Palliative, supportive care begins at MUSCby Cindy AbolePublic Relations MUSC's Palliative and Supportive Care Service is South Carolina's first hospital-based palliative care program. It is specialized to provide a special brand of care and comfort through a multidisciplinary practice for patients who require special attention throughout the course of their disease or when their disease is not responsive to curative treatment. The service provides a long-term assessment of pain and symptom management, treatment support, emotional and spiritual care with a focus on comfort and quality of life. The program is composed of a certified palliative care specialist, physician liaisons, a nurse pain specialist, oncology nurses, a cancer psychologist, clinical pharmacist, complementary and alternative medicine specialist—all part of a small corps of continual care. “Our vision and my work for the past five years have been to help develop and establish a palliative care center for MUSC that's multidisciplinary and dedicated to serve the patient to the best of our ability,” said Winnie Hennessy, R.N., MSN, Hollings Cancer Center palliative care coordinator. Hennessy's experience as an intensive care nurse for 16 years drove her interest in palliative care medicine, which she is basing her doctorate studies on. Beginnings of palliative care
Part of the group's focus was to help measure quality of life issues for patients—something that could only be accomplished through concrete symptom measurements. At the time, there were no methods for documenting pain measurements, so the team looked at other measurable resources. They performed a chart review of the medical center's dying process and collected data from MUSC database systems. The project focused on a random sample of oncology patients who died in the hospital during a specific period of time. Results revealed that half of all deaths occurred in the hospital's intensive care units and the other half die on the floor. They also learned that 2.5 percent of patients who die, account for approximately 10 percent of all hospital costs. Also conducted was a thorough review of pain. Of the patients who die on the floor 90 percent of do-not-resuscitate (DNR) orders that are written, occur three days prior to death. Of those, only 18 percent had comfort care orders. “There are a lot of things that we do that is based on long-term standards of professional training and clinical experience,” Hennessy said. “Some things in the hospital and acute care paradigm are done unnecessarily, thereby increasing hospital costs. In reality, these unnecessary costs divert money and attention from the areas of care that we do need to focus on such as patient/family closure, comfort care, etc. There needs to be a switch in the way we care for patients who are known to be terminal.” “What physicians and other health care professionals fail to learn in school is how to switch your thinking to do palliative care,” Hennessy said. “If you don't know what to do, you're naturally going to apply what you do know, which is usually the acute care model of care. But when you try to apply a medical illness based-scenario to a dying process. It becomes a mismatch of care. Many people fail to realize that dying is not an illness, it is a process.” A team comes together
“There's a fluid piece of this program that often gets neglected or misunderstood in medicine's big picture; we provide treatment for patients that benefits every area of care,” said Brescia, who is clinical director of the palliative and supportive care program. “Our focus in establishing this program is to try to fill in the gaps where patients may have particular problems or issues that have never been addressed and they don't necessarily have to be dying.” It was natural for the program to begin in oncology. Hollings Cancer Center staff were accustomed to work collaboratively with other clinical specialties in patient care including pain management, complementary medicine, pharmacy and pastoral care. Last December, the team opened the palliative and supportive care outpatient clinic at Hollings Cancer Center. At the same time, MUSC physician Jerome Kurent's Center for the Study of Aging and the Program in Bioethics have conducted the Promoting Excellence in End-of-Life Care grant, which explores culture, beliefs and ethnic traditions relating to death among Charleston's black communities. “For cancer patients, its easy for society to accept that end-of-life care should be supportive and that a person should be able to die comfortably,” said Betsy Bateman, R.N., a pain specialist and outpatient palliative clinic nurse. “But what about other patients who don't fit into the palliative care paradigm? A person may be suffering from the same symptoms from aggressive chemotherapy treatment —nausea, vomiting, pain, etc. —but are not dying. What does this mean for their quality of life?” Brescia fears that there may be some confusion about the role of this new service and what services Hospice provides. The traditional Hospice philosophy of care assists patients and their families prepare physically, spiritually and emotionally during the last six months of life. Brescia and his team want to expand upon that philosophy by providing the same level of comfort care to non-dying patients who may be struggling with multiple medical issues that affect their quality of life. “We want to make sure that we can be able to give what we promise—expert care,” said Brescia of the 90 percent cancer patients who come to the Wednesday afternoon palliative and supportive care clinics. So far, referrals to the program have been solely by word-of-mouth. Brescia believes that there are pockets of patients with non-malignant chronic disease that carry multiple symptoms that can benefit from this program. Part of the program's success so far can be attributed to the collective team of specialists who share their interest and philosophy of care with their expertise. “Every member of the team brings some unique skills and perspective in how we think about a patient and their family,” said Cindy Carter, Ph.D., a clinical psychologist who brings a new perspective to palliative care. “We want to stand behind our goal of treating the whole person, especially at the end of life. After we've exhausted medical treatment, isn't that what it's really all about—the patient and the family's needs?” “We thought that if its going to work, the team should consist of a variety of disciplines who not only can work well together, but have a sense of competency, communications and other skills to make things happen,” Brescia said. “Good communications is the key to its success.” Since December, the group has met on regular basis to discuss patient
care and progress, plus as a way to establish themselves in a sense of
mission. “We all have an investment in what we think this program is all
about,” Brescia said.
Funding and research
“It's not just the money,” Brescia said. “We need funding in terms of providing continuing education for our professionals, patient education and outreach. We need other support to free up the time of specialists from other commitments to conduct this level of care. All of us on the team have full-time jobs in addition to doing this work.” And with more academic medical institutions being financially challenged today, how do can hospitals like MUSC pay for this brand of expertise within a system that is financially crunched, while staying creative and making a the number one priority? “People who are sick and suffering from a variety of symptoms that have not been relieved should be an important priority for an academic university like ours,” Brescia said. “Our challenge is how do we make things better; gain more patients; lower the lengths of patient visits or help them stay out of the hospital. These are all examples of patient satisfaction, plus it's the right thing to do.” On the horizon
“There's still a lot for us to do,” said Brescia, who wants to draw ideas from other health programs in geriatrics, illnesses, intensive care, Bioethics and other areas that need to be addressed. “We need a real connection with actual decision-making and compliance with the medical rules of ethics which can encompass a lot of different things.” The program has won hospital support. Brescia has presented its benefits to MUSC's executive committee, medical ground rounds and office of development. Hennessy has communicated its progress to the clinical leadership group and medical center administration. “Although we've started off slow, we're trying to make sure we have people invested in this so that it goes beyond being identified as Brescia, Hennessey or Bateman's program, but our program,” Brescia said. “The more people are invested in it, the better it's going to be. This is something that is important, meaningful and part of the mission of an academic institution to be comprehensive in simply controlling issues around suffering.” For more information about the program, contact the Palliative Care team at 792-0590, pager #17175. MUSC Palliative and Supportive Care Team
March 27 Ramita Bonadonna R.N,. Ph.D.—Mindfulness Meditation and the Experience of cancer (sponsored by Ortho-Biotech) April 10 Robert Malcolm, M.D. (IOP)—Understanding the Differences between Addiction, Physical Dependence and Tolerance (sponsored by Cephalon-Actiq) April 24 TBA—Management of Bowel Obstruction in Palliative care (sponsored by Novartis-Sandostatin SR) May 8 Jacqui Rousseau—Advance Care Planning—Current thoughts and Trends - Dissemination of Conference (sponsored by Ortho-Biotech) May 22 TBA June 12 TBA—Pain Management with Devices (sponsored by Medtronics) June 26 TBA—Pain Management—(sponsored by Cephalon-Actiq)
|