being able to spend the extra time required for palliative care: I d like to see facilities have a little bucket of money there from the government so that when residents are palliative care and staff are doing the extra for them, you re not actually taking away from the other residents. Because that is what occurs within facilities Nurse GPs reported satisfaction with the care provided by staff
Staff s perceived limited skills 1. Ability to provide adequate support for families And it s always after hours and it s always on weekends when you can t just ring [nurse manager] and say; Look, can you come and talk to the family? And later..it s never enough for families. They ll love you and they ll hug you and they ll kiss you but at the end of the day I don t feel like I ve done enough for them.
2. Pain and Symptom Management Difficulties largely related to use of pain medication (drugs of dependence). Shortage of qualified nurses on duty especially after hours Inaccessibility of some GPs, especially after hours (for ordering drugs)
Hesitancy of some medical and nursing staff to administer the drugs There s a lot of myths around about opioids and Morphine aren t there? People still believe: 5 mgs, what if I overdose them? If I give this at the beginning of my shift and they happen to die towards the end of my shift.. Perceived gaps in skills Opposition of some family members
4. Psychological care Indications that staff attend well to the psychological needs of the residents Most families reported staff attending to their needs Many staff reported feeling inadequate in attending to the psychological needs of families due to: Inadequate time Inadequate skills
5. Including families in the care Most but not all, families reported being kept well informed of the residents well being and involved in the care Not all families appear to be included in care planning 6. Spiritual Care All groups noted strong spiritual support for residents with provision of multi-denominational services and individual pastoral care visits 7. Little Bereavement Support for family or staff
Analysis of perceptions of current care and needs - Relatives Accommodating culture related needs Language barriers some instances Expectations of caring for the elderly We re [family] supposed to look after Mum and Dad [not put them in a home] (staff) Revealing diagnosis Don t tell my mother that she s got cancer or she s dying with cancer. Yet the patient knows. The patient sees they are dying (staff) Use of opioids
Quantitative assessment of Aged Care Facilities palliative care Census all patients in 16 facilities assessed on one day. Demographics Medical diagnosis the primary palliative diagnosis Quality care indicators Document of care preferences Presence of advance care plan Case conference Use of a care pathway ED visits or unexpected hospital admissions
Palliative care phase stable, unstable, deteriorating/ terminal, bereaved Palliative Problem Severity Score
Sample characteristics N=723 (%) Gender - Female 67% Age 80 78% Presence of advanced, progressive disease - Yes Phase of palliation 87% Stable 91% Unstable 4% Deteriorating / Terminal 3% Died <1% (n=1) Not indicated 2%
Primary Palliative Disease Disease category % Mental and behavioural (= Dementia) 28% Diseases of circulatory system 14% Cerebrovascular diseases 8% Endocrine, nutritional, metabolic 6% Diseases of Nervous system 5% Diseases of Respiratory System 5% Neoplasia 5%
Quality indicators Care Planning and Case Conferences 75% had care preferences recorded. No difference in the recording of care preferences by phase of palliation Virtually all residents who were unstable, deteriorating or terminal had a pathway care plan (compared to stable patients p=0.046) 81.6% of stable residents had a care pathway No difference by phases of palliation There is a significant proportion of residents with an existing ACP
Were Palliative designated patients really ill? Relationship of palliative phase to AKPS P<0.001
Hospital admissions by palliative phase Not predicted by AKPS Not predicted by presence of care plan Favoured patients designated unstable p<0.001
Summary of findings Participating RACFs care well for these residents given the constraints namely: Workforce shortages particularly in aged care. Inadequate presence of, or access to, medical and suitably qualified nursing personnel, especially after hours Gaps in skills and expertise
Staff frustrations Inadequate communication between health care providers at times Inadequate time for staff to meet the special needs of residents in palliation and their families Variable accessibility of GPs
Self-reported staff skill deficiencies Pain management for many Addressing the psychological needs of families Addressing Cultural needs Bereavement counseling