Consumer Protection & End-of-Life Care
Opening Remarks by Stephen G. Rowe, State of Maine Attorney General
The following are excerpts from Attorney General Steven Rowe’s opening remarks.
The Office of the AG is proud to be a co-sponsor of this “Listening Conference” with the Maine Hospice Council. I want to thank Kandyce Powell and the Planning Committee for all the work they did to make this conference a success.
Dying is a fact of life. Just as sure as we were born, we will die. We all know loved ones who have died. Most of us, I expect, know loved ones who have died with pain. We know from statistics that many of us will experience pain associated with dying.
You may wonder why my office is involved with this issue. The answer is quite simple. One of the key missions of the Office of the Attorney General is to protect consumers, including health care consumers. And end-of-life care is the ultimate health care consumer protection issue.
At the end of the national listening conferences, a group of AGs met to discuss what we had learned. We found that the conferences confirmed what we had heard. When asked about their expectations at the end-of-life, most people expressed the same desires: to receive effective pain management, to be surrounded by family and friends and to avoid extraordinary medical intervention. We also learned some other things.
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We learned that end-of-life care in the United States is mediocre at best.
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We learned that most Americans know nothing about hospice and palliative care.
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We learned that 90% of Americans do not know that hospice is covered by Medicare. And that 75% do not know that hospice can be provided at home.
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We learned that almost all pain can be safely and effectively treated to ensure an individual’s comfort, yet almost 50% of patients report unrelieved pain.
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We learned that although some of our state legislatures and professional licensing boards are beginning to adopt policies to encourage better pain management, to clarify the role of opiod analgesics, and to address physicians’ fears of being investigated for inappropriate prescribing, there is still a significant gap between policy and practice.
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We learned from certain experts (including physicians and nurses) that deficits exist in educational requirements in medical, nursing, social work and pharmacy schools for end-of-life health care. We also learned that statistical studies reflect a lack of education as a major factor contributing to substandard care near the end-of-life.
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We learned that there is work to do to educate people about the importance of having advance health care directives in place. And that there have been issues regarding honoring these directives, even when they do exist.
I think it would be fair to say that the most important thing we learned is that there is a gulf between the vision that citizens have about end-of-life care and the harsh reality that too often confronts patients and caregivers at a time when they are most vulnerable.
Do these national findings reflect what is happening in Maine? I believe they do.
Over 80% of Mainers say they would prefer to die at home, yet only around 25% do. Also, half of dying patients in Maine report being in pain. Public awareness of hospice services and the benefits of such services is extremely low in our State.
Although we have some seen a slight increase in Maine’s Medicare hospice utilization rate over the past three years, we still have one of the lowest rates in the nation. The national rate is about 25%. Our state rate is about 14%. It may surprise you to know that hospice utilization rate is lowest in some urban areas where there are numerous health care facilities.
There have been improvements here in Maine. I certainly want to acknowledge that. A new End-of-life Care law was enacted in Maine which increased the Medicaid hospice rates and mandated comprehensive hospice coverage in private insurance policies for all non-ERISA employers. It also provided for an annual budget appropriation to be divided among Maine’s voluntary hospice programs.
Importantly, the new law also mandated creation of the Maine Center for End-of-life Care and required basic research on the current status of end-of-life care in Maine. The new law’s main benefit – beyond extending hospice coverage – has been to expand public awareness about end-of-life care for policymakers and consumers.
To continue to expand public awareness and drawing on the experience of the national listening conferences, Kandyce Powell of the Maine Hospice Council and I thought it would be beneficial to have an end-of-life listening conference right here in Maine. We believed it necessary to better understand the barriers and opportunities to quality end-of-life health care in our State.
Attorney General, Steven Rowe