Scientific abstracts -- 2009 Annual Assembly, American Academy of Hospice and Palliative Medicine

March 27, 2009

AUSTIN, Texas - Hospice and palliative medicine investigators presented preliminary research findings at paper sessions held during the Annual Assembly of the American Academy of Hospice and Palliative Medicine, in collaboration with the Hospice and Palliative Nurses Association, on March 25- 28, 2009, at the Austin Convention Center in Austin, Texas.

EMBARGOED FOR FRIDAY, March 27, 2:20 pm CT

Community Characteristics Predict Availability of Hospice (413-C)
Lead author: Maria J. Silveira, MD MA MPH, University of Michigan, Ann Arbor, MI
(Silveira has disclosed no relevant financial relationships.)

1. Gain understanding on why availability of hospice is important to define and explore.
2. Describe the results of a study to explore availability of hospice.

I. Background. Hospice is underutilized by racial and ethnic minorities as well as elderly adults. Patient and provider knowledge and demand are widely believed to be the strongest predictors of hospice utilization; however, ready access to hospice may also be important. Still, the availability of hospice has yet to be described and its determinants understood.

II. Research Objectives. (1) To describe geographic variation in the availability of hospice in the United States; (2) To explore the community-level predictors of that variation.

III. Methods. We used data from Medicare to identify the location of US hospices and their service areas. Our outcome of interest was county-level availability of hospice defined according to the amount of geographic clustering of hospice measured using geospatial technology. We used multivariate regression to test the relationship between this outcome and county wealth (% households with incomes > $100,000) and education (% with a high school diploma), adjusting for confounding by race (% blacks), ethnicity (% Hispanics), age (% > age 65), population count, and area.

IV. Results. For every 1% increase in the proportion of households with incomes >$100,000, there was a 16% greater chance of being in the next highest category of hospice availability. For every 1% increase in high school education, there was a 24% greater chance of being in the next highest category. For every 1% increase in elderly adults in a county, there was a 10% lower chance of being in the next highest category. In testing for confounding, we found wealth, education, and age each influenced the strength, though not the significance, of the relationship between our predictors of interest and availability. There was no confounding by race and ethnicity.

V. Conclusions. The availability of hospice is greater in communities with larger proportions of wealthy, educated, and young residents.

VI. Implications for research, policy, or practice. To address disparities in the utilization of hospice, policy-makers may need to address inequities in the availability of hospice first.


Management of Implantable Cardiac Defibrillators in Patients on Hospice: Results of a Nationwide Geographically Weighted Survey (311-B)
Lead author: Nathan Goldstein, MD, Mount Sinai Hospital, New York City
(Goldstein has disclosed no relevant financial relationships.)

1. Gain understanding in current hospice practices with regards to management of implantable defibrillators for patients near the end of life.
2. Gain understanding in frequency with which patients on hospice receive shocks from their implantable defibrillator.
3. Identify core elements which should be included in formal policies relating to deactivation of implantable defibrillators.

I. Background. Implantable Cardioverter Defibrillators (ICDs) have been shown to prevent sudden death, but communication about deactivation in patients near the end of life is rare.

II. Research Objectives. To determine the prevalence of hospices with policies about ICD deactivation, the frequency with which hospice patients receive shocks from ICDs, and how often deactivation occurs.

III. Methods. National geographically weighted random survey of 900 hospices using a unique survey instrument.

IV. Results. A total of 416 hospices responded (54% of hospices with correct contact information). 79.6% of hospices reported that in the last year they admitted between 1 and 10 patients with an active ICD. Only 10.9% of hospices stated they had a policy which addressed deactivation. Hospices with a question on admission forms asking if a patient had an ICD were more likely to have a deactivation policy (OR, 4.6; 95% CI, 2.2-9.2). 58.3% of facilities reported that in the last year a hospice patient had been shocked while on hospice, and on average, 44.3% (SE, 2.9) of patients with ICDs have the shocking function deactivated. Hospices that have a formal policy addressing deactivation are more likely to have a higher mean percentage of patients have their devices deactivated compared to those without a policy (72.5% vs. 37.6%; P < .0001).

V. Conclusions. Hospices are admitting patients with active ICDs, and patients with these devices are being shocked at the end of life. Few hospices have formal systems in place to address deactivation, but those that do are more likely to have patients' devices deactivated.

VI. Implications for research, policy, or practice. Assuring that hospices have policies in place to address ICD deactivation may improve outcomes for patients. Elements to include in these policies will be addressed as part of this presentation, and sample policies will be distributed.

EMBARGOED FOR FRIDAY, March 27, 2:20 pm CT

Filming the Family: Evaluation of a Documentary Film Designed to Educate Physicians About the Experience of Family Caregivers of Patients with Life-Threatening Brain Tumors (412-C)
Lead author: Michael W. Rabow, MD, University of California San Francisco
(Rabow has disclosed no relevant financial relationships.)

1. Recognize the value of family caregivers in the care of patients with brain cancer.
2. Recognize the important role of physicians in supporting family caregivers.
3. Explain the benefit of documentary film in increasing clinician sensitivity to the needs of family caregivers.

I. Background. Neurosurgeons and other clinicians often pay little attention to the important role of family caregiving. Documentary film may be an effective way to increase empathy for family caregivers among clinicians caring for patients with brain cancer.

II. Research Objectives. To evaluate the efficacy of a documentary film about family caregiving to improve clinician sensitivity to the needs of family caregivers.

III. Methods. We produced a 48-minute documentary about the family caregivers of 4 patients with glioblastomas. Before and immediately after viewing the film, neurosurgery/oncology clinicians nationwide completed an evaluation of their awareness of and commitment to the care of family caregivers, with scores analyzed using paired t-tests. Viewers also completed an evaluation of the film using a 10-point Likert scale, with analysis by descriptive statistics.

IV. Results. For this study, the film was shown at 6 screenings nationwide in 2007 and 2008 with 49 viewers, including 32 (65.3%) neurosurgeons, neurosurgery residents, and medical students. The remaining viewers included nurses, social workers, and chaplains. Following the film, viewers were more likely to believe that family caregivers greatly impact the health of patients with brain cancers (P < .01) and that all families of patients with brain cancers should meet with a social worker (P < .01). After the viewing, respondents were less likely to believe that supporting family caregivers was primarily "someone else's job" (P = .01). Viewers strongly agreed that the film was an effective way to teach about family caregivers (mean Likert score = 8.75) and that all clinicians caring for patients with brain cancers should see the film (9.04).

V. Conclusions. A documentary film about family caregivers is an effective means to improve sensitivity among clinicians to the needs of family caregivers.

VI. Implications for research, policy, or practice. Using documentary film to increase sensitivity of physicians to the needs of family caregivers may be an effective way to support family caregivers and thus ultimately improve the care their loved ones receive at the end of life.


Teaching Family Carers About How to Support a Dying Relative at Home: Final Results from a Group Education Program (312-B)
Lead author: Peter L. Hudson, PhD RN, St. Vincent's & The University of Melbourne, Victoria, Australia
(Hudson has disclosed no relevant financial relationships.)

Objectives 1. Understand the importance of evidence-based family-centered palliative care. 2. Gain insight regarding the typical needs of family carers. 3. Learn about an effective strategy designed to prepare family carers for the role of supporting a dying relative.

I. Background. Despite the considerable body of evidence, which identifies that family carers of palliative care patients want much more support and guidance to prepare them for their role, there has been a shortage of evaluated interventions.

II. Research Objectives. A group education program (GEP) was developed to provide family carers with information, support, and strategies to assist them to care for a dying relative at home.

III. Methods. The GEP was conducted via three sessions at six palliative care services in regional and metropolitan Australia. Participants were required to complete self-report questionnaires: Time 1 was immediately before the program; Time 2 was immediately after the program; and Time 3 was 2 weeks after the program. The questionnaires included measures of Carer: Preparedness, Competence, Rewards, and Unmet Needs. Participants also completed a program evaluation form and the managers of the participating services were asked to report on their perceptions of the utility of the program.

IV. Results. Thirty-two education programs were conducted with a total of 156 family carers attending. The intervention had a statistically significant effect on preparedness, competence, rewards, and having needs met, from Time 1 to Time 2, which was maintained at Time 3. The overwhelming majority of family carers reported that the program was applicable, useful, and accessible. The utility of the program was also reinforced via positive feedback from the program facilitators and managers of the clinical sites.

V. Conclusions. The evaluation of the GEP for home-based carers demonstrated its effectiveness in meeting the needs of carers and also enhanced their competence and preparedness for caregiving. Carers also reported increased positive feelings related to their role.

VI. Implications for research, policy, or practice. Although further evaluation is recommended, from the feedback obtained, the program could be implemented into practice with a moderate level of additional resources.


Understanding Fatigue in Children with Advanced Cancer (314-B)
Lead author: Christina Ullrich, MD MPH, Dana-Farber Cancer Institute, Boston
(Ullrich has disclosed no relevant financial relationships.)

1. Describe the experience of fatigue in children with advanced cancer.
2. Identify physical and psychological factors associated with suffering from fatigue.
3. Identify care team factors related to suffering from fatigue.

I. Background. Fatigue is a common yet poorly understood symptom in children with cancer.

II. Research Objectives. To describe fatigue in children with advanced cancer and to identify factors associated with suffering from fatigue.

III. Methods. Retrospective, cross-sectional survey conducted from 1997 through 2001 of 144 parents of children who died of cancer, cared for at Dana-Farber Cancer Institute/Children's Hospital Boston or Children's Hospitals and Clinics, St. Paul/Minneapolis (response rate, 64%).

IV. Results. By parent report, 96% of children experienced fatigue in the last month of life and nearly 50% experienced significant suffering from it. Although no specific type of cancer or treatment modality was associated with fatigue, there was a trend toward an association between suffering from cancer-directed therapy and suffering from fatigue (P = .05). Suffering from fatigue was also associated with suffering from pain, dyspnea, anorexia, nausea/vomiting, diarrhea, anxiety, sadness, and fear (P < .05). In multivariate analyses of symptoms associated with fatigue, suffering from nausea/vomiting (OR = 3.73; CI, 1.22-12.76; P = .03), anorexia (OR = 8.67; CI, 2.03-37.06; P = .004), and fear (OR = 4.63; CI, 1.81-11.85; P = .001) remained independent factors associated with suffering from fatigue. Suffering from fatigue was additionally associated with the experience of side effects from pain or dyspnea treatment (P < .05). Finally, children who suffered from fatigue were cared for by primary oncologists with fewer years' experience (mean, 7.7 years; SD = 4.9), compared to oncologists of children who did not suffer from fatigue (mean, 9.9 years; SD = 6.0; P = .023). Among children who suffered from fatigue, 18% received fatigue-directed treatment, and this was unsuccessful in 79% of children.

V. Conclusions. Fatigue is a common and multifactorial source of suffering in children with cancer at the end of life. Palliation of this symptom is rarely attempted, and when attempted, is rarely successful.

VI. Implications for research, policy, or practice. Increased attention to factors associated with suffering from fatigue, provider education, and the study of interventions aimed at ameliorating fatigue are urgently needed.


Patients Receiving Pediatric Palliative Care Consultations: A Prospective Multi-Center Cohort Study (310-A)
Lead author: Chris Feudtner, PhD MD MPH, Children's Hospital of Philadelphia
(Feudtner has disclosed no relevant financial relationships.)

1. Describe the demographic and clinical characteristics of pediatric patients receiving palliative care consultations.
2. Explore the implications of the diversity of patients served by hospital-based pediatric palliative care consultation teams.
3. Examine the advantages and challenges of conducting multi-center clinical studies.

I. Background. While the number of hospital-based pediatric palliative care (PPC) teams is growing, scant information exists regarding patients referred for PPC consultations.

II. Research Objectives. To describe the demographic and clinical characteristics and outcomes of patients who received PPC consultations.

III. Methods. Prospective observational cohort study conducted at 6 sites in the United States and Canada, each with an established hospital-based PPC team. All patients served by the teams from January to March 2008 were eligible for enrollment, and subjects were observed for 3 months. Data abstracted from clinical records were entered into a common database.

IV. Results. 511 new (35.2%) or established (64.8%) patients received care from the 6 programs during the 3-month enrollment interval. 54.2% were male, 69.5% were identified as white, 7% as Hispanic, and 56.8% had public insurance. Regarding age, 4.7% were younger than one month, 12.5% were 1-11 months, 37.2% were 1-9 years, 30.1% were 10-18 years, and 15.5% were 19 years or older. 59.1% lived with both parents, and 72.4% had siblings. The predominant primary clinical conditions were genetic/ congenital (40.9%), neuromuscular static (24.3%) or progressive (18.2%), respiratory (12.9%), and gastrointestinal (10.0%), with cancers (19.7%) classified as hematologic (7.0%), solid tumor (7.0%), or brain tumor (5.7%). Most patients had chronic utilization of some form of medical technology, with gastrostomy tubes (48.9%) being most prevalent. At the time of consultation, the most common symptom was cognitive impairment (47.2%); somatic (21.9%), visceral (11.5%), or neuropathic pain (9.6%) affected 30.9% of the cohort. Patients were receiving many medications (mean 9.1). During 3-month follow-up, 18% of the cohort died (pending final follow-up data); the median time from enrollment to death was 23.5 days.

V. Conclusions. PPC teams serve a diverse cohort of children and young adults.

VI. Implications for research, policy, or practice. PPC teams should be prepared to manage a diverse patient population.
AAHPM's membership includes more than 3,600 physicians and other medical professionals dedicated to excellence in hospice and palliative medicine and the prevention and relief of patient and family suffering. Since 1988, AAHPM has supported hospice and palliative medicine through advancement of clinical practice standards, fostering research, providing education, and through public policy advocacy. For more information about the 2009 Annual Assembly or membership in the Academy, contact AAHPM at 847/375-4712 or visit the Web site at

Credentialed media representatives are welcome in the press room (room #15) at the Austin Convention Center. Contact Mary Louise Carr at 847/375-3688 or email to register for the meeting in advance.

American Academy of Hospice and Palliative Medicine

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