Use of Telephone- and Internet-Based Support to Elicit and Address Financial Abuse and Mismanagement in Dementia: Experiences from the Care Ecosystem Study

Background: Financial mismanagement and abuse in dementia have serious consequences for patients and their families. Vulnerability to these outcomes reflects both patient and contextual factors. Objective: Our study aimed to assess how multidisciplinary care coordination programs assist families in addressing psychosocial vulnerabilities and accessing needed resources. Methods: Our study was embedded in a clinical trial of the Care Ecosystem, a telephone- and internet-based supportive care intervention for patients with dementia and caregivers. This program is built around the role of the Care Team Navigator (CTN), an unlicensed dementia care guide who serves as the patient and caregiver’s primary point of contact, screening for common problems and providing support. We conducted a qualitative analysis of case summaries from a subset of 19 patient/caregiver dyads identified as having increased risk for financial mismanagement and abuse, to examine how Care Ecosystem staff identified vulnerabilities and provided support to patients and families. Results: CTNs elicited patient and caregiver needs using templated conversations to address common financial and legal planning issues in dementia. Sources of financial vulnerability included changes in patients’ behavior, caregiver burden, intrafamily tension, and confusion about resources to facilitate end-of-life planning. The Care Ecosystem staff’s rapport with their dyads helped them address these issues by providing emotional support, information on how to access financial, medical, and legal resources, and improving intra-familial communication. Conclusion: The Care Ecosystem offers a scalable way to address vulnerabilities to financial mismanagement and abuse in patients and caregivers through coordinated care by unlicensed care guides supported by a multidisciplinary team.

Systemic Factors Impacting Mortality and End-of-Life Issues in Critical Care

This chapter reviews issues related to mortality in the intensive care setting. Relevant literature is summarized and emphasizes the common need patients have for more frequent assessment, dependency on technology support, and psychosocial intervention. The authors stress the importance of interdisciplinary teams and the unique staffing and workforce challenges they encounter. Despite agreement on its importance, the authors maintain that end-of-life care is associated with a lack of consensus around its implementation at the bedside. The diversity within patient groups, diseases and conditions, and health care providers results in an environment in which the interplay of a growing number of variables influences the engagement of patients and families in discussions about end-of-life planning and care, futility, palliation, or withdrawal of support.

Serious illness conversation and end of life care utilization at an academic medical center.

29 Background: Hospice has been associated with improved quality of life for patients, cost savings, and reduction in caregiver-grief-related depression. While cancer patients make up a plurality of hospice utilizers nationally, many patients are only on hospice for a limited period (in Medicare patients, a median of 18 days). Studies suggest engaging cancer patients to discuss goals and priorities using the Serious Illness Conversation (SIC) Guide has a positive impact on prognostic understanding and end-of-life planning. More frequent utilization of SICs may prompt earlier enrollment of oncology patients in hospice when appropriate. Methods: We identified cancer patients enrolled in hospice at the Abramson Cancer Center at Penn Presbyterian Medical Center from 2019-2020 after all providers received SIC training. Patient demographics, cancer diagnosis, type of hospice (home versus inpatient), SIC usage, palliative care referral patterns and time on hospice were abstracted. Results: 104 patients were enrolled in hospice during the study period. The majority of patients were female (51%). 45% were Caucasian, and 31% were African American. The most common cancer diagnoses were thoracic (52%) and gastrointestinal (32%) malignancies. 85 patients (82%) were enrolled on home hospice and 19 patients (18%) inpatient hospice. Palliative care usage included 50 inpatient and 24 outpatient consultations; 30 patients (29%) in the cohort never utilized palliative care. 52 (50%) of patients did not have a SIC. 47% (40 patients) enrolled in home hospice had an SIC while 63% (12 patients) on inpatient hospice had an SIC. The median time interval between a patient’s SIC conversation and hospice enrollment was longer in home hospice patients (74 days) compared to inpatient hospice (33 days). Patients on home hospice spent an average of 44 days on hospice versus 2 days in the inpatient setting. Conclusions: Half of the patients at Penn Presbyterian Medical Center enrolled in hospice during the study period did not have an SIC, and 29% did not see palliative care prior to starting hospice. The median time from SIC initiation to hospice enrollment was significantly longer for patients on home hospice compared to inpatient hospice suggesting a need for earlier SIC interventions. Patients enrolled in inpatient hospice spent a considerably shorter period of time on hospice also underscoring the importance of earlier end of life planning. Our findings indicate a need for additional interventions to facilitate earlier SIC conversations in the outpatient setting and a demand for increased palliative care access.

Unwelcome memento mori or best clinical practice? Community end of life anticipatory medication prescribing practice: A mixed methods observational study

Background: Anticipatory medications are injectable drugs prescribed ahead of possible need for administration if distressing symptoms arise in the final days of life. Little is known about how they are prescribed in primary care. Aim: To investigate the frequency, timing and recorded circumstances of anticipatory medications prescribing for patients living at home and in residential care. Design: Retrospective mixed methods observational study using General Practitioner and community nursing clinical records. Setting/participants: 329 deceased adult patients registered with Eleven General Practitioner practices and two associated community nursing services in two English counties (30 most recent deaths per practice). Patients died from any cause except trauma, sudden death or suicide, between 4 March 2017 and 25 September 2019. Results: Anticipatory medications were prescribed for 167/329 (50.8%) of the deceased patients, between 0 and 1212 days before death (median 17 days). The likelihood of prescribing was significantly higher for patients with a recorded preferred place of death (odds ratio [OR] 34; 95% CI 15–77; p < 0.001) and specialist palliative care involvement (OR 7; 95% CI 3–19; p < 0.001). For 66.5% of patients (111/167) anticipatory medications were recorded as being prescribed as part of a single end-of-life planning intervention. Conclusion: The variability in the timing of prescriptions highlights the challenges in diagnosing the end-of-life phase and the potential risks of prescribing far in advance of possible need. Patient and family views and experiences of anticipatory medication care, and their preferences for involvement in prescribing decision-making, warrant urgent investigation.

Palliative Care for the Interstitial Lung Disease Patient a Must and Not Just a Need

Patients with interstitial lung disease (ILD) have many unmet palliative care needs. The majority of patients with chronic ILD have poor access to a specialist in palliative medicine and that is due to several barriers. The mortality for the ILD patient is high and reaches up to 80% if admitted to the ICU with respiratory failure. Palliative care addresses symptoms in diseases where cure is unlikely or impossible. Palliative care consultation also ensures communication among patients, caregivers and providers regarding treatments, prognosis, and end of life planning. Methods: We performed a literature review on palliative care and ILD, accessing articles published since 2002. We found 71 articles related to the topic. We chose 37 that were most relevant and with no redundancy of information to include in this review. Objectives: Summarize the palliative care needs of patients with ILD, discuss the barriers to receiving palliative care, and summarize clinical practice for providing palliative care to this patient population.

Planning for End of Life

Background: Oncology provider discussions of treatment options, outcomes of treatment, and end of life planning are essential to care for patients with advanced malignancies. Studies have shown that despite this, many patients do not have adequate care planning, including end of life planning. It is thought that the accessibility of information outside of clinical encounters and individual factors and/or beliefs may influence the patient’s perception of disease. Aims: The objective of this study was to evaluate if patient understanding of treatment goals matched the provider and if there were areas of discrepancy. If a discrepancy was found, the survey inquired further into more specific aspects. Methods: A questionnaire-based survey was performed at a cancer hospital outpatient clinic. 100 consecutive and consenting patients who had stage IV non-curable lung, gastrointestinal (GI), or other cancer were included in the study. Patients must have had at least 2 visits with their oncologist. Results: 40 patients reported their disease might be curable and 60 reported their disease was not curable. Patients who reported their disease was not curable were more likely to be 65 years or older (P-value: 0.055). They were more likely to report that their doctor discussed the possibility of their cancer getting worse (78.3% VS 55%; P-value 0.024), that their doctor discussed end of life plans (58.3% VS 30%; P- value: 0.01), and that they had appointed a health care decision-maker (86.7% VS 62.5%; P-value: 0.01). 65% of patients who thought their disease might be curable reported that their doctor said it might be curable, compared with only 6.7% of patients who thought their disease was not curable (p < 0.001). Or, equivalently, 35% of patients who thought their disease might be curable reported that their doctor’s opinion was that it was not curable, compared with 93% of patients who thought their disease was not curable (p < 0.001). Patients who had lung cancer were more likely to believe their cancer was not curable than patients with gastrointestinal or other cancer, though the difference was not statistically significant (p = 0.165). Patients who said their disease might be curable selected as possible reasons that a miracle (50%) or alternative medicine (66.7%) would get rid of the cancer, or said their family wanted them to believe the cancer would go away (16.7%) or that another doctor said it would (4.2%). Patients who said their disease might be curable said they did so due to alternative medications, another doctor, or their family. Restricting to the 70 patients who reported their doctors telling them their disease was not curable, 20% of them still said that they personally felt their disease might be curable. Patients below 65 years of age were more likely to disagree with the doctor in this case (P-value: 0.047). Conclusion: This survey of patients diagnosed with stage IV cancer shows that a significant number of patients had misunderstandings of the treatment and curability of their disease. Findings suggest that a notable proportion kept these beliefs even after being told by treating physicians that their disease is not curable.