Frequently Asked Questions

What is the status of end-of-life care in NJ today?

Today in NJ, patients approaching the end of life are treated with more aggressive medical care than any other state in the US.1 This type of care is often unwanted and burdensome to patients and accounts for costs that are 20% above the national average.1

How has this changed over time?

Among the total number of Medicare beneficiaries in 2015 (approximately 1.5 million people), there was an increase in ICU care in the last 30 days of life compared to 2005.2 Hospice use also increased from 2005 to 2009, however, hospice use was for 3 days or less and was often preceded by an ICU stay.3 Furthermore, for patients with chronic illnesses, aggressive interventions were typically associated with shorter life expectancy, potentially due to the risks associated with hospitalization.1

Why is there a gap between what patients want and the care they receive in the final stages of life?

This is clearly a complicated issue with many factors involved, however, the most critical include: a lack of awareness about advance care planning; poor communication between patients/families and health care providers; as well as culturally distinct issues.4

How may people actually have some type of end-of-life care plan?

In 2001, only 16% of NJ adults had some type of advance directive compared to 28% of adults in the US.4 This varies by age, with one-third to nearly half of older residents (over 65) being likely to have some type of advance care documents.4

Are there racial or ethnic differences in advance care planning?

Yes, in NJ there are significant disparities in who has advance care planning.4 A study found 21% of Caucasian patients reported having an advance directive compared to approximately 8% of African-American patients and 3%-4% of Hispanic/Latino or Asian patients.4 These racial/ethnic differences are also related to immigration status.4 The number of patients with an advance directive is only 6% for non-US born NJ residents and it’s less than 2% for adults in households where English is not the primary language.4

Has NJ created a tool to encourage advance care planning?

One of the most significant steps taken to address advance care planning occurred in 2011, when NJ began use of the POLST form (Practitioner’s Orders for Life Sustaining Treatment).5,6 This form enables seriously ill patients to document their preferences for life-sustaining treatment and becomes part of a patient’s medical record following them from one health care setting to another (e.g., hospital, nursing home, hospice).5,6 However, despite efforts to promote the use of the POLST form, completion rates are relatively low.5,6 Various efforts are underway to increase the use of POLST forms—it has been demonstrated that a multi-disciplinary approach involving community leaders helps encourage use.5,6

How about federal programs to help address the issue?

Reimbursement for advance care planning discussions was made available for the first time in 2016.7 Although this is an important step, many physicians do not have the time or training to engage in advance care planning discussions.7 Not surprisingly, the total number of physicians billing for these services is relatively small but growing.5 By the end of 2016, approximately 1% of the Medicare population specifically sought advance care planning appointments which typically lasted for 30 minutes.7


1. Dartmouth Atlas of Healthcare from 2008 – 2014.
2. Kaiser Family Foundation, 2015 (Total population 8.9 million
3. JAMA, Feb. 6, 2013
4. Rutgers Center for State Health Policy, NJ Family Health Survey, 2001
5. Pathways to POLST Registry Development: Lessons Learned.
6. California Healthcare Foundation; Information in a Heartbeat: Readiness Assessment for Establishing a POLST Registry in California.
7. Centers for Medicare and Medicaid Services (CMS) National Survey, April 2016.

4Step iCare Plan

An Individualized End of Life Care Plan

Our 4Step iCare Plan is a simple, 4-step approach that helps patients, families, and healthcare providers navigate through challenging medical decisions.
Learn more with our video series and helpful tools

The NJ POLST Form

A NJ POLST form will inform your healthcare providers about the types of medical treatment you’d like to receive.
Watch our video series about the NJ POLST
Learn more and download a NJ POLST form

Get Involved!

 As an agent of change. Join the Goals of Care Coalition of New Jersey to help improve end of life care for patients and families.
As a supporter of our efforts. We depend on the generosity of our donors to provide critical information to patients and families—this information is provided at no cost when it’s needed most.

GOCC Resources:

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NJ POLST Form Videos and Documents
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NJ POLST Form Videos and Documents

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