Quality end-of-life caring at issue

How do you envision your last days? If you’re like most of us, you see yourself free of pain, surrounded by loved ones, at home or at a place that feels like home.

The reality is often quite different. In fact, many of us die only after great suffering, with unmanaged symptoms, in unsupportive environments. This is an American phenomenon, yet particularly acute in Maine.

In 2001, a national coalition of experts in palliative care and pain management ranked each state according to its present handling of end-of-life care. Maine did well in a few areas, garnering, for instance, an “A” in “advance care planning.” But we were awarded an “E” in three critical categories: “utilization of Medicare hospice,” “hospitals reporting palliative care services” and “hospitals reporting hospice programs.”

Hospice programs, delivering a unique philosophy of care to terminally ill patients and their families through a wide variety of services, have existed in Maine since 1976 – but according to a 1998 study, 50 percent of all Mainers know little or nothing about them. Even though many people have the option of receiving hospice services paid for my Medicare, these services still remain significantly unknown and underused.

Now that may change. The Maine Health Access Foundation recently announced two end-of-life care grants as part of its 2003 major grants round. Medical Care Development, Inc. (MCD) and the Maine Hospice Council, the two recipients, will each be working towards increasing Mainers’ awareness and use of hospice.

For its part, MCD will soon launch an effort to increase the number of people who take advantage of Medicare hospice services. “Only 9 percent of Maine residents facing the end of their lives receive the many emotional, financial, and logistical benefits available to them and their families through hospice,” noted John LaCasse, president of MCD. “That puts us next to last in the country. We are looking forward to working with providers to develop better methods for enabling patients to benefit from hospice.”

The project will employ strategies such as increasing the role of social workers and educating physicians and patients about the benefits of hospice.

Richard Wexler, MCD’s Medical Director points out that, “In truth, many physicians, like their patients, are uncomfortable talking about death and dying. We’re also uncomfortable with the Medicare benefit structure, which requires us to predict that a patient has less than six months to live. We can certainly do better.”

The second grant, awarded to the Maine Hospice Council Inc. (MHC), will help expand the ambitious agenda that the Council has been working on recently. In particular, the grant will help to develop the Maine Center for End-of-Life Care.

The center was created by statute as an unfunded mandate and subsequently awarded to MHC by the Bureau of Health. Its mission is to focus on areas of research and baseline data collection, community engagement, advocacy, clinical practice and professional education. Once baseline data is available it will be possible to monitor Maine’s progress with regard to end-of-life care.

MHC Vice President David Madore expressed his enthusiasm about the partnership with MeHAF, saying “The development of the Center is one more step toward creating a solid infrastructure for end-of-life care in Maine.”

While much work has been done in Maine over the past several years in this arena, a great deal more remains to be done, in order to create the kind of socially responsive environment in end-of-life care that all Mainers deserve. It will take an expanded public-private effort to effect the changes in attitudes, pain and symptom management, clinical competency, policy and regulation that are needed to create universal access to a seamless delivery system.

Hospice is a high-quality, value- added, cost-effective delivery model, one that will become more important as the percentage of senior citizens in Maine’s population grows. With a fifty-percent increase in the over-65 population projected for Maine in the next 25 years and a 40-percent increase in the over-85 population by 2010, research and planning such as these two grants encourage is sorely needed.

Today, with so many advances in health care and patient treatment, quality end-of-life caring is still an issue. A comfortable, dignified death, something we all wish for ourselves, remains an option that few take advantage of or even know how to achieve.

Hubert Humphrey has often been quoted as saying the moral test of a society is how it treats its most vulnerable citizens. Those who are dying are perhaps our most vulnerable. Now, we can begin to work toward easing their pain and giving them – and, eventually, all of us – the comfort and dignity we deserve.

Kandyce Powell, RN, MSN is executive director of Maine Hospice Council. Kate Perkins, MPA is project director of Medical Care Development.