Above, Janice and Michael Panicola Sr. with their son Michael Panicola Jr.

A Case for Palliative Care

Michael Panicola Jr., SSM Health Care corporate vice president - ethics, made a presentation along with three other professionals at SSM's Showcase for Sharing on November 11, 2010 on the topic of palliative care. Palliative care is designed to relieve suffering and improve quality of life for people with serious illness. It is centered on a family meeting; a session where caregivers explain the complexities of the illness in understandable terms; asking patients and families about their goals; and then seeking to ensure that those goals are met. All so that patients, families and caregivers share an understanding about the course of treatment. This summer, SSM Health Care announced that all of its hospitals will offer palliative care programs by the end of 2012. Panicola's remarks follow:

Janice had just turned 31 years old when the symptoms started but they were so nondescript that she didn't think much of them. It was only after a few months of what she described as "not feeling right" that she decided to see her physician. After doing a thorough check-up, her physician assured her that she was fine and probably just suffering from stress related to her new job. This made Janice feel much better mentally but the physical signs -- bloating, constant fatigue, and low back pain -- did not subside. Over the course of the next nine months, she saw her physician several more times. It wasn't until the last visit, nearly a year after she first noticed the symptoms, that he expressed concern with her blood work and referred her to an oncologist at the university hospital. This new physician was quick to diagnose Janice with ovarian cancer, which, he informed her, had already spread to other parts of her body, of most concern to her liver. The good news, as he put it, was that through a combination of surgery, chemotherapy, and radiation they could "beat the cancer."

Treatment Fails
First came the surgery, which Janice reluctantly accepted because it meant she would never again be able to have children, then the months of chemotherapy and radiation, which took its toll on her. Janice lost considerable weight as well as her long hair and frequently experienced intense pain and violent bouts of vomiting. Despite the optimism of her oncologist, the treatments did not put the cancer into remission or shrink the tumor in Janice's liver. Unphased, the oncologist insisted on a second-round of chemotherapy, combined again with more radiation. This time, though, they would be using a different cancer-fighting agent for a longer period of time, which could, he cautioned, worsen Janice's previous symptoms. As before, Janice agreed to the treatments, but once again they failed to have their desired effect.

Enduring Treatments, Despite the Price
For much of the second-round of treatments, Janice was hospitalized so they could manage her complications, especially the anorexia and recurrent build up of fluid in her abdomen that made her appear as though she were in the late-stages of pregnancy. As she became further removed from the chemotherapy and radiation treatments, Janice began to feel somewhat more like herself but she was still dealing with persistent pain that at times was so excruciating that her cries could be heard throughout the hospital wing that she shared with others. Approximately two months after the treatments had ceased, Janice's oncologist informed her that the tumor in her liver had grown to such proportions that there was a good chance it would cause her liver to burst, in which case she would die. Janice's only hope, he told her, was to submit to even more toxic levels of chemotherapy drugs, "investigational doses" were his precise words, so they could shrink the tumor. Rather than acquiescing as she had done the last time, Janice questioned whether she would be able to endure the treatments and if it was really worth the price she would have to pay. Her oncologist, however, encouraged her to go forward regardless of the untoward effects the treatment would have on her because that was her only chance.

Succumbing to the Disease
As before, Janice gave in and soldiered on, enduring more chemotherapy, all the while remaining in the hospital while the drugs shrunk the dangerous tumor in her liver but simultaneously ravaged her to the point that she was hardly recognizable. Once again, the treatments failed and eventually Janice succumbed to her disease at the age of 33. In the end, Janice had endured a major surgery, three lengthy rounds of chemotherapy combined with radiation treatments, and over 200 days in the hospital, many of which were spent in great pain. She lost nearly 60 pounds from the time she first detected the symptoms and died a shadow of herself at 72 pounds. Her last month of life was spent in the Intensive Care Unit, with the final two weeks in a state of medically-induced unconsciousness, on a mechanical ventilator, with a feeding tube, and receiving antibiotics. Janice was surrounded by her family at the time of death, but none of them were prepared for this outcome because until that time everyone's focus, with the possible exception of Janice herself, was on a cure and "beating the cancer."

When Technology Can't Cure
Throughout Janice's lengthy battle with cancer, ranging over 2 1/2 years, no one ever approached her about the possibility that modern medical technology might not work, that there might be less aggressive means they could try that would improve her quality of life, and that as the end approached hospice might be a better option than the hospital's intensive care unit. What's more, no one ever asked Janice what her wishes and values were, how much she was willing to endure, and where she might like to die when the time came. While Janice's oncologist did the best he could given the training afforded him, he never focused on her pain and other symptoms with anything approaching the diligence and fierceness that he attempted to conquer her cancer. The rest of the caregivers were always kind and played their respective parts, but no one took charge and coordinated Janice's care and few looked upon her holistically. It was the classic response we have come to expect in modern hospital settings, each caregiver focused on her/his part of the problem, be it the cancer, the respiratory issues, the nutritional deficiencies, the infections, and so on.

My Mother
It's hard to capture adequately in words what Janice experienced but I

Michael Panicola Jr., SSM corporate vice president - ethics, today.

certainly remember the way I felt even though I was just 12 years old at the time. Janice was my mother... Even though her death occurred 27 years ago in 1983. things have not improved all that much. Her story is one that is replayed countless times every day at hospitals across the country as well as within our own health-care system.

(Panicola made his presentation at Showcase for Sharing along with Drs. Daniel Hoffman and Michelle Schultz and Robert Porter, president of programs-chief strategy officer for SSM Health Care-St. Louis.)