"With the aging of the population, more and more Americans will care for dying loved ones," Grassley said. "Unfortunately, most of us lack the knowledge to be good consumers in this area. We're uncomfortable talking about death. That's human nature, but it's also human nature to want a peaceful passing for our ailing family members. We can do a lot to improve their comfort."
Grassley's comments came after a hearing, "The End of Life: Improving Care, Easing Pain and Helping Families," at which two family members described dramatically different experiences with dying loved ones, and experts testified about the medical community's lack of attention to end-of-life issues.
Shelly Twiford of Dakota City, Neb., described the poor care her dying mother received, including inadequate pain management and frustrating interactions with health care practitioners.
Linda Todd, director of Hospice of the Siouxland in Sioux City, Iowa, said recent research by the National Hospice Foundation shows Americans would rather talk to their children about sex and drugs than to their terminally ill parents about end-of-life care.
Dr. Richard Rosenquist, director of the Pain Management Clinic at the Veterans Affairs Medical Center in Iowa City, Iowa, said pain in most cancer patients is inadequately treated, although 50 percent of all deaths are from cancer, with 75 percent of advanced cancer patients experiencing "moderate" to "very severe" pain.
Dr. James Tulsky, a pain treatment expert with the Veterans Affairs Medical Center and Duke University in Durham, N.C., audio-taped more than 150 conversations between doctors and patients at the end of life. He found doctors used "vague language, did not explore patients' values and, for the most part, ignored the tremendous emotional impact of these discussions on patients."
Witnesses also described positive developments that Grassley said he hopes will be duplicated elsewhere:
- Duke University's Institute on Care at the End of Life addresses dying patients' spiritual needs as well as their physical needs. This came after seriously ill patients named spiritual peace as a primary concern.
- The federal Veterans Health Administration has undertaken a major initiative to treat the pain of patients at veterans' hospitals nationwide.
- The RAND Center to Improve Care of the Dying has published a guidebook that offers common-sense advice for the families of terminally ill patients.
Grassley said he hopes to advance the public debate by holding a hearing in September on the Medicare hospice benefit. He has asked the General Accounting Office to study the barriers to more widespread use of hospice care.
"Some may consider death a depressing subject, it doesn't have to be," Grassley said. "Death is a fact of life. Taking some measure of control over the last part of our lives, and making it a fitting conclusion, is a hopeful and uplifting idea."
Grassley listed six things everyone should expect at the end of life:
- Honesty from health care professionals about prognosis and about what to expect along the way.
- Pain being taken as seriously as other medical issues, and treated with the best palliative care medicine has to offer.
- Care that is continuous, coordinated and comprehensive.
- Respect for personal preferences about treatment methods and setting.
- Full information about options and support services for physical, emotional and financial needs.
- And finally, being treated at all times with compassion and care as a person, not simply as a disease.