Prevalence and factors associated with advanced care directives in a motor neuron disease multidisciplinary clinic in Australia

ObjectivesMotor neuron disease (MND) is a neurodegenerative disorder leading to functional decline and death. Multidisciplinary MND clinics provide an integrated approach to management and facilitate discussion on advanced care directives (ACDs). The study objectives are to analyse (1) the prevalence of ACD in our MND clinic, (2) the relationship between ACD and patient demographics and (3) the relationship between ACD decision-making and variables such as NIV, PEG, hospital admissions and location of death.MethodsUsing clinic records, all patients who attended the MND clinic in Liverpool Hospital between November 2014 and November 2019 were analysed. Data include MND subtypes, symptom onset to time of diagnosis, time of diagnosis to death, location and reason of death. ACD prevalence, non-invasive ventilation (NIV) and percutaneous endoscopic gastrostomy (PEG) requirements were analysed.ResultsThere were 78 patients; M:F=1:1. 44 (56%) patients were limb onset, 28 (36%) bulbar onset, 4 primary lateral sclerosis and 2 flail limb syndrome presentations. 27% patients completed ACDs, while 32% patients declined ACDs. Patients born in Australia or in a majority English-speaking country were more likely to complete ACDs compared to those born in a non-English-speaking country. There was no significant correlation between ACD completion and age, gender, MND subtype, symptom duration, NIV, PEG feeding, location of death.ConclusionOne-quarter of patients completed ACDs. ACDs did not correlate with patient age, gender, MND subtype and symptom duration or decision-making regarding NIV, PEG feeding or location of death. Further studies are needed to address factors influencing patients’ decisions regarding ACDs.

Outcomes and Cost of Patients With Terminal Cancer Admitted to Acute Care in the Final 2 Weeks of Life: A Retrospective Chart Review

Background: Patients with terminal conditions are often admitted to the emergency department (ED) for acute medical services, but studies have suggested that multiple ED admissions may negatively impact end-of-life (EOL) care. Research have shown that incorporating palliative care (PC) is integral to optimal EOL care, but it is an aspect of medical practice that is often neglected. The current study sought to provide an overview of health outcomes and hospital costs of patients with cancer admitted to The Ottawa Hospital and/or received acute medical services during their final 2 weeks of life. Cost comparisons and estimates were made between hospital and hospice expenditures. Methods: We conducted a retrospective chart review of palliative patients who died at The Ottawa Hospital in 2012. A total of 130 patients who visited the ED within 2 weeks of death were included in the analyses. Results: In this cohort of patients, 71% of admitted patients did not have advanced care directives and 85% experienced a metastasis, but only 18% had a PC medical doctor. Patients were hospitalized, on average, for 7 days and hospitalization costs exceeded the estimated hospice cost by approximately 2.5 times (Can$1 041 170.00 at Can$8009.00/patient vs Can$401 570.00 at Can$3089.00/patient, respectively). Conclusion: Our study highlighted the importance of PC integration in high-risk patients, such as those in oncology. Patients in our sample had minimal PC involvement, low advanced care directives, and accrued high costs. Based on our analyses, we concluded that these patients would have likely benefited more from hospice care rather than hospitalization.

Advanced Care Directives: Overcoming the Obstacles

Background Advanced care directives (ACDs) and end-of-life discussions are important and typically difficult to initiate because of the sensitive nature of the topic and competing clinical priorities. Resident physicians need to have these conversations but often do not in their continuity clinics. Objective We implemented a program to (1) increase physician opportunity to discuss end-of-life wishes with their patients, and (2) improve residents' confidence in leading discussions regarding ACDs. Intervention A total of 95 residents in an academic outpatient internal medicine resident continuity clinic participated in a formalized curriculum (didactic sessions, simulations, and academic detailing). Clinic workflow alterations prompted the staff to question if patients had an ACD or living will, and then cued residents to discuss these issues with the patients if they did not. Results Of the 77% of patients who were asked about ACDs, 74% had no ACD but were interested in discussing this topic. After our intervention, 65% (62 of 95) of our residents reported having at least 1 outpatient discussion with their patients. Residents reported increased confidence directing and discussing advanced care planning with older patients and conducting a family meeting (P < .01). Conclusions By delivering a formalized curriculum and creating a clinical environment that supports such discussions, resident physicians had more ACD discussions with their patients and reported increased confidence. When provided information and opportunity, patients consistently expressed interest in talking with their physician about their advanced care wishes.