House Joint Resolution 369, which was introduced during the 2000 Session of the General Assembly, directed the Joint Commission on Health Care (JCHC) "in conjunction with the American Cancer Society, Hospice, the Medical Society of Virginia, the Virginia Nurses Association, the Virginia Pharmacists Association, the Hospital and Healthcare Association, and the Virginia Cancer Pain Initiative [to] study the issues involved in palliative care." HJR 369 stated that the following issues should be addressed in completing the study: "(i) identify a central resource for patients and families; (ii) designate a central information source, as well as a training program for health professionals; (iii) identify barriers (access, economic, organizational, ethical, and legal barriers) as well as deficiencies that currently exist in the health care system; and (iv) develop an evaluation plan to assess quality and outcomes of palliative care in order to ensure that the patent and his family are able to maintain the best possible quality of life throughout the course of the disease...." The resolution also called for creating a funding mechanism to carry out the palliative care initiatives.
HJR 369 was not adopted by the General Assembly but was communicated via letter from the Speaker of the House of Delegates to the Joint Commission on Health Care. The Speaker's letter, indicated:
"The House Rules Committee believes that the issues addressed by the resolution merit review. Therefore the Commission is directed to undertake the study and to submit a written report of its findings and any recommendations to the Governor and to the 2001 Session of the General Assembly."
A copy of this letter and HJR 369, as introduced, are included in Appendix A.
Based on our research and analysis during this review, we concluded the following:
• Palliative care is "the branch of medicine that provides active care for people with chronic disease which is not responsive to curative treatment," and has a primary goal to provide comfort and relief from pain and suffering. Recent studies have documented that emphasis on therapeutic care to the exclusion of palliative care has often meant that individuals suffering from chronic and terminal diseases have died in severe and protracted pain, and usually in a hospital setting.
• Palliative care is beginning to receive significant attention in the United States in response to changes in disease management. Unlike the scenario of 100 years ago when life expectancy was less than 50 years with death typically resulting from contracting a communicable disease, today most Americans can expect to live for more than 75 years and to die of a chronic rather than acute disease.
• The fact that medical care has historically emphasized therapeutic care rather than palliative care has meant: (1) medical care curriculum is focused on therapeutic care with few courses related to palliative care being offered, and (2) pain medication and symptom relief are not generally well-understood.
• Nationally few medical and nursing schools require course work on "end of life" issues. These issues receive little coverage in the principal medical texts, and little formal training is offered during residency. An American Medical Association survey of medical schools found that only three percent have a required course on providing care to the dying. An informal survey of Virginia's three academic health centers found that none of the medical schools require a course on palliative care although some courses address topics related to such care. However, all three medical schools offer fourth-year electives in palliative care. The nursing schools in Virginia do not offer courses that are devoted only to palliative care. Although there is currently little opportunity for the practicing health care provider to learn about palliative care, several new programs, most notably the Education of Physicians on End of Life Care or "EPEC" program have been developed.
• Hospice programs are currently the principal providers of palliative care both nationally and in Virginia serving approximately 200,000 people nationally and 7,000 statewide. Hospice allows many terminally ill patients to remain in their homes and to receive costly but necessary pain medication as well as emotional and spiritual support. Medicare pays for 70 percent of hospice care provided in the United States. A 1995 study by the Lewin Group showed that in Virginia, each dollar spent for Medicare hospice services saved $1.19 in medical expenditures that would otherwise have been made.
• Some aspects of palliative care have been addressed in Virginia: in-home hospice services are available, hospice/palliative care units are located within several hospitals, and an intractable pain law and Health-Care Decisions Act have been enacted. However, there is no coordinated program or statewide effort to provide education and support to providers and families. Establishing a state-level palliative care entity could provide coordination to ensure that health care professionals have access to "best practices" information, that patients and their families receive useful information and support, and that information is available regarding the various palliative care programs throughout the Commonwealth.
• Despite the cost-effectiveness of hospice services, there are few residential and inpatient hospice facilities in Virginia due in part to the fact that there is no statutory provision for licensing hospice beds. This means that providers must be licensed as an assisted living facility, hospital, or nursing home in addition to being licensed to provide hospice services.
A number of policy options were offered for consideration by the Joint Commission on Health Care regarding the issues discussed in this report. These policy options are listed on pages 33 and 34.
Public comments were solicited on the draft report. A summary of the public comments is attached at Appendix C.