The Eagleton Center for Public Interest Polling (ECPIP), home of the Rutgers-Eagleton Poll, is excited to announce its first collaboration with the New Jersey Health Care Quality Institute (NJHCQI) – a poll on end-of-life care preparation and awareness prior to National Health Care Decisions Day this Saturday, April 16.
Much like some of NJHCQI’s past polling, we once again see that New Jerseyans are thinking and talking about end-of-life plans, but they continue to take little action on them. Few have written their preferences down somewhere, and few know about the variety of options available for end-of-life care and treatment. We of course see some important demographic differences in preparation and awareness – age being the biggest factor – but these latest results show us that there is still much educating to be done among the entire public on this issue.
END-OF-LIFE CARE IN NEW JERSEY: MAJORITY HAS THOUGHT ABOUT, DISCUSSED PLANS BUT FAR FEWER HAVE WRITTEN A LIVING WILL
Limited awareness of advance care planning documents, palliative care; more widespread knowledge of hospice
NEW BRUNSWICK, N.J. – In advance of National Health Care Decisions Day on April 16, more than six in 10 New Jerseyans say they are mostly comfortable with getting older and have even thought about and discussed their wishes for medical treatment near the end of their life. What residents are actually doing to prepare for this moment, and how familiar they are with important end-of-life care options, is another story, however.
In the inaugural Rutgers-Eagleton/New Jersey Health Care Quality Institute Health Matters Poll, 61 percent of New Jerseyans say they are comfortable thinking about the idea of getting older; 19 percent are not comfortable with it but still think about it, and 17 percent would rather not think about it at all.
A similarly solid majority has thought about their wishes for end-of-life care (33 percent have given some thought, another 33 percent a great deal), and 62 percent have had a conversation with someone about it in the event they become terminally ill or are suffering from a great deal of pain.
But six in 10 New Jerseyans have not put their wishes in writing. And while most residents (78 percent) are familiar with hospice care and half (50 percent) know of the New Jersey State Advance Directive, far fewer recognize other crucial end-of-life care options like palliative care (45 percent), the living will advance directive “Five Wishes” (24 percent), or the Physician Orders for Life-Sustaining Treatment form known as POLST (27 percent).
“People care and think about end-of-life plans, but they are not taking action and are mostly unaware of what opportunities are available,” said Linda Schwimmer, president and CEO of the New Jersey Health Care Quality Institute. “This issue is critical to New Jersey, a state where people are more likely to die in a health care facility and less likely to use hospice services than residents of almost any other state. New Jersey has among the highest use of medical interventions in the last six months of life.”
Results are from a statewide poll of 886 adults contacted by live callers on both landlines and cell phones from April 1 to 8, 2016. The sample has a margin of error of +/-3.7 percentage points. Interviews were done in English and, when requested, Spanish.
Age biggest factor in knowledge and action
As expected, age plays the most significant role in knowledge of and behaviors related to end-of-life care. While there are few differences among age groups in their feelings about getting older, actions like thinking about, talking about, and actually writing down plans for medical treatment in the event of terminal illness increase with age.
Those 65 years and older are more likely to have done all three: 78 percent have given it at least some thought, 80 percent have had a conversation about it with someone, and 65 percent have written their wishes down.
Senior residents also know the options available to them. Almost all know about hospice care (56 percent are very familiar, 33 percent somewhat), and a majority of this group is familiar with palliative care (28 percent very, 29 percent somewhat). Likewise, 72 percent are familiar with the New Jersey State Advance Directive. Yet even this group is unaware of Five Wishes or POLST; just three in 10 senior citizens have heard of either advance care planning document.
Large majorities of 50 to 64 year olds have also thought and talked about their own end-of-life care (74 percent and 68 percent, respectively), but just under half have actually put down anything in writing. This group echoes the most senior residents in their awareness of what options are available.
Middle-aged residents are less prepared than their elders, especially when it comes to talking about and writing down their wishes (at 55 percent and 26 percent, respectively). A majority of 30 to 49 year olds know about hospice care, but large numbers are unfamiliar with palliative care or any advance care planning documents.
End-of-life care is far from the minds of millennials. Under half have given it much thought (just 16 percent say they have thought about it a great deal) or have talked with someone about their plans (45 percent). Only 17 percent have actually written something down. Sixty-three percent of 18 to 29 year olds are at least somewhat familiar with hospice, but few know about palliative care or other options.
Race, gender, and other key demographics impact preparation and awareness
There are large racial disparities when it comes to end-of-life care. White residents are more likely than non-white residents to think about (70 percent to 61 percent) and talk about (73 percent to 46 percent) any end-of-life medical treatment plans. White residents are also more than twice as likely as non-white residents to have written something down – 49 percent to 23 percent – and are also more familiar with the various related actions and options.
As for differences by gender, women are more likely than men, by double digits, to have had a conversation with someone about their end–of-life care wishes and to be familiar with hospice and palliative care. Women are also slightly more familiar with POLST, though a majority of both genders is unaware of this document.
Marital status also has an impact: married residents have done more and know more about end-of-life care than those not currently married.
Income disparities arise with regard to talking about and writing down wishes for treatment, as well as familiarity with hospice and palliative care; those in the most affluent households are the most prepared and the most aware. Education plays a similar role.
There are even regional differences in preparation and awareness. Residents in the southern portion of the state near Philadelphia, an area that has a slightly larger portion of older residents than any other region, are more likely to have thought about, talked about, and written down end-of-life care plans, as well as to know about hospice, palliative care, and the state advance directive.
“We find a lot of demographic disparities beyond the obvious factor of age when it comes to end-of-life care preparation and awareness,” said Ashley Koning, assistant director of the Eagleton Center for Public Interest Polling at Rutgers University. “Accumulating this type of knowledge requires experiences and resources that some groups may have better access to than others. Women are typically the caretakers of their elders, those who are married may be sharing plans with their spouse, and residents of higher socioeconomic status may have better access to information and care – all of which can lead to the differences we see here.”
Those more prepared are more familiar with options
Planning, action, and knowledge regarding end-of-life care go hand in hand. Those who say they are comfortable with getting older are more likely to have discussed and written down plans and also more likely to be familiar with advance care planning documents.
Residents who have either thought about, talked about, or written down medical treatment preferences are all more likely to have also done the remaining two – as well as more likely to be aware of hospice care, palliative care, the state advance directive, Five Wishes, and POLST.
In turn, those who have greater awareness of end-of-life care options and actions that should be taken are more likely to have already started preparing their own end-of-life care plans.
Having a “Conversation of a Lifetime”
The release of these results is in conjunction with a broader program established by the New Jersey Health Care Quality Institute called “Conversation of a Lifetime,” part of the Institute’s Mayors Wellness Campaign in partnership with the New Jersey State League of Municipalities. The program, funded by The Horizon Foundation of New Jersey, aims to change the culture around end-of-life conversations and advance care planning.
As part of the program, community members in Tenafly, Princeton, and Gloucester Township have gathered in libraries, community centers, parks and places of worship to engage with one another and to listen to speakers explain how they can make sure that their wishes are followed in their final days.
“People do not have to wait for their doctors to initiate these conversations,” said Janan Dave, Director of Community Health for the Quality Institute. “‘Conversation of a Lifetime’ wants to encourage communities to promote discussion of end-of-life issues in town halls and dinner tables. Most people say they want to die at home, surrounded by loved ones, yet so many people in New Jersey actually die in a hospital. We want people to express their wishes and for those wishes to be followed – whatever those wishes may be.”
About the New Jersey Health Care Quality Institute
The New Jersey Health Care Quality Institute is the only independent, nonpartisan, multi-stakeholder advocate for health care quality in New Jersey. The Quality Institute’s mission is to undertake projects and promote system changes that ensure that quality, safety, accountability and cost-containment are closely linked to the delivery of health care services in New Jersey.