Palliative Access Through Care at Home: experiences with an urban, geriatric home palliative care program.

The aging of the U.S. population has resulted in a large number of persons with multiple, chronic illnesses and gradual functional decline. Many older adults with these conditions are homebound and have great difficulty accessing medical care. They are also more likely to suffer from unaddressed symptoms and end-of-life care needs. Certain groups, such as African-American patients and patients with dementia, are even less likely to access palliative care and hospice services. Although the informal caregivers attending to such persons may become overwhelmed without adequate support, palliative care, which covers a broad population, is an optimal way to address many of these needs. This article describes a unique, urban, home-based geriatrics palliative care program (Palliative Access Through Care at Home (PATCH)) designed to address some of these unmet needs. After 1 year of providing service, a mixed-methods study consisting of chart review, telephone interviews, and face-to-face interviews was conducted to assess caregiver expectations of and satisfaction with the program. Caregivers for the elderly, mostly African-American patients, more than half of whom had dementia, were overall very satisfied with their experience, despite the large amount of time necessary to provide the care that patients required. Themes extracted during qualitative analysis were the desire to remain at home, the need for easy access to a practitioner specializing in geriatrics and palliative medicine, and the challenges of transitions of care. PATCH was able to address many of these needs and provide high levels of caregiver satisfaction.

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. DESIGN: Medication data were obtained using chart review. Recommendations for appropriate prescribing were achieved using a modified Delphi consensus panel. SETTING: Three long-term care facilities. PARTICIPANTS: Thirty-four patients with advanced dementia enrolled in the Palliative Excellence in Alzheimer Care Efforts Program were selected to evaluate medication use. Twelve geriatricians at the University of Chicago participated in the modified Delphi consensus panel. MEASUREMENTS: Prescription and over-the-counter medications were recorded for the 34 patients. Following the modified Delphi process, medications were characterized into one of four categories for use in palliative care patients with advanced dementia: never appropriate, rarely appropriate, sometimes appropriate, or always appropriate. RESULTS: Patients were taking an average of 6.5 medications at enrollment. Six patients were taking 10 or more medications daily. Consensus was reached ranking the appropriateness of 69 of 81 medication classes for patients with advanced dementia. Overall, 5% of the 221 medications prescribed at enrollment were considered to be never appropriate, and 10 of 34 patients (29%) had been taking a medication considered to be never appropriate. CONCLUSION: Based on these preliminary findings, consensus criteria for prescribing in advanced dementia are needed to decrease polypharmacy and reduce the use of medications that are of minimal benefit or high risk.

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 patient's preferred location of death, location of death, satisfaction with patient care, and assessment of patient's 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 symptom's 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.

To what extent do geriatricians document the most bothersome symptoms of patients with advanced dementia?

OBJECTIVES: To assess whether geriatricians documented the bothersome symptoms of patients with advanced dementia, proxy reports of the most-bothersome symptoms affecting those patients (as elicited in research interviews) were compared with what geriatricians who had seen those patients in a proximate clinic visit documented in the medical record. DESIGN: Retrospective chart review. SETTING: Outpatient geriatrics clinic at the University of Chicago. PARTICIPANTS: Fifty-seven pairs of patients with dementia (Functional Assessment Staging Tool stage 6 or 7) and their proxies. MEASUREMENTS: Clinic notes were reviewed for documentation of patients' bothersome symptoms that proxies reported during research interviews. Proxy reports had been recorded in the previously established Palliative Excellence in Alzheimer Care Efforts database. RESULTS: The most-bothersome symptom was documented at least once in 84.2% (48/57) of clinic notes. The second-most-bothersome symptom was documented in 70.3% (26/37) of clinic notes. Most symptoms were documented in the Assessment and Plan section of the note. CONCLUSION: Geriatricians identified and documented the vast majority of bothersome symptoms, as reported by proxies, of patients with moderate to severe dementia.

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. DESIGN: Cross-sectional analysis of an observational cohort study. SETTING: Academic outpatient geriatric clinic in Chicago, Illinois. PARTICIPANTS: A total of 115 dyads, mostly African American, consisting of community-dwelling persons with dementia and their caregivers. MEASUREMENTS: Patient report of demographics, noncancer pain, function, cognition, and depression. Caregiver report of patient agitation and over-the-counter and prescription medications. RESULTS: Sixty-two of 115 (54%) patients reported pain "on an average day." The caregivers of more than half of persons with dementia who reported pain "on an average day" did not report analgesic use. The majority of caregivers who reported analgesic use reported that patients took a World Health Organization Class I medication. No patients had been prescribed a Class III (strong opioid) drug. Fifty-three of 115 (46%) patients had potentially insufficient analgesia. In the logistic regression, insufficient analgesia was associated with greater age, Mini-Mental State Examination score of less than 10, and impairment in daily functioning. Insufficient analgesia was 1.07 times as likely (95% confidence interval (CI) = 1.01-1.14) for each additional year of age, 3.0 times as likely (95% CI = 1.05-9.10) if the subject had advanced dementia, and 2.5 times as likely (95% CI = 1.01-6.25) if the patient had any impairment in activities of daily living. CONCLUSION: In this convenience sample from a geriatric clinic, many persons with dementia and noncancer pain were not receiving pharmacological treatment. Those at greatest risk for insufficient analgesia were older, had moderate to severe dementia, and experienced impairments in activities of daily living.

Factors associated with self- and caregiver report of pain among community-dwelling persons with dementia.

BACKGROUND: Among cognitively intact patients, self- and caregiver report of patient pain has been associated with worse psychological health for both the patient and caregiver. Little existing research examines factors associated with patient self-report of pain and caregiver report of patient pain among community-dwelling persons with dementia. OBJECTIVE: To identify patient and caregiver factors associated with self- and caregiver report of patient pain among community-dwelling persons with dementia. DESIGN: Cross-sectional analysis of a longitudinal study using structured interviews with dementia patients and their family caregivers. SETTING AND SUBJECTS: Urban outpatient geriatrics clinics affiliated with a university hospital. Dyads composed of dementia patients and their family caregivers were approached prior to routine clinic visits to participate in the study. MEASUREMENTS: Relevant patient measurements included self-report of pain; cognitive, functional, and comorbidity assessments; a screen for depression; and demographic information. Relevant caregiver measurements included their report of patient pain and agitation, screens for depression and strain, and demographic information. RESULTS: Of 115 dyads, 37 patients (32%) and 57 caregivers (53%) reported the patient to be in pain. No patient or caregiver factors were significantly associated with patient self-report of pain. In the univariate analysis, caregiver reports of patient pain were associated with the patient not being depressed (p = .036), caregiver reports of patient agitation (p = .038), higher level of education in the caregiver (p = .029), and caregiver depression (p = .019). In multivariate logistic regression analyses, caregiver depression and patient agitation remained significantly associated with caregiver report of patient pain. CONCLUSIONS: In community-dwelling persons with dementia, self-report of pain was not associated with any other variables measured, suggesting that pain should be assessed through direct self-report and treated accordingly. Caregiver report of patient pain was associated with both caregiver report of patient agitation and caregiver depression. These findings suggest that clinicians may need to routinely assess patient pain, patient agitation, and caregiver depression. More research is needed to understand the relationship between these conditions.

Pain in community-dwelling persons with dementia: frequency, intensity, and congruence between patient and caregiver report.

To better understand the pain experience of persons with dementia and to describe what factors are related to congruence of pain reports within patient-caregiver dyads, a cohort study enrolled patient-caregiver dyads at a primary care geriatrics clinic. Thirty-two percent of persons with dementia self-report pain "right now." Of these, 65% report slight/mild pain, 27% moderate pain, and 8% severe pain or greater. Fifty-two percent of caregivers report their care recipients with dementia are in some pain "right now." Of these, 52% report slight/mild pain, 30% moderate, and 18% severe pain or greater. Fifty-nine percent of dyads agree on the presence or absence of patient pain. In multivariate analysis of dyadic congruence of pain reports by patient and caregiver factors, only patient factors predicted congruence. The odds of congruence of pain reports increase 3.7 (1.2-12.3) if the patient is male and decrease 0.938 (0.93-0.99) as the patient becomes more agitated. These findings suggest that community-dwelling persons with dementia report less pain than those in the nursing home and caregivers do a fair job of predicting patient pain.

Barriers to excellent end-of-life care for patients with dementia.

While great strides have been made recently in improving end-of-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will be called upon to provide primary care for a growing number of patients dying with dementia. There are great opportunities to improve end-of-life care for this vulnerable and underserved population.

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 patient's 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.

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.