Management of Pain and Burdensome Symptoms in Nursing Home Patients

Abstract

The assessment and treatment of pain and burdensome symptoms is a complex entity in elderly nursing home patients with and without dementia. This thesis aims to investigate the efficacy of individual pain treatment on pain intensity in people with advanced dementia, and to explore the prescribing patterns of scheduled analgesic drugs in Norwegian nursing homes. Further, the thesis explores the change in pain and symptom intensity during pharmacological treatment in nursing home patients who are dying and investigates whether it is possible to estimate the day of imminent death in such patients. Three different studies provide data for this thesis. In Paper 1 we use data from a multicentre cluster randomised controlled trial (cRCT): “The Impact of Pain on Behavioural Disturbances in Patients with Moderate and Severe Dementia” (Pain- BPSD). Paper 2 is based on four data samples of scheduled analgesic drugs in Norwegian nursing homes between 2000 and 2011. For Paper 3, data are provided by a trajectory study entitled “Resource use and Disease Course in Dementia” (REDIC), that followed patients systematically from admission to a nursing home and over the course of three years or until death. Aims: In Paper 1, we investigate the efficacy of a stepwise protocol of treating pain (SPTP) on pain intensity and Activities of Daily Living (ADL) in nursing home patients with moderate and severe dementia and behavioural disturbances. In Paper 2, we explore the prescribing patterns of scheduled analgesic drugs in Norwegian nursing home patients between 2000 and 2011, examining associations with age, gender, cognitive function, and type of nursing home unit. In Paper 3, we study signs of imminent dying and change in pain and symptom intensity during pharmacological treatment in nursing home patients, from the day a patient was perceived as dying to the day of death. Methods: In Paper 1, we used secondary analyses from a 12-week cRCT including 352 patients with advanced dementia and behavioural disturbances from 18 nursing homes in Western Norway. The 60 clusters (single independent nursing home units) were randomised to intervention or control. Patients in the intervention group received individual treatment of pain with paracetamol (acetaminophen), morphine, buprenorphine transdermal system, and/or pregabalin. Participants who were randomised to the control groups received care as usual. The primary outcome measure was pain intensity assessed with the Mobilisation-Observation-Behaviour- Intensity-Dementia-2 (MOBID-2) Pain Scale. The secondary outcome measure was physical performance assessed by the Barthel ADL Index. Pain intensity scores were obtained from 327 patients (intervention n=164, control n=163) at four time points during the eight week intervention, with additional follow-up after a four-week washout period.In Paper 2, we used secondary analyses of four nursing home samples (three observational studies and one cRCT) from 2000 (n=1926), 2004 (n=1163), 2009 (n=850), and 2011 (n=1858), representing 14 Norwegian counties. Scheduled analgesic prescriptions were extracted from medication records, and the following groups were applied: peripheral analgesics (paracetamol and Non-Steroidal Anti- Inflammatory Drugs (NSAIDs)), weak opioids (codeine and tramadol), strong opioids (morphine, fentanyl, oxycodone, and buprenorphine), and adjuvant therapy (pregabalin, gabapentin, and amitriptyline). For Paper 3, we used data from a prospective, longitudinal trajectory trial including 607 patients from 47 Norwegian nursing homes during the first year after admission. We assessed the time between admission and the day of death, pain and burdensome symptoms, and pharmacological treatment during the last days and hours of life. Pain and burdensome symptoms were investigated using the Edmonton Symptom Assessment System (ESAS) and MOBID-2 Pain Scale. The level of dementia was assessed with the Clinical Dementia Rating scale (CDR), physical performance with Karnofsky Performance Scale (KPS), and Physical Self-Maintenance Scale (PSMS). Nutrition and bedsores were assessed with the Resident Assessment Instrument for Palliative Care (RAI-PC). Results: In Paper 1, we found that patients randomised to the intervention group conferred significant benefit from pain treatment on pain intensity compared with the control group at week 8 (P<0.001). After the four-week washout period between weeks 8 and 12, the pain intensity increased significantly. The overall ADL function did not improve by pain treatment. However, participants who were treated with paracetamol improved their ADL function after eight weeks (P=0.022). In Paper 2, we reported a 65% increase of the analgesic drug prescription in Norwegian nursing homes between 2000 and 2011. The prescription of paracetamol and opioids increased by 113% and 118%, respectively. Strong opioids (fentanyl, buprenorphine, morphine, and oxycodone) increased almost nine-fold from 1.9% in 2000 to 17.9% in 2011 (P<0.001). Compared with individuals without dementia, people with dementia received fewer analgesics in 2000, 2004, and 2009, a difference we did not find in 2011.In Paper 3, we showed that one in four patients died during the first year after nursing home admission. The identification of imminent dying was possible in 61% of the patients and was associated with increased fatigue and poor appetite. At the day of death, the administration of opioids, midazolam, and anticholinergic drugs increased significantly. The initiation of pharmacological treatment was associated with a reduction of pain intensity and symptoms such as anxiety. However, moderate and severe pain affected 60% of the patients on the day of imminent death, and was still high on the day of death (46%). Further, the prevalence of moderate and severe dyspnoea increased from 44% to 53% and death rattle from 8% to 19%, in the last days of life. Interestingly, respiratory symptoms such as dyspnoea and death rattle were not associated with the administration of opioids or anticholinergic drugs. Conclusions: A stepwise protocol of treating pain (SPTP) improved the intensity of pain in people with dementia and those treated with paracetamol enhanced their ADL function.Thus, it was substantial to find that the overall analgesic drug use increased from 35% to 58% in nursing home patients between 2000 and 2011 and that prescribing patterns were equal in patients with and without dementia in the 2011 sample. We suggest further that the identification of imminent dying may be challenging in nursing home patients and people with dementia, leading to a high symptom burden on the day of death. Respiratory symptoms in particular tend to increase towards the time of death. Our findings emphasise the necessity for staff education together with non-pharmacological and pharmacological interventions to improve the situation of elderly individuals who are dying. This thesis mirrors the complexity of symptom assessment and treatment of pain and burdensome symptoms in our ageing population and highlights substantial needs for evidence-based implementation studies to investigate the efficacy of individual interventions in dying nursing home patients and people with dementia.