GOCCNJ is dedicated to advancing research that increases access to palliative care and improves care for people with serious illness. Future research priorities include:
- Enhancing patient and caregiver understanding of palliative care
- Identifying barriers to timely referrals
- Improving communication about the benefits of palliative care
If you are interested in supporting GOCCNJ’s research efforts, please contact us.
VIEW RESEARCH
Research Collaboration with Bloustein School of Planning & Public Policy
GOCCNJ recently partnered with Masters of Public Policy students at the Bloustein School of Planning & Public Policy at Rutgers University to conduct a study examining how patients and caregivers in New Jersey understand, perceive, and experience palliative care. Their findings will help inform equitable implementation of the new Medicaid community-based palliative care benefit by helping patients access high-quality palliative care and supporting providers in delivering this essential service.
Current Research Projects:
Palliative Care in NJ: Gaps and Opportunities to Improve Access
Grant provided from the New Jersey Commission on Cancer Research (NJCCR)
This research project will catalogue the prevalence of inpatient and community-based palliative care services across the state and quantify the gaps in access for patients with cancer.
Brief Description:
Palliative care is specialized medical care that provides patients with relief from the symptoms, pain, and stress that often occur with serious illness such as cancer. Unlike hospice care, palliative care is appropriate at any stage of a serious illness and can be provided alongside curative treatment.
Palliative care significantly improves quality of life for patients living with cancer and has been proven to lower costs that are often burdensome for patients and their families. Unfortunately, despite the recent increase of inpatient palliative care programs in NJ hospitals, as noted in the 2019 State-by-State Report Card on Access to Palliative Care published by the Center to Advance Palliative Care (CAPC), information about the composition of palliative care programs in our state is not well understood, and use of these services for patients with cancer in NJ remains low.
To identify where, how, and to whom services are being provided, and to better understand and quantify the gaps in access to palliative care for patients with cancer, our research aims to answer the following questions:
- Where are palliative care services being provided across the state?
- Are facilities/health systems providing services using team-based approaches for care or a single provider?
- Are all patients being offered palliative care services or just a specific sub-set of patients?
- How does patient need for and access to palliative care services differ in underserved populations and communities in NJ?
- What needs to be done to increase access to palliative care services for all cancer patients in NJ?
Our multi-phase research plan will result in a registry and directory of palliative care providers and agencies that deliver palliative care services across the inpatient, outpatient, and home settings throughout NJ. This information will allow patients, families, and clinicians to understand availability of palliative care teams in their localities.
The overall goal of this research project is to develop a clearer picture of palliative care services across the state to identify gaps and ultimately address challenges and barriers that are preventing New Jerseyeans with cancer from receiving the best possible care.
REPORT
SUMMARY & RECOMMENDATIONS
Past Research Projects
Health Disparities in End-of-Life Care in NJ
Grant provided from The Robert Wood Johnson Foundation
Brief Description:
Most Americans nearing death don’t have access to palliative services and good end-of-life (EOL) care, but for underserved populations such as African-Americans, Hispanics and Asians, the gap is even wider. EOL care decisions are difficult for most families for a variety of reasons, including poor advance planning, complex family communications and low health literacy. For African-Americans, Hispanics and Asians, there are additional challenges such as lack of access to information and language barriers. Apart from access, health literacy and language issues, cultural differences have the potential to negatively impact the care that minority patients receive at the end of life.
With a grant from Robert Wood Johnson Foundation, GOCCNJ held Medical Grand Rounds at the largest hospital in each target county where the majority of residents are of African-American, Hispanic or Asian descent and used various assessments to measure improved knowledge, skills and intent to change behavior.
Click here for a summary of the research and key findings.
Video Decision Support Tool for Completion of Physicians Orders for Life Sustaining Treatment (POLST): An Opportunity to Improve Advance Care Planning
Grant provided by Your CarePlan, LLC.
Brief Description:
Improving communication around advance care planning (ACP) for patients with advanced illness nearing the end of life is a high priority in our current medical environment. We investigated whether use of a video-guided tool may help facilitate completion of a POLST (Physician Orders for Life Sustaining Treatment) form for patients with advanced illness.
Our research found that patients and their decision makers who used the tool were far more likely to complete all sections of the POLST form, more likely to elect a less aggressive level of care, limited or symptom treatment vs. full treatment, more likely to elect Do Not Hospitalize (DNH), and more likely to refuse tube feeding compared to the control arm. The work suggests that a video-guided POLST completion tool may augment ACP and better align personal goals of care with available therapies.
Click here for a summary of the research and key findings. To learn more about Your CarePlan, click here.
GOCCNJ Your CarePlan™
Your CarePlan is a video-guided program that helps healthcare providers (HCPs) complete POLST forms with eligible patients in long-term care facilities, hospitals, and community practices. Guided scripts, gentle prompts and short, straight-forward informational videos simplify the conversation about goals of care and choices for treatment and facilitate POLST documentation. As each section is completed, the answers automatically populate a POLST form which can then be printed for the patient and authorized HCP to sign. Utilization of Your CarePlan improves patient health literacy and ensures informed consent.
Real world evidence (RWE) obtained from 326 provider and patient POLST conversations using Your CarePlan resulted in:
- 36% of patients electing DO NOT HOSPITALIZE (DNH)1
- 98% of patients electing DO NOT RESUSCITATE (DNR)1
- 98% of patients electing DO NOT INTUBATE (DNI)1
A recent study found that when HCPs used Your CarePlan, they achieved high rates of:
- Completion2
- Less Aggressive Care2
- Nutritional Preferences2
For more information, visit Your CarePlan.
1. Data on File. GOCCNJ; RWE Sept. 17, 2018 – March 11, 2020.
2. Data on File. GOCCNJ; Pilot Study, Jan. 2017 – Dec. 2017.