The current medical system was developed to treat acute illness, but it often fails to meet the needs of patients with serious chronic illnesses that eventually will be fatal. Specialized care to relieve suffering and improve quality of life has grown rapidly in the United States. In 1975, only approximately 1,000 Americans received hospice care. This number increased to 775,000 in 2001. Research conducted during the past decade has shown that Americans with serious advanced illnesses want to be free from pain and other burdensome symptoms, maintain a sense of control, have their perspective respected, not be a burden to their families, and not experience futile care.
Palliative care grew out of, and includes, hospice care. Palliative care programs seek to extend the technological advances and much of the philosophical approach developed in hospice programs to the rest of the healthcare system earlier in the disease trajectory. Apart from standards for hospice care, there are no standards for palliative care that have been accepted by palliative care specialists and related communities. Yet, palliative care programs ensuring comfort and care for the whole person for patients with serious illness and their families are growing at an exponential rate in the United States.
In December 2001, a group of leaders in end of life, nominated by their peers, met in New York to discuss a national movement to improve the delivery of palliative care in the United States. This meeting was in response to a universal request to develop nationally accepted definitions of the essential elements and best practice of palliative care. Thus, The National Consensus Project was formed. The purpose of the National Consensus Project is to develop and implement voluntary consensus standards describing the scope and characteristics of both specialist and primary practice settings, with the hopeful outcome of formal recognition, stable reimbursement structures, and accreditation initiatives in palliative care.
A steering committee was developed, with 4 representatives from a consortium of 5 organizations that are involved in end-of-life care:
* American Academy of Hospice and Palliative Medicine
* Center to Advance Palliative Care
* Hospice and Palliative Nurses Association
* National Hospice and Palliative Care Organization
* Partnership for Caring: America's Voices for the Dying.
The full 20-member steering committee has been involved in developing the standards. The guiding principles of the standards are the following: relieve suffering, comprehensive assessment, patient-centered and family-centered care, comprehensive interdisciplinary holistic care, strong communication skills, access to care, and quality improvement. To achieve consensus on the document, the steering committee used the following process: delineation of domains of practice, development of standards based on the best available evidence, and 100% of the steering committee participation in document preparation, review, and editing, followed by consensus voting to achieve at least 70% agreement by individuals on the Steering Committee and 100% agreement by the 5 consortium organizations. A larger advisory committee was established from more than 100 people involved in healthcare. This committee has provided review and comment for the final draft of the standards.
The resulting standards, which cover 9 domains of care involved in caring for patients with life-threatening illnesses, are supported by the research evidence in the field. These standards will be published and available in late January. Because excellence in nursing is part of HPNA's mission, it is proud to have been a part of the process.
The HPNA hopes you will find them useful in creating new possibilities in improving end-of-life care in all healthcare settings throughout the nation.