New clinical guidelines for palliative care published

Initiative recognizes growth, maturity of field

The National Consensus Project for Quality Palliative Care, a consortium of five palliative care organizations, has released a set of clinical practice guidelines to promote quality palliative care in the United States. The "Clinical Practice Guidelines for Quality Palliative Care" seek to support quality and reduce variation in new and existing programs, develop and encourage continuity of care across settings, and facilitate collaborative partnerships among palliative care programs, community hospices, and a wide range of other health care delivery settings.

The consortium members are: The American Academy of Hospice and Palliative Medicine, Glenview, IL; Center to Advance Palliative Care, Mount Sinai School of Medicine, New York City; Hospice and Palliative Nurses Association, Pittsburgh; Last Acts Partnership, Washington, DC; and the National Hospice and Palliative Care Organization, Alexandria, VA.

"The field of palliative care has grown rapidly," observes Diane E. Meier, MD, FACP, of the Center to Advance Palliative Care and a member of the project steering committee. "But depending on where you were, there was a great variability in the definition of palliative care.’ It could mean one nursing home program that basically consisted of liberalized visiting hours, or an interdisciplinary team with a certain skill set."

Need for a gold standard’ has become obvious

As the field grew, she continues, the need for benchmarks — a "gold standard" to work toward — eventually became obvious. "It’s so early in the life of the field that we don’t want mandated standards, but we should be planning for a general interdisciplinary team, 24-7 coverage, training, and so on," Meier explains. "These guidelines have been created to try to assure a high level of quality for a growing number of palliative care programs across the country, some level of consistency among and between them, and a set of benchmarks against which programs can compare themselves."

The project’s initial leadership meeting took place in December 2001. Involved in discussions were the five leading palliative care organizations and several hundred leaders in a range of disciplines and health care settings who served as advisors. "This really does reflect the consensus of a broad group of leaders," Meier asserts. First, existing guidelines from Canada, Australia, and Great Britain were reviewed. "A number of other nations had previously developed guidelines," Meier explains. Similarities and differences of funding and structure were examined.

An evidence-based literature review also was conducted. "For some issues, there are clearly evidence-based random control trials, like the assessment of pain; for others, like the benefit of bereavement support, there were not," Meier observes.

The steering committee (four representatives from each of the five consortium members) developed a writing subcommittee, which in turn developed a detailed outline that was reviewed and edited. "Then, it wrote the actual document, which went through a number of iterations and review by the steering committee and external reviewers," says Meier.

The final product identified these core elements of palliative care:

  • patient population;
  • patient- and family-centered care;
  • timing of palliative care;
  • comprehensive care;
  • interdisciplinary team;
  • attention to relief of suffering;
  • communication skills;
  • skill in care for the dying and bereaved;
  • continuity of care across settings;
  • equitable access;
  • quality improvement.

In outlining the guidelines, quality palliative care was addressed in eight distinct domains:

  • structure and process of care;
  • physical aspects of care;
  • psychological and psychiatric aspects of care;
  • social aspects of care;
  • spiritual, religious, and existential aspects of care;
  • cultural aspects of care;
  • care of the imminently dying patient;
  • ethical and legal aspects of care.

What’s new and different?

A number of elements of the guidelines strike Meier as either new or especially significant in terms of general palliative care. "I’d say the first thing is the requirement for an interdisciplinary team," she notes. "That’s not to say that every hospital should have a full-time nurse, doctor, and social worker, but rather that there should be expertise from those fields available. This is a requirement. I know there are a lot of programs that are only a single physician or nurse practitioner; those programs will now need to look at how to create interdisciplinary resources."

Another unique element is the provision of bereavement support. "This is not routinely offered in U.S. hospitals, yet we know that over 50% of us die in hospitals, not hospice, so some form of screening and support has to be built in," says Meier.

Other elements of the guidelines are not unique to palliative care, but may not be sufficiently widely recognized or utilized in the field. "They include error reduction and use of routine QI methods, and what goes with that is the requirement to measure — that, too, will be novel," says Meier. "You can’t be confident you are delivering high-quality care unless you measure."

Meier adds that it’s too early in the life of this specialty to push for required compliance. "People feel they don’t need any more regulatory strangleholds right now," she comments. "We’ve established these guidelines not as a requirement, but as a gold standard. My hope is that, over the next decade, these will become not the exception but the rule."

At present, she notes, American Hospital Association membership surveys show that 25% of respondents have palliative care programs. "When we get to the point where it’s two-thirds or three-quarters, that will be the point where it’s likely the Joint Commission and other accrediting bodies will include guidelines for palliative care as a condition of accreditation," she predicts.

Nevertheless, she adds, "This is a huge step forward for the field. When you have consensus guidelines, it’s a statement of maturity."

Need More Information?

For more information, contact:

• Diane E. Meier, MD, Mount Sinai School of Medicine, P.O. Box 1070, New York, NY 10029. Telephone: (212) 241-6796. E-mail: diane.meier@mssm.edu.

The new palliative care guidelines can be found at www.nhpco.org under "What’s New."