Senate PBR defines people with serious and complex illness as a distinct group to be protected under the law.
Recent Senate and House activity has focused on measures that would improve end of life care. Most significant for our long-term strategy is the Senate's passage of the Bipartisan Patient Bill of Rights (PBR) (S. 1052), which defines people with serious and complex illness as a distinct group to be protected under the law. These are patients who are so sick that they should not lose their physician suddenly just because their insurer decides to take that physician off their list of participating physicians. The House has also passed a bill with this provision, so any statute that emerges from conference committee will likely have this provision.
When early versions of patient rights' measures first began to appear on the Hill a few years ago, seriously ill people were defined as those with a terminal illness according to the Medicare hospice benefit. By rephrasing this definition, the Senate has taken a remarkable step toward protecting many more people than are protected under the Medicare definition. Rather than defining people according to their prognosis, the new category focuses upon the severity of illness rather than diagnosis or prognosis. When the category is established in the Patient Bill of Rights legislation, most likely Medicare will have to take some steps to define the inclusion criteria.
While public debates have focused on liability issues and who can sue whom and for how much, ABCD has focused its attention on how Congress views care for people with serious illness. A major issue has been to improve continuity of care for these patients, to prevent them from being shunted from one doctor or system to another. Currently, if a health plan ends a contract with a provider, patients must find a new provider immediately. Under the Senate version of the new bill, people with serious and chronic disease would have a 90-day transitional period during which they would not have to change providers. For patients with terminal illnesses, the transitional period for continuing care would continue for the remainder of the patient's life "for care that is directly related to the treatment of the terminal illness or its medical manifestations."
The Senate bill defines an illness one that "is life-threatening, degenerative, potentially disabling, or congenital; and requires specialized medical care over a prolonged period of time" as a "serious and complex condition." By protecting the rights of dying patients-based on the severity of disease, rather than predictions for how long they might live-the Senate has taken a giant step in improving care for these individuals.
Building on resources that ABCD had given her staff, Senator Hillary Rodham Clinton (D-NY) voiced her support for hospice and palliative care during remarks on the floor. Clinton stated, "Any healthcare professional that treats dying patients knows that the comfort of the patient is absolutely necessary and is often the most appropriate goal of care! At the very center of hospice is the philosophy that each of us has the right to die pain-free and with dignity. We should all embrace this philosophy."
In other Congressional activity, both houses have introduced versions of The Conquering Pain Act of 2001 (S. 1024 and HR 2156). The Conquering Pain Act of 2001 offers the nation an opportunity to respond to what it calls "the public health crisis of pain." Sponsor Ron Wyden (D-OR) has long been a champion of better pain management. The bill would:
Americans for Better Care of the Dying enthusiastically supports this legislation. In a letter to Wyden, Joanne Lynn, MD, ABCD President, wrote:
Through enactment of [the Conquering Pain Act of 2001], this nation will make substantial and enduring changes that would enable all Americans to rely upon good relief of pain and other symptoms. The pace of change will benefit from prominent reports, such as those this bill requires from the Surgeon General and MedPAC. Improvement will come from focused innovations such as the quality improvement engineered by the Peer Review Organizations and the important services delivered by the Family Support Networks.
ABCD is excited about certain provisions of the Conquering Pain Act, especially the creation of centers for excellence in pain management, examination of reimbursement barriers, and authorization of demonstration projects in end of life care.
To read details and full text for these bills, go to: www.thomas.loc.gov and type in the bill number. From Thomas, it is very simple to find your own representatives' e-mail addresses, go to www.senate.gov (for Senators) and to clerkweb.house.gov (for Representatives). Be sure to voice your support for including people with serious and complex conditions in all versions of the Patient Bill of Rights. And let your own representative know that you want support for the Conquering Pain Act of 2001.
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