National Consensus Project for Quality Palliative Care
An Interview with Betty Ferrell, PhD, FAAN & Judith Paice, PhD, FAAN
| Betty Ferrell, Ph.D., F.A.A.N. is a Research Scientist at the City of Hope Medical Center in Duarte, CA, and the Chairperson of the National Consensus Project for Quality Palliative Care. Judith A. Paice, Ph.D., F.A.A.N. is the Director of the Cancer Pain Program, Division of Hematology-Oncology, Northwestern University, Feinberg School of Medicine, a member of the Advisory Group for the National Consensus Project, and the President-Elect of the American Pain Society. |
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Questions
1: What is the National Consensus Project for Quality Palliative Care, and why and how did it begin?
 2: What organizations have been responsible for this project?
3: How were the guidelines developed?
4: Can you describe more specifically what the guidelines cover and give an example?
5: What has been the result of the publication of these guidelines?
6: How can the guidelines be useful to individual health care providers?
7: Will the guidelines help pain specialists?
8: What is your next step?
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-------------------------------------------------------------------------------------------------------------------------- Evelyn Corsini: Note: The Guidelines are available in summary fashion and full text at their website.
What is the National Consensus Project for Quality Palliative Care, and why and how did it begin? Betty Ferrell, PhD, FAAN & Judith Paice, PhD, FAAN: In the year 2002 five leading palliative care and hospice organizations came together to develop a task force to define what palliative care means and to put forth practice guidelines. They did this in order to raise the standard of health care for all people facing life threatening illness. Hospice was introduced into the United States 30 years ago and has been very successful. But often the very good quality of care that hospice offers only happens in the last 2 weeks of an individual’s life, and only for those who are enrolled in a hospice program.
Our goal was to broaden the focus of “hospice” to “palliative care.” We believed that palliative care guidelines would be helpful to health care providers at the onset of treating any patient with a serious life threatening illness. We believed that quality palliative care should be available to individuals across the lifespan, for children and adults. By developing guidelines we hoped to encourage the provision of the highest quality of care as early as possible after diagnosis. 
EC: What organizations have been responsible for this project? BF & JP: The task force brought together health care providers from both the hospice community and the palliative care community. There were five founding member organizations: the American Academy of Hospice and Palliative Medicine; the Center to Advance Palliative Care at Mount Sinai School of Medicine; the Hospice and Palliative Nurses Association; Last Acts Partnership; and the National Hospice and Palliative Care Organization. Now there are three sponsors: the National Hospice and Palliative Care Organization, founded in 1978, the oldest and largest nonprofit benefit organization devoted exclusively to hospice and palliative care; the American Academy of Hospice and Palliative Medicine, a physician’s group; and the Hospice and Palliative Nurses Organization, a nurse’s group. The NCP has collaborated with hundreds of other individuals and organizations. For example, the NCP recently held a conference call with leaders in the field of pain management, including Dr. Paice as President of the American Pain Society, to discuss ways to disseminate the NCP Guidelines within the field of pain.
EC: How were the guidelines developed? BF & JP: The guidelines were developed by an interdisciplinary group of over 100 advisors across the country, primarily physicians, nurses, and social workers. Within the advisory group there was a lot of agreement about what the important elements of providing palliative care were, for example pain and symptom control, the use of interdisciplinary teams and coordination of care, and the need to have both the patient and the family the focus of intervention. The guidelines pulled together the best ideas in order to document them and communicate them in a way that had not been done before.
EC: Can you describe more specifically what the guidelines cover and give an example? BF & JP: The guidelines are divided into eight sections:
- Structure and Processes 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
A specific example is the section on Physical Aspects of Care, which specifies Pain, other symptoms and side effects are managed based upon the best available evidence, which is skillfully and systematically applied. Among the many criteria listed are:
- "Response to symptom distress is prompt and tracked, through documentation in the medical record."
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"Barriers to effective pain management should be recognized and addressed, including inappropriate fears of the risks of side effects, addiction, respiratory depression, and hastening of death in association with opioid analgesics."
- "A risk management plan should be implemented when controlled substances are prescribed for long-term symptom management."
- "Referrals to health care professionals with specialized skills in symptom management are made available when appropriate…"
EC: What has been the result of the publication of these guidelines? BF & JP: We have had an enormous response. Within the first two months of their release 200,000 copies were downloaded, and this number continues to grow. What has been very gratifying is that many organizations have endorsed the guidelines. A good example is the National Quality Forum. Their mission is to improve American healthcare through endorsement of consensus-based national standards for measurement and public reporting of healthcare performance data that provide meaningful information about whether care is safe, timely, beneficial, patient-centered, equitable and efficient. The National Quality Forum has used the Consensus Project guidelines as a basis for creating new standards in health care settings for palliative care to be released in May 2006!
EC: How can the guidelines be useful to individual health care providers? BF & JP: The guidelines are applicable to the work of providers in primary treatment settings where palliative approaches to care are integrated into daily clinical practice. They can help support the actions of providers who are facing administrative barriers to delivering the care for a patient in the way they believe is best. The guidelines have references, and provide criteria and credibility. We know that while much progress has occurred in pain management, there continues to be a fear of hastening death through the use of opioids and inadequate management of pain and other symptoms.
EC: Will the guidelines help pain specialists? BF & JP: Management of pain is a major element of palliative care. Palliative care providers may need additional expertise in pain management; pain specialists may need additional expertise in end of life care. The guidelines provide useful education for all health care providers, who can evaluate their own work by asking themselves this question, "Are we meeting these criteria?"
EC: What is your next step? BF & JP: At this time our major effort continues to be the dissemination of the guidelines. We have been received very good feedback from providers and will be updating these guidelines in 2007.
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