State coalition explores ways to provide better end-of-life care

RWJF grantees begin tearing down the barriers to hospice care

Too many people die without the benefit of hospice or palliative care. This is a reality that hospices are all too familiar with. Now that they have crossed over into a new millennium, has end-of-life care improved significantly?

The short answer, unfortunately, is "no," but end-of-life care advocates say more is being done in hopes of changing attitudes toward hospice and palliative care. For years, experts have complained that lack of training in palliative care among physicians and nurses has contributed largely to the fact that only one in three people who could benefit from hospice care actually do.

Consumers have done little to push physicians and nurses toward better end-of-life care. Without demand for hospice or palliative care, improved access and care have been slow in coming.

But recently, 23 coalitions of providers, insurers, and academics have undertaken efforts to reverse the trends that have been a hindrance to improved end-of-life care. Sponsored by the Robert Wood Johnson Foundation’s (RWJF) grant program, Community-State Partnership to Improve End-of-Life Care, these coalitions hope to draw a road map that provides a clear route to better end-of-life care.

One of those coalitions, Kentuckians for Compassionate Care, a partnership of 50 agencies and individuals, received a three-year grant of more than $375,000 in January to coordinate a communitywide effort to engage senior groups, doctors, clergy, and policy leaders in efforts to improve care for all seriously ill and dying people in their state.

"By the end of the grant, we hope to have begun an avenue where every individual in the state of Kentucky has access to a good death," says Cynthia Ellis Keeney, RN, project director.

The program, Journey’s End — A Kentucky Partnership for End of Life Care, has laid out a plan it hopes will raise awareness among health care providers, state lawmakers, and consumers, all of whom play a pivotal roles in improving care for those with chronic pain and terminal illness. The centerpiece of the project is a campaign to increase awareness among policy-makers, the public, and present and future physicians and nurses about the problems and barriers associated with the planning and delivery of quality end-of-life care.

To begin, investigators sought to identify barriers to good end-of-life care. Then, they developed programs designed to address each barrier. Among them are:

lack of palliative care education among physicians and nurses currently in school;

lack of palliative care training among physicians and nurses currently in the field;

lack of consumer demand for better of end-of life care;

reimbursement methods that encourage inappropriate curative methods above appropriate palliative care.

Reform for the dying

In January, project officials invited elected officials to a reception marking the coalition’s grant acceptance. They used the opportunity to begin its campaign to educate elected officials.

Lawmakers were told how today’s medical model fails to meet the needs of dying patients and their families. Left alone, the problem will only escalate as the population ages. The bottom line, elected officials were told: There needs to be broad-based policy reform to improve care of the dying.

They cited the following actions that should be taken:

Remove barriers to providing pain control, such as those that prompt physicians’ fear of prosecution for using narcotics to treat pain.

Require state-supported medical and nursing schools to include palliative care in their mandatory curriculum.

Support mechanisms to facilitate carrying out patients’ wishes outlined in advance directive documents across a variety of health settings.

Identify access to quality end-of-life care as a health care priority in their state.

Encourage the development of improved pain management assessment and treatment policies in nursing homes.

In addition, resource materials, briefs, and issue papers describing project activities will be presented to state legislative members, state officials, health work force regulators, health volunteers, and project partners.

Certainly, one of the linchpins to improving pain management and end-of-life care will be changing the attitudes of physicians and nurses who were trained in an era when death represented the enemy. Teaching physicians and nurses that comfort care is part of a patient’s complete treatment has been slow to take root.

"No one wants to own up to the fact that we are all going to die," says Lisa Spoden, chairwoman of the Kentuckians for Compassionate Care. Spoden is also chairwoman of the Arlington, VA-based National Hospice Organization’s Managed Care Task Force.

"All of us can benefit from more education," adds Carla Hermann, PhD, RN, associate professor at the University of Louisville’s School of Nursing and a co-investigator for the partnership. "We know patients have a need for palliative care from the point of diagnosis."

To encourage physician behavior, Journey’s End will implement a number of initiatives aimed at educating physicians and nurses, both in training schools and in the field. They include:

A peer resource network and toll-free Helpline. Helpline will provide telephone consultation to physicians who are having difficulty managing pain and other symptoms in their terminally ill patients.

Education for Physicians on End-of-Life Care (EPEC). An American Medical Association-developed training project designed to teach palliative care to physicians who, in turn, train their colleagues. EPEC training conferences will be offered to multidisciplinary teams of physicians and other support professionals (nurses, social workers, pharmacists, and clergy) at various sites around the state. (See related story on p. 28.)

Long-term care facility improvement. The partnership plans to initiate pilot projects in six long-term care facilities to improve staff education through inservice training, encourage resident and family communication, and establish pain as the fifth vital sign.

Another component of their approach is to look at ways to remove payer-related barriers and ensure a seamless transition from curative efforts to palliative care. In cooperation with Louisville, KY-based Passport Health Plan, which provides coverage for Medicaid patients, the partnership will implement a coordinated care model.

The highlight of the model is the use of a nurse case manager who will act as a patient advocate for terminally ill patients and as a liaison between physician and the patient and the patient’s family. (See related story, below right.)

"I have long believed that our health care system is ill-prepared to give end-of-life care," says Joyce Hagan Schifano, BSN, MBA, president of Passport Health Plan.

Schifano says the model will promote timely referral to appropriate providers, including hospices, that have battled shortened length of stays. While the model is designed to promote smooth transitions into various segments of health care, Passport also hopes to show its managed care colleagues that better care can lead to lower costs, as well.

While physicians, nurses, government policies, and payers have played a significant role in failing to provide adequate end-of-life care, consumers have been just as culpable for fostering modern medicine’s view on treating deadly diseases.

"It’s going to take the kind of grass-roots effort among consumers who demand good end-of-life care the same way women demanded more personal birthing care," says Spoden. "We don’t think people are demanding the kind of care they deserve."

It can be argued that the public’s failure to demand better end-of-life care has contributed significantly to the lack of movement on all other fronts. As part of their project, Kentucky researchers will try to gauge public opinion by hosting five open forums where people can share their stories that illustrate both shortcomings and merits of current end-of-life practices and policies.

People’s testimonies is not only expected to raise the public’s awareness of poor end-of-life care, but can also have an impact on health care professionals and lawmakers, Spoden says.

Kentucky is one of a number of states that have received money from the RWJF to study ways to improve end-of-life care. About the same time the Kentucky coalition was awarded its most recent grant, four other states — Florida, Minnesota, New Hampshire, and Oklahoma — were also awarded.

Grants ranged from $375,000 to $450,000, covering two to three years. A description of each state plans follows:

A statewide partnership in Minnesota received a two-year grant of $445,000 to improve care for terminally ill patients and their families. The Minnesota Partnership to Improve End-of-Life Care will focus on changing the way insurers reimburse medical professionals for end-of-life planning conversations, improving education opportunities for students in the health professions, and creating resource materials for consumers.

A statewide partnership in Florida received a three-year grant of $450,000 to coordinate an effort to improve care for all seriously ill and dying Floridians. The initiative involves Florida’s state health and elder affairs agencies, as well as professionals, policy-makers, educators, and citizens.

A statewide coalition in Oklahoma received a 2½-year grant of $375,000 to heighten awareness of the need for better care of the dying. The coalition is one of 23 statewide partnerships to receive funding under a new program encouraging state and community groups to improve end-of-life care.

A New Hampshire group received a three-year grant of $450,000 to lead a statewide advance care planning initiative. The project is designed to improve the way consumers and the health care community understand and use documents, such as living wills, to help patients obtain the care and support they prefer when approaching death due to an incurable illness.