In this update

Upcoming PoPCRN Convocation, to be held in conjunction with
2009 NHPCO conference

We are pleased to announce that a PoPCRN convocation will be held this September 23, 2009, in Denver Colorado. The convocation will take place on the Wednesday before the 2009 NHPCO conference (see below for more information), at the Hyatt Regency Denver. Preliminary schedule is as follows:

12:45 PM - food available (heavy snacks and drinks)
1 - 1:30 PM - welcome and introductions
1:30 - 2:45 PM – sharing of prior PoPCRN-based study results and discussion of implications for practice
2:45 - 3:00 PM - break
3:00 - 3:45 PM - applying study results to practice
3:45 - 4:45 PM - upcoming PoPCRN studies
4:30 PM - food available for break
4:45 - 5:00 PM – break with heavy appetizers and drinks
5:00 - 6:00 PM - new research ideas and priorities/ wrap-up

We are very excited about the convocation and hope to see many of you there. We would like to have an idea of who all will be attending. If you plan to attend, please provide the requested information below. Space is limited. Registration will be accepted on a first come, first served basis. Registrations accepted until September 17, 2009.

NHPCO’s 10th Clinical Team Conference
Facility-Based Hospice Forum, Scientific Symposium, and Pediatric Intensive
Soaring to New Heights in Interdisciplinary Care

The 10th Clinical Team Conference and related educational offerings will provide an opportunity for hospice and palliative care providers and professionals to learn about programs and professionals who are “soaring to new heights” in exceptional care, innovative service, increased access, community engagement, quality assessment, performance improvement, interdisciplinary team function and related areas of excellence.

Main Conference Dates: September 24-26, 2009
Preconference Seminar Dates: September 22-23, 2009

Click here for more information.

PoPCRN: Who we are, recent growth, and YOUR interests

Since January of 2008, we have had
- 43 new members join from 28 states (and 1 from Denmark)
- 31 of you are from clinical organizations, 7 from non-clinical organizations, and 5 unaffiliated with an organization

We thank you for sharing your palliative care research interests with us when joining our network. Below is what some of you had to say:
- cultural and religious aspects of palliative care
- pediatric palliative care programs
- medication education for patients and families
- information about patients discharged from hospice
- multi-cultural advance care planning and reasons for limited participation in making those decisions
- outcome scales measuring caregiver stress
- overall knowledge level / clinical competency of hospice nurses and the success of the organization
- pediatric and adolescent issues
- spirituality at end of life and existential pain
- standardization of palliative care instruments
- translating research & best practice into care
- falls

Study of Implantable Cardioverter Defibrillators (ICDs) in Hospice
Nathan Goldstein, MD

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.

Research Objectives: To determine what systems hospices have to assure that the role of the ICD is addressed, the frequency with which patients receive shocks, and how often deactivation occurs.

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

Results: A total of 416 hospices responded, a completion rate of 54% after accounting for facilities with incorrect contact information or which no longer operated as a hospice. 79.6% of hospices reported that in the last year they admitted between 1-10 patients with an active ICD. Only 11% of hospices stated they had a policy which addressed deactivation. There was a relationship between having a question on admission forms asking if a patient had an ICD and having a deactivation policy (OR 4.6, 95% CI 2.2-9.2). 58.3% of facilities reported that in the last year a patient had been shocked while on hospice, and on average, 44.3% (SE 2.9) of patients have the shocking function deactivated. Facilities which have a formal policy addressing deactivation are more likely to have a higher mean percentage of patients have their devices deactivated as compared to hospices who do not have a policy (72.5% vs. 37.6%, p<.0001).

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. Implications: Assuring that hospices have policies in place to address ICD deactivation may improve outcomes for patients. Dr. Goldstein is proposing a project with PoPCRN to create a nursing-based educational intervention to improve communication about the management of ICDs for patients on hospice.

For more information contact Dr. Goldstein at nathan.goldstein@mssm.edu.

Hospice-Academic Partnership to Improve Care for Vulnerable Populations at the End of Life

Funded by the CCTSI Partnership of Academicians and Communities for Translation (PACT)
NIH/NCRR Colorado CTSI Grant Number UL1 RR025780

'Hospice-Academic Partnership to Improve Care for Vulnerable Populations at the End of Life,' a partnership between PoPCRN and The Denver Hospice, seeks to create a collegial climate for community-based research that lays the foundation for future funded translational research.The aims of this project are to formalize a community-based participatory research (CBPR) process to address gaps in the evidence base related to care at the end of life.

The “community” is defined as staff, physicians, volunteers, patients and family caregivers, and community board members of a single hospice, who all share a common interest and relevancy during the period of time defined by the end of life. Defining the community as a single hospice partner provides the opportunity for in-depth exploration of these issues and development of a model that can then be refined, tested and disseminated.  

We will be presenting on our community-academic partnership at the NHPCO meeting this September 25, 2009.

For questions, please contact Dr. Jean Kutner.

Support by Telephone for Caregivers in Hospice
The CaLL Project: Caregiver Life Line

Principal Investigators: Kristin Kilbourn, PhD, Psychology Department, UC Denver & Jean Kutner, MD, MSPH, Division of General Internal Medicine, University of Colorado School of Medicine

After months of pilot work testing the telephone-based counseling program for caregivers in hospice, an R01 for a larger, randomized trial was submitted in June 2009.

If funded, this three-arm randomized clinical trial will: randomize caregivers of home hospice patients to usual care, an attention and time control, and a telephone-based counseling coping and stress management skill training intervention. Participating caregivers will be assessed at four time points: 1) time of enrollment, 2) completion of intervention, attention control or three months after enrollment, 3) six months after the second assessment, and 4) twelve months after the second assessment.

This caregiver support intervention will consist of 10 -12 telephone calls delivered on average of once a week over the course of several months. The content and approach will be based on the Transactional Model of Stress and Coping. Telephone sessions will occur throughout the caregiving experience and following the death of the patient. Each telephone session will address a different topics associated with coping and stress management. Topics will include: introduction to stress management, mind body connection, how thoughts impact emotions, communication, self care, coping skills training, social support, problem solving skills, grief and loss, moving forward, and wellness for life.

We should know if this project will be funded this Fall. Stay tuned!!