Diagnoses, symptoms and outcomes in aged care residents referred to a community palliative care service

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Diagnoses, symptoms and outcomes in aged care residents referred to a community palliative care service Dr. Catherine Brimblecombe Aged Care Registrar, Western Health Advanced Trainee in Geriatric & Palliative Medicine

Background Ageing population: absolute & proportion Ageing associated with Comorbidity Functional impairment & institutionalisation Residential Aged Care Facilities ABS 2013 Growing population Ageing population AIHW 2012

Background 2005: 26% of all deaths in Australia (32% of those aged 65+) occur in residential care Broad et al 2013 2012-13: 7.9% of all new admissions to Australian ACF requiring palliative care (5.6% of all residents Higher with increasing age AIHW 2014

Background Access to services Guidelines & advisory service Identify Palliative goals Need for specialist palliative care (SPC) involvement Accept Significant variability between SPC services Consultation/advice only model Auto-accept & review all ACF referrals

Background Figures on proportion of specialist palliative care patients residing in ACF not readily available July-December 2013: of all referrals to ambulatory/community palliative care, 9.2% nationally (16.2% in Victoria) received directly from ACFs PCOC Report 16, 2014

Service studied Mercy Community Palliative Care Inner & outer west of Melbourne

Study aims Establish proportion of referrals to CPCS of ACF residents Clarify referral patterns & determine whether standard referral details can be used to predict symptom care needs & episode outcomes Review prevalence of key diagnoses and evaluate for any relationship with symptom prevalence and episode outcomes

Study method Low-risk HREC approval for retrospective cohort design Identify referrals of ACF residents Data collection Patterns: source, reason, urgency Outcomes: admit/non-admit, reason for ending episode, episode duration Primary diagnoses & comorbidities Admission: palliative care phase, symptoms & performance status

Results

Population 6 months referrals reviewed 01 July 31 December 2013 955 total referrals received (uncorrected) 268 unique referrals of permanent ACF residents* *includes new permanent admission to ACF from hospital 162 (60.4%) female Mean age 84.4 years (range 43.2-99.4 years)

Source Referrals ACF 213 (79.5%), public hospital 47 (17.5%) Urgency Urgent 131 (48.9%), routine 81 (30.2%) Reason SM 54 (20.1%), EOLC 27 (10.1%), nonspecific palliative care 185 (69.0%)

Referral outcomes Admitted = 214 Deceased = 163 At ACF = 157 Acute hospital = 4 PCU/hospice = 2 Discharged = 49 Other = 2 Not admitted = 54 Deceased prior = 45 Declined = 9 Patient/family = 3 CPCS = 3 ACF = 2 GP = 1 Mean admitted episode duration 47.4 days (95%CI 38.0-56.8, range 0-506)

120 Diagnosis: primary 100 N= 80 60 40 local liver renal 35.8% Dementia 24.3% Cancer 76.5% 16.4% Organ failure 7.5% Neurological 16.0% Others 20 metastatic cardioresp dysphagia stroke 0 ICH systemic

Overall prevalence 59.0% Dementia 56.0% Chronic organ disease/failure 27.2% Cancer 31.3% Neurology/stroke

Symptoms

Symptom prevalence Variable estimates of pain prevalence in nursing homes Australia 27.8% point prevalence in NH residents (n=917) McClean & Higginbotham, 2002 69% of palliative residents (non-malignant) over 10 weeks (n=69) Parker et al., 2005 International UK: 37% chronic non-cancer pain, 2% cancer pain Allcock et al., 2002 US: 14.7% had pain at both of 2 assessments 60-180 days apart Teno et al., 2001

Pain prevalence Prevalence of pain on admission assessment: 53.5% (106/198) Dementia (n=71) Cancer (53) Organ failure (29) Pain 50.7% 50.9% 72.4% 0.11 No difference by referral source (43-54%, p0.85) or urgency of referral (49-57%, p0.62) p

Other symptoms in palliative care Dyspnoea (severe) Claessens et al., 2000 (SUPPORT) 32% Stage III-IV NSCLC, 56% COPD Estimated 44-75% of deceased ACF residents experienced dyspnoea in final months of life Gonzales et al., 2011 Nausea systematic review Solano et al., 2006 6-68% cancer, 17-48% cardiac, 30-43% renal No info COPD, dementia 17% in ACF residents in 48h prior to death Brandt et al 2006

Symptom prevalence OVERALL (n=198) Dementia (71) Cancer (53) Organ failure (29) Dyspnoea 26.3% 15.5% 22.6% 55.2% 0.01 Nausea 9.1% 2.8% 15.1% 20.7% <0.01 No association of dyspnoea with referral source (26-29%, p0.98) or urgency (24-27%, p0.92) No association of nausea with referral source (8-14%, p0.49) or urgency (8-14%, p0.42) p

Overall, 42.0% of patients (n=84) admitted scored 2 or higher on at least 1 physical symptom Symptom severity OVERALL (n=200) Dementia (71) Cancer (53) Organ failure (30) p No physical symptoms 7.5% 8.5% 7.5% 3.3% 0.65 PSS Pain 2+ 14.5% 9.9% 15.1% 26.7% 0.10 PSS OS 2+ 33.5% 25.4% 32.1% 56.7% 0.09 Psychological distress PSS 2+ 7.5% 4.2% 3.8% 23.3% <0.01

Outcomes

Episode outcomes DIAGNOSIS SOURCE REASON URGENCY OVERALL ACF SM Urgent Dementia (46) (166) (97) Hospital EOLC Routine Cancer (20) (58) (67) Other NOS Organ (144) (48) (8) (32) P (74) (39) Deceased 76.2% 75.9% 63.0% 78.4% 79.7% 78.9% 85.0% 76.1% 76.3% 87.5% 80.6% 75.0% 71.9% 0.71 0.03 0.89 0.34 Admitted patients who died (n=163) had mean episode duration 29.7 days vs 104.6 days for discharged patients (n=49) (p<0.001) DIAGNOSIS Mean duration REASON OVERALL URGENCY SOURCE (n=213) SM Dementia Urgent ACF (46) (166) (97) (74) EOLC Cancer Routine Hospital (20) (58) (68) NOS Organ Other (144) (48) (8) (32) (39) P 47.4 days 70.0 27.2 31.4 42.9 43.5 79.1 61.9 57.0 39.8 57.8 59.2 94.6 0.04 <0.001 0.008 0.08

n=45 (16.8%) Death prior to admission More likely for non-malignant (eg. dementia, organ failure) patients (20.8% and 22.7% respectively) than cancer patients (6.2%) (p0.02) Less likely for routine referrals (9.9%) than unspecified (16.8%) and for urgent (22.1%) (p0.06)

Significance of admission assessment Australia-modified Karnofsky Performance Status Abernethy et al., 2005 AKPS OVERALL (202) 50-70 33 (16.3%) 10-40 169 (83.7%) Dementia (72) Cancer (53) Organ (30) Deceased 6 (8.3%) 16 (30.2%) 5 (16.7%) 18 (54.5%) 66 (91.7%) 37 (69.8%) 25 (83.3%) 140 (82.8%) Mean episode 77.6 days 33.9 days p0.06 p0.01 p<0.001

Significance of admission assessment Palliative care phase Smith 1996 PHASE N (209) Deceased (76.2%) Mean episode duration (47.4) 1 stable 53 (25.4%) 32 (60.4%) 78.9 days 2 unstable 21 (10.0%) 15 (71.4%) 47.5 3 deteriorating 106 (50.7%) 86 (81.1%) 39.0 4 terminal 29 (13.9%) 28 (96.6%) 6.3 35.6% of cancer patients in P1 vs. 21.9% organ failure & 18.9% dementia (p0.08) p0.001 p<0.001 1.7% of cancer patients in P4 vs 15.6% organ failure & 21.6% dementia (p0.003)

Summary Aged care facilities role in provision of palliative care ACF residents & SPC comprise over 1/4 of all referrals to MCPC have different diagnoses cf. general SPC population most have at least 1 other serious comorbidity Patients with primary diagnosis of cancer referred earlier longer episodes, higher performance status, more stable (P1) & less likely to die between referral and admission Nearly half of referrals are urgent. Associated with shorter episodes and higher chance of dying prior to admission.

Summary No difference in mortality between diagnostic groups Similar prevalence of pain across dementia, cancer & organ failure groups Severe symptoms possibly less frequent in dementia group Potential communication barrier Moderate-severe psychological distress more frequent in organ failure group 42% of patients are experiencing physical symptoms graded at least moderately severe on admission

Areas for improvement Referral timeliness & recognise need for SPC Especially for non-malignant groups Identification of referral request Responsiveness for urgent referrals Flexibility for anticipatory referrals: model of care Background education and support for organ failure patients Differentiate palliative approach from SPC eg. patients with no symptoms

References Australian Bureau of Statistics (2013) Population projections, Australia, 2012 (base) to 2101 (cat. no. 3222.0), November 2013. AIHW (2012) Residential aged care in Australia 2010-11: a statistical overview. Aged care statistics series no. 36. Cat. no. AGE 68. Canberra: AIHW. Broad J, Gott M, Hongsoo K, Chen H, Connolly M (2013). Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential care in 45 countries, using published and available statistics. Int J Public Health 58, 257-67 AIHW Palliative care services in Australia 2014. Cat. no. HWI 128. Canberra: AIHW. PCOC (2014) Report 16 July-December 2013 Parker D, Grbich C, Brown M, Maddocks I, et al. (2005) A palliative approach or specialist palliative care? What happens in aged care facilities for residents with a noncancer diagnosis? J Pall Care, 21(2) 80-7 McClean W & Higginbotham N (2002) Prevalence of pain among nursing home residents in rural New South Wales. Med J Aust, 177(1), 17-20 Allcock N, McGarry, J. Elkan, R (2002) Management of pain in older people within the nursing home: a preliminary study. Health Soc Care Community, 10(6) 464-71 Teno J, Weitzen S, Wettle T, Mor V (2001) Persistent pain in nursing home residents. JAMA 285(16) 2081 Claessens M, Lynn J, Zhong Z, et al. (2000) Dying with lung cancer or chronic obstructive pulmonary disease: insights from SUPPORT. J Am Geriatr Soc, 48(5 Suppl):S146-S153 Gonzales MJ, Widera E. (2011) Nausea and other nonpain symptoms in long-term care. Clin Geriatr Med, 27(2):213-28. Solano J, Gomes B, Higginson I (2006) A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage, 31(1) 58-69 Brandt HE, Ooms ME, Deliens L, van der Wal G, Ribbe MW. (2006) The last two days of life of nursing home patients--a nationwide study on causes of death and burdensome symptoms in The Netherlands. Palliat Med, 20(5):533-40. Abernethy A, Shelby-James T, Fazekas B, Woods D, Currow D (2005) The Australia-modified Karnofsky Performance Status (AKPS) Scale: A Revised Scale for Contemporary Palliative Care Clinical Practice. BioMed Central Palliative Care, 4, 1-12 Smith M (1996) Palliative care casemix - stage 2 development: a national classification for any site of care. 8th National Casemix Conference, Commonwealth Department of Human Services and Health