E.B. Writers of Dallas

Wayne Epperson | PULSE Magazine April 2006

Nobody enters a hospital to die. It’s their intent to get well, for their symptoms to be relieved.

Yet in critical care medicine nationwide, about 25 percent of patients admitted to hospital intensive care units will die there. But not before they endure an awful lot of pain and suffering.

A study of 9,000 seriously ill patients at five U.S. teaching hospitals showed that up to 60 percent suffered moderate to severe pain during eight- to 12-day hospitalizations, and that more than 50 percent had serious pain in the last three days of life.

The study published in the Journal of the American Medical Association also revealed:

 Poor communication between doctors and patients about the goals of care.
 Substantial emotional suffering by patients, families and health care professionals.
 Thirty-one percent of families lost most of their life savings paying for treatments and care.

Adding to those findings are statistics showing that 28.8 percent of all 2004 Medicare funds were spent on people in the last year of their lives.

These are a few of the troubling issues that medical personnel face in delivering end-of-life care.

“The challenge in medicine is how do we recognize when patients are in the last chapter of life? If we can’t cure them, if cure is no longer possible, how can we help patients and families and medical staffs make that transition,” says Robert L. Fine, MD, FACP.

Dr. Fine is director of the Office of Clinical Ethics at Baylor Health Care System in Dallas and director of Palliative Care for Baylor University Medical Center.

Clinical ethics and palliative care can help remedy what Dr. Fine calls three major deficiencies of treatment and care: Significant variability in the intensity of care without differing outcomes; a high degree of unnecessary suffering; and high costs to individual families and society.

The Palliative Care Consultation Service was established at Baylor in 2004 as a compliment to the ethics consultation. It is comprised of a large multidisciplinary team whose aim is to relieve suffering and improve quality of life for patients with advanced life-limiting, terminal or irreversible illnesses. The team also aids patients’ families and gives support and counseling to bedside nurses and physicians.

The team consists of five part-time physicians, who take palliative care calls for a week at a time, and one full-time and one part-time palliative care nurse.

There are a number of other professionals who are members of the team and attend weekly palliative care interdisciplinary team meetings. They either provide direct services to the patients or coordinate services with others from their respective departments across the health care center.

Those part-time professionals include a palliative care chaplain, a social worker liaison, a pharmacist, a nutritionist, a speech therapist, two occupational therapists with expertise in integrative healing techniques, and an administrative support person.

From its inception through Dec. 31, 2005, the palliative care service consulted with 331 patients ranging in age from 18 to 103.

Palliative care is provided while the patient is still receiving aggressive life-sustaining treatment. It becomes somewhat of a bridge to hospice care, where the patient has foregone all attempts at life-sustaining treatment.

In a study published in JAMA in 2000, 340 seriously ill patients were asked what they wanted at the end of life. Their first choice was freedom from pain, followed by peace with God and presence of family.

“Nurses are absolutely key if we are to improve the treatment and care of patients at the end of life,” says Dr. Fine, adding that bedside nurses continue to provide compassionate care even when medical treatment is withdrawn.

Dr. Fine played a role in helping develop the Texas Advance Directives Act of 1999 that regulates and guides decisions for near end of life. He invited Thomas Wm. Mayo, JD, director of the Maguire Center for Ethics and Public Responsibility at Southern Methodist University, to participate in the work of the coalition that recommended the legislation.

Mr. Mayo is co-chair of the institutional ethics committees at both Parkland Health & Hospital System and Children’s Medical Center of Dallas.

The Texas act is a massive rewrite of three statutes that covered such things as the legality of a living will and a medical power of attorney. It is among a handful of state statutes that say licensed health care professionals are not required to provide treatment to patients when the treatment is futile.

It further grants immunity from civil liability, criminal prosecution, and licensing board disciplinary action as long as the physician, health care providers and hospital or other entity conform to a due process safe harbor concept, a series of procedural steps to follow in futile cases.

If nurses are working with an attending physician within the safe harbor of the statute, they are protected from liability, just as are the doctor and the hospital.

“I think a lot of nurses haven’t been told or don’t understand that life-sustaining treatment can be withheld or withdrawn over the family’s objections if this statute is implemented,” Mr. Mayo says.

Families need to be reassured that even when the decision has been made to withhold or withdraw life-sustaining treatment, “we don’t abandon the patient, we continue to attend to the patient’s needs in terms of maintaining their dignity and comfort,” Mr. Mayo says.