Dying is a universal experience, and it is time to re-examine how we approach death and dying and how we care for people at the end of their lives. There is more that we can do to relieve suffering, respect personal choice and dignity, and provide opportunities for people to find meaning and comfort at life's conclusion.
Unfortunately, most patients and their families and physicians do not routinely make plans for end-of-life care. As a result, family members may find themselves making difficult end-of-life care decisions at a time of anguish without knowing the preferences of the dying relative. About one-fourth of Medicare funds are now spent on care at the end of life that is geared toward expensive, high-technology interventions and "rescue" care. Yet, most Americans say they would prefer to die at home, rather than in institutions where they may be in pain and subjected to high-tech treatments that can no longer cure but merely prolong suffering. Moreover, according to a Dartmouth University study, where a patient lives has a direct impact on how that patient dies. The study found that the amount of medical treatment Americans receive in their final months varies tremendously in the different parts of the country, and it concluded that the determination of whether or not an older patient dies in the hospital probably has more to do with the supply of hospital beds than the patient's needs or preference. The Advance Planning and Compassionate Care Act that I introduced with Democratic Senator Jay Rockefeller of West Virginia, is intended to help us improve the way our health care system serves patients at the end of their lives. Among other provisions, the bill makes a number of changes to the Patient Self-Determination Act of 1990 to facilitate appropriate discussions and individual autonomy in making difficult discussions about end-of-life care. For instance, the legislation requires that every Medicare beneficiary receiving care in a hospital or nursing facility be given the opportunity to discuss end-of-life care and to prepare an advanced directive with an appropriately trained professional. The legislation also requires that if a patient has an advanced directive, it must be displayed in a prominent place in the medical record so that all the doctors and nurses can clearly see it. This bill also will establish a telephone hotline to provide consumer information and advice concerning advance directives, end-of-life issues, and medical decision making. It further establishes an End-of-Life Care Advisory Board to assist the Secretary of Health and Human Services in developing outcome standards and measures to evaluate related programs and projects.
The legislation is particularly important in light of the debate on physician-assisted suicide. The desire for assisted suicide is generally driven by concerns about the quality of care for the terminally ill, and by the fear of prolonged pain, loss of dignity, and emotional strain on family members. I believe such worries would recede and support for assisted suicide would evaporate if better palliative care and more effective pain management were widely available. Patients and their families should be able to trust that the care they receive at the end of their lives is not only a high quality, but also that it respects their desires for peace, autonomy, and dignity. The Advanced Planning and Compassionate Care Act will give us some of the tools that we need to improve care of our loved ones at the end of their lives.