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Ideas for Legislative Reform in End-of-Life Care

Now is the time to get Congress to do something about end-of-life care! ABCD is trying to help generate ideas for legislative reform. This site will house all suggestions offered by advocates, policymakers, providers and consumers and will be consistently updated as more alternatives are generated. The following ideas are just a beginning! If you have suggestions that you would like to add to this list, please email us at info@abcd-caring.org so that we can add your idea to the list. The suggestions have been arranged according to the seven Institute of Medicine recommendations set out in their 1997 report on end-of-life care, Approaching Death. The IOM recommendations are written in bold letters and the suggested agenda items follow. (Note: ABCD does not necessarily sponsor all of the suggestions included below.)

1. People with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful and supportive care.

• Add the right to effective end-of-life benchmarks to the Patients' Bill of Rights (symptom relief, advance care planning).

2. Providers must commit themselves to improving care for dying patients and to using existing knowledge effectively to prevent and relieve pain and other symptoms.

• Legislation could institute incentives for current practicing professionals to take continuing education courses in end-of-life care. Possible incentives are:
  1. bonus payments
  2. physicians who have not taken such courses would receive Medicare payment reductions-that would not be passed on to the beneficiary.
  3. Certain organizations could be reimbursed for costs of CME grants or contracts.

• Physicians, before receiving a DEA registration, should need to be able to answer questions about the appropriate use of opioids and other pain-relieving medications.

• Encourage interaction between the state medical boards and the DEA.

3. Revise financing mechanisms to encourage good end-of-life care, and reform burdensome drug prescription laws and regulations that impede good care.

• Allocate funding to create a risk-adjuster that is appropriate for caring for chronically ill individuals at the end of life.

• Revise the Conditions of Participation for Medicare fee-for-service to include standards for pain management and end-of-life care.

• Provide funding to HCFA to conduct demonstrations, such as MediCaring, to test new coordinated delivery systems, in both the traditional Medicare program, managed care and Medicare+Choice, to provide effective end-of-life care to chronically ill individuals.

4. Initiate changes in education programs for providers to ensure that practitioners have relevant attitudes, knowledge and skills to care well for dying patients.

• Provide grants, through HHS (eg HRSA), to schools to incorporate end-of-life training. Medicare GME funds could be reduced beginning in 2002 for schools who have not implemented changes by that date.

 5. Ensure that palliative care becomes a defined area of expertise, education and research.

• Create an Office of Palliative Care in the Department of Health and Human Services which could administer grants, act as a clearinghouse, provide continuing education regarding the Controlled Substances Act and distribute a "best practices in palliative care" list.

• HHS should submit a report to Congress annually on the quality of end-of-life care under the Medicare program together with suggestions for legislative improvements.

6. The nation's research establishment should define and implement priorities for strengthening the knowledge base in end-of-life care.

• Require the National Institutes of Health to spend 1% of its annual appropriations for each institute on end-of-life care and pain management issues. NIH should report annually to Congress on the amount of funds allocated for this purpose.

• Earmark funds for AHCPR to establish measurement instruments, benchmarks, guidelines, and health services delivery innovations with evaluations.

7. Encourage public discussion about the experience of dying, the options available to patients and families, and the obligations of communities to those approaching death.

• Expand the reporting obligation of the states under the Patient Self-Determination Act to include reports of the experience of the end of life in their state (locations of death, hospice utilization near death, family experience, etc.) and to make this report publicly each year.

• Push the Compassionate Care and Advance Planning Act which would build on the PSDA and improve the chances that patients' choices for end-of-life care will be respected.