Gavin W. Hougham

Integrating Palliative Medicine into the Care of Persons with Advanced Dementia: Identifying Appropriate Medication Use

OBJECTIVES: To evaluate the feasibility of developing consensus recommendations for appropriate prescribing for patients with advanced dementia using a new conceptual framework and to determine the frequency of inappropriate medication use based on these recommendations in a small sample of patients with advanced dementia.

Patients Dying with Dementia: Experience at the End of Life and Impact of Hospice Care

To evaluate the impact hospice enrollment has on the terminal care of patients with dementia and describe the symptom burden these patients experience, caregivers of dementia decedents were assessed in a mortality follow-back survey. Patients had been managed through academic outpatient geriatric clinics in Chicago, IL. A total of 135 family members or other knowledgeable informants of persons who had died with dementia were queried about the patients preferred location of death, location of death, satisfaction with patient care, and assessment of patients pain and most bothersome symptom. Patients who were enrolled in hospice were significantly more likely to die in their location of choice (odds ratio [OR] 9.67; 95% confidence interval [CI] 2.57-37.0), and less likely to die in the hospital, (OR 0.04; 95% CI 0.01-0.18), compared to nonenrollees. Caregivers of hospice enrollees were more likely to rate patient care as excellent or very good (OR 5.65; 95% CI 2.61-10.34), compared to nonenrollees. Over 50% of caregivers of hospice enrollees and nonenrollees reported patient pain at a moderate intensity or higher on average in the last two weeks of life. No effect was observed between a caregiver reporting pain at a moderate level or higher and whether the patient was enrolled in hospice (OR 0.58; 95% CI 0.22-1.54). Hospice enrollees did not experience improvement in their most bothersome symptoms frequency, severity, or amount of distress caused (P=0.21, 0.39, 0.95, respectively), compared to nonenrollees. These results suggest that dying patients with dementia who are enrolled in hospice programs are more likely to die in their locations of choice and their caregivers are more likely to perceive that care is excellent or good than those who do not obtain hospice services. No effect on pain or other symptoms could be demonstrated in this analysis.

Barriers to limiting the practice of feeding tube placement in advanced dementia.

OBJECTIVE In advanced dementia, many difficult decisions may arise as the disease progresses, including whether to use feeding by tube. Several recent articles question the benefit of percutaneous endoscopic gastrostomy (PEG) tube placement in persons with advanced dementia. However, patients with advanced dementia are still referred for PEG tubes. This study attempts to understand more about physician decisions to recommend PEG tube placement in patients with advanced dementia. DESIGN Mailed survey. SETTING Random sample of 500 physicians from the American Medical Association Masterfile. PARTICIPANTS Primary care physicians. MEASUREMENTS Physician knowledge, beliefs, and self-reported practices of PEG tubes in advanced dementia. RESULTS Of the 416 eligible participants, 195 completed surveys (response rate of 46.9%). A significant number of physicians believe PEG tubes have the following benefits in advanced dementia: reduce aspiration pneumonia (76.4%), and improve pressure ulcer healing (74.6%), survival (61.4%), nutritional status (93.7%), and functional status (27.1%). Most physicians underestimate 30-day mortality in patients who receive a PEG and more than half of physicians believe PEG tubes in advanced dementia are the standard of care. Also, a majority of physicians believe speech therapists, nurses, and nutritional support teams recommend feeding tubes, which influences their decision to recommend a PEG. Last, almost half of these respondents had a nursing home request PEG tube placement, leading physicians to recommend a PEG. CONCLUSIONS We find a notable discord between physician opinion, reported practice, and the literature regarding PEG tubes in advanced dementia that reveals some of the barriers to decreasing the referral of these patients for PEG.

Management of Noncancer Pain in Community‐Dwelling Persons with Dementia

OBJECTIVES: To explore the pharmacological treatment of noncancer pain in persons with dementia and identify predictors associated with insufficient analgesia.

Palliative Excellence in Alzheimer Care Efforts (PEACE): A Program Description

Hospice is the standard method for providing quality end-of-life care in the United States. However, studies reveal that persons with dementia are infrequently referred to hospice, that barriers exist to increasing hospice utilization in this population, and that patients with dementia would benefit from hospice or hospice-like services earlier in the disease course. The Palliative Excellence in Alzheimer Care Efforts (PEACE) program responds to these deficiencies, striving to improve end-of-life care of persons with dementia and to integrate palliative care into the primary care of patients with dementia throughout the course of the illness. The PEACE program is a disease management model for dementia that incorporates advance planning, patient-centered care, family support, and a palliative care focus from the diagnosis of dementia through its terminal stages. PEACE is coordinated through the primary care geriatrics practice of the University of Chicago. Patients and caregivers are interviewed every 6 months for 2 years, and a postdeath interview is conducted with caregivers. These interviews assess care domains important for the optimal care of persons with dementia and their caregivers. A nurse coordinator reviews interviews and provides feedback to physicians, facilitating enhanced individual care and continuous quality improvement for the practice. Initial feedback suggests patients have adequate pain control, satisfaction with quality of care, appropriate attention to prior stated wishes, and death occurring in the patients location of choice. Families voiced similar high marks regarding quality of care. This program demonstrates an innovative model of providing quality palliative care for dementia patients and their caregivers.

The Impact of Social Ties on Depressive Symptoms in U.S. and Japanese Elderly

This study examines the effects of social ties (with spouse, children, friends, neighbors, other relatives, and community groups) on depressive symptom levels in U.S. and Japanese adults aged 60 and over. Nationally representative survey data from the United States (N= 1,419) and Japan (N= 2,200) indicate that having a spouse, or increased contacts with friends, neighbors and relatives was associated with fewer depressive symptoms in both samples. The effects of spousal presence were significantly larger in the United States than in Japan. The presence of children was associated with fewer depressive symptoms in Japan only, and this effect was significantly stronger among those currently unmarried as opposed to those who are currently married. We discuss these similarities and differences between countries.

Conducting Empirical Research on Informed Consent: Challenges and Questions

She informed consent projects (ICPs) we describe here were designed to produce (1) new and improved methods for the informed consent process, (z) methods for confronting the challenges of obtaining consent for special or vulnerable populations, and (3) data to help inform and guide public policy development (Table 1). From the outset, the project investigators identified a number of conceptual and practical concerns and challenges in conducting empirical research on informed consent. These concerns and challenges were shared by all the investigators, despite the significant variability in the research methods used and the populations studied. Experienced researchers will recognize that some of these concerns and challenges are common to many kinds of research involving human subjects. Some, however, are unique to research on informed consent. We describe these matters for the purpose of fostering ongoing dialogue about the challenges researchers face in studying the informed consent process. Common Research Challenges

Speaking of research advance directives: Planning for future research participation

Objective: To examine one model of research advance directive as a possible way to reduce the mismatch between patient and proxy choices and also to learn more about how patients with mild to moderate dementia may want to keep decision making or cede it to their proxies in the future. Methods: Separate interviews were conducted with 149 dyads of dementia patients and family proxies about future enrollment in five types of research. Subsequent joint interviews were conducted with 69 of those dyads to discuss their separately articulated decisions and ask whether the patient prefers future enrollment decisions to be made as he or she directs today or as the proxy deems best in the future. Results: Patients chose to cede future decision making to their proxies in 82.9% of the trials. Patients ceded decisions to their proxies in 80.7% of those trials about which the dyad had given opposite answers (n = 74, 49.7%). Patients who had expressed discomfort about the prospect of the proxy making an enrollment decision in a trial (n = 49, 32.9%) ceded decision making to their proxies in 45.7% of those trials. Conclusions: Both patients and proxies were willing to discuss future research enrollment in the context of an advance directive for research. Such a document may be helpful to proxies and researchers in the future to judge the types of research and associated risks patients are willing to enroll in. Although most patients willingly cede future decisions to their proxies, a sizeable minority do not wish to do so.

What is the Quality of the Reporting of Research Ethics in Publications of Nursing Home Research

OBJECTIVE: To assess the quality of reporting of research ethics in published clinical research that involves a particularly vulnerable population: nursing home residents.

A longitudinal study of coping and burnout among Japanese family caregivers of frail elders

Objectives: The purpose of this study is to clarify causal relations between coping strategies and burnout in family caregivers of frail elders in Japan. Methods: Baseline and 1-year follow-up interviews were conducted with 546 caregivers living in suburban Tokyo. Using newly refined measures, five coping strategies of caregivers (Keeping Their Own Pace, Positive Acceptance of Caregiving Role, Diversion, Informal Support Seeking, and Formal Support Seeking), and caregiver burnout were measured, as well as several confounding factors. Results: After controlling for these confounding factors, results of cross-lagged effects modelling showed that adoption of a Diversion coping strategy decreased caregiver burnout, while increases in burnout decreased caregiver Positive Acceptance of Caregiving Role. Conclusions: The beneficial effect of an Adaptive Avoidance Coping strategy, Diversion, on caregiver mental health was confirmed in this two-wave longitudinal study. The mechanism by which Diversion appears to work is by containing caregiving stressors from completely spilling over into caregivers’ personal lives. In addition, we also show that preventing a decline in caregiver mental health (i.e. an increase in burnout) allowed caregivers to more easily embrace the caregiving role and, as a result, elder care-recipients were better positioned to receive high quality care.