Nurses seeking to meet the palliative care nutritionalneeds of their patients are increasinglychallenged to work with ongoing, evolving situations,as patients live longer and longer. In the complexcase described below, which illustrates some ofthese challenges, it was useful to have in place,accessible, standardized assessment tools that allowedfor continued nutritional follow-up acrosspractice settings, targeting interventions that best fitwith the patient's goals.
Nurses seeking to meet the palliative care nutritional needs of their patients are increasingly challenged to work with ongoing, evolving situations, as patients live longer and longer. In the complex case described below, which illustrates some of these challenges, it was useful to have in place, accessible, standardized assessment tools that allowed for continued nutritional follow-up across practice settings, targeting interventions that best fit with the patient's goals.
Gina was a 36-year-old woman I worked with for 2 years. When I first met her, she lived in a fourth floor walk-up apartment with her 13-year-old son, 19- year-old daughter, and two granddaughters. She was seen by the Pain & Palliative Care Service because, after a 7-year disease-free state, her cervical cancer had recurred and given her significant left hip and pelvic pain.
At the time of referral, she was undergoing combined- modality therapy with cisplatin and radiation. When I met her, in addition to pain, she was experiencing fatigue, anxiety, occasional nausea, and depression. Her history reflected a 12-pound weight loss in the preceding 6 months. When her pain was controlled (with a sustained-release morphine preparation around the clock and immediate-release morphine sulfate) she had an improved appetite and was actually able to gain weight. This enabled her to complete her cancer treatment. She continued to be followed by the counseling center and her primary oncologist.
We did not see Gina again until 7 months later, when her pain returned. When she saw us, she had already been restarted on her morphine regimen. Other problems included constipation (from her opioid regimen) and persistent nausea. Although she had not lost weight, these symptoms had negatively impacted her nutritional state. Rotating her from morphine to oxycodone for pain control lessened her nausea and improved her pain control. This improved pain control enabled her to continue to shop and cook, meeting both her nutritional needs and those of her family. After 6 weeks, her pain increased and the upward titration was limited by sedation and confusion. It was at this point that we converted her opioid to methadone, with good pain control and side effects resolved.
Approximately 11 months after we met Gina, she received bad news. Her CT scan showed further progression of disease. Within 2 weeks, because of increased severe crampy abdominal pain and distention, she was admitted via urgent care to rule out bowel obstruction. It was during this admission that more recurrence was confirmed. The first of several patient-family meetings (which included her fianc, her 19-year-old daughter, the primary oncology team, and the pain and palliative care service) was held. During this meeting, we worked to clarify Gina's goals of care. She was quite clear that this meant living as normally as possible, as long as possible, with minimal invasive procedures. After this meeting, her daughter was able to rearrange her life to take over more of the cooking and shopping, and Gina was started on supplemental oral feedings to make it less labor intensive to meet her nutritional needs when others were not around.
For 4 months after this discharge, life became calmer for Gina and her family. Then, in the setting of increased left lower abdominal pain, increasing anxiety, and recurrent urinary tract infections, she was found to have more cancer progression that obstructed her left ureter, causing a left hydronephrosis. She was admitted for a left percutaneous nephrostomy. Two weeks after this procedure, she was readmitted for pain control, nausea, and vomiting. Her functional status was deteriorating. Following another patientfamily meeting, it was decided to place a peripherally inserted central catheter (PICC) line and convert her oral analgesic regimen to an intravenous methadone patient-controlled analgesia (PCA). Also, at this point, she chose to be discharged to her fianc's mother's apartment in an elevator building.
These decisions, although difficult for Gina, had some positive nutritional outcomes. Her fianc, home on disability, could concentrate fully on her care. He cooked foods that were appealing to her, feeding her small amounts on a frequent basis. On the intravenous PCA, Gina had better pain control, less nausea, and less constipation, and was able to eat and drink more. Although she had initially been resistant to more invasive methods of pain control, she felt that this change had improved her quality of life, allowing her to focus less on the pain and more on her family.
Over time, Gina's nutritional status was significantly impacted by progression of disease, pain, pain medication, constipation, fatigue, and deteriorating functional status. Standard assessment tools, in place electronically and available across practice settings, allowed for continued follow-up and continuity of care. Treatment decisions were made based on her goals of care. During the remaining 6 months of her life, she had several readmissions for pain control but was able to maintain a way of life that gave her some satisfaction.
Gina's case illustrates that palliative care is not reserved just for the end of life when life-prolonging therapy is ineffective, but instead, occurs across the disease trajectory. In the best of circumstances, by addressing palliative care issues such as nutrition, palliative care may prevent or minimize the morbidity of disease and promote quality of life.
Dr. Steinbaugh asked discussants to describe how a multidisciplinary effort such as supportive care fits into individual institutions.
• Screening. Discussants agreed that a primary issue is getting patients screened for nutrition risk and into supportive care early at diagnosis, when possible. Dr. Bloch described practical and logistic challenges of establishing a screening system in an institution in which a variety of departments and outpatient clinics care for patients with cancer. Clinic staff in Dr. Bloch's institution do not administer her program's modified PG-SGA screening form; patients fill it in themselves. Initially, patients filled out the form when they reached the radiation department and a dietitian would pick up the forms from a designated box and follow up with those at risk. Now, physicians and nurses in several clinics are aware of the dietitian's services and often refer patients directly to the dietitian. Dr. Ferguson found that in an inpatient hospital setting, adding nutrition screening questions to the nursing assessment form was easier than using a separate form.
• Referral. Mary Layman-Goldstein stated that well-informed patients and their caregivers in her institution's outpatient clinic often request supportive care services. Patients are also referred to supportive care by oncologists or by the institution"s inpatient consultant service. Several discussants pointed out that some oncologists do not want to relinquish control of patient care to "specialists." Thus, many health-care providers, as well as patients, need to be educated about the value of supportive care. Dr. Bloch reiterated the importance of well-informed patients to drive interest in nutrition. Dr. Murphy-Ende observed that the nurses in their palliative care consult service will receive the first call for supportive care, and they will call in other specialists (eg, dietitian or pastor) as needed.
Patients and health-care professionals alike need to be informed about available palliative or supportive care. Ms. Loney described a palliative care team at Cleveland Clinic that effectively markets itself and encourages referrals.
Kathleen Thrush reminded discussants of the need to assess the importance of various symptoms to patients because patients' priorities may differ from those of clinicians. Evaluating a patient's responses to PG-SGA questions is one way to determine these priorities. Dr. MacDonald also described how the Edmonton Symptom Assessment Scale elicits information valuable to clinicians. Establishing a patient's personal assessment of symptoms and symptom priorities can help clinicians focus supportive care and improve patient quality of life. Dr. Gallagher-Allred observed that patient priorities also might have a cultural dimension. Thus, Hispanic patients may have different supportive care priorities than, say, Native American patients.
An outcome of patient referral is that patients are transferred from the care of one person or department to another. Thus, continuity of care becomes an issue. Louisa Daratsos described how having computerized records helps her institution provide continuity of care for patients with cancer. The system helps by providing "patient alerts" so that patients can be located when they come back into the hospital. Ms. Daratsos also explained that when a patient receives primary treatment, he or she is assigned to an outpatient social worker who continues to provide support as long as the patient remains in the system. The oncologist and a palliative care expert work with the patient as well, so that supportive care provided by a multidisciplinary team is initiated "upstream" in the care process. Ms. Loney explained how, in her institution, she helps to provide continuity of care by being the link between members of the multidisciplinary care team on behalf of individual patients.
Discussants described challenges such as territoriality that make supportive care more difficult to deliver. Oncologists, for instance, may be reluctant to give up some aspect of patient care to palliative care specialists. Thus, patients may not be offered supportive care (eg, nutrition support) until curative efforts have been attempted and failed. Dr. Salon argued that supportive care should begin as early as diagnosis and be offered concurrently with curative treatment. Ms. Loney suggested calling the interdisciplinary care group a "symptom support team." This terminology promotes the perception that the team's efforts are not only end-of-life measures and obscures lines drawn between oncology, palliative care, and hospice.
Julie Fleshman noted that if this "symptom support team" functioned from the beginning (from diagnosis), clinicians would not feel "loss of control" when the patient begins to receive palliative care. Ms. Thrush also pointed out that this approach would help ensure that patients understand that the team's efforts are adjuvant therapy-symptom management-and will not necessarily replace their chemotherapy.
Discussants agreed on the need for good research on the impact of nutrition in the treatment of patients with cancer, but they also agreed that such research raises a number of ethical, practical, and scientific issues:
• Medical oncology tends to be "protocoldriven" and many protocols are narrowly focused "explanatory trials." Such a trial may focus, for instance, on demonstrating that drug X produces result Y.
• "Real world" questions about what happens when nutrition is combined with, say, chemotherapy are more difficult to answer. Dr. MacDonald pointed out that mounting a clinical trial to answer such questions is difficult because the sponsors and perhaps the researchers themselves are likely to approach the study as two separate trials with different objectives.
• Nutrition support is likely to be viewed as a confounding variable in most trials and patients who receive it are eliminated from participation. Typically, patients can participate in only one trial at a time.
• Patients who come to the large cancer centers in which many trials are conducted typically want aggressive, curative treatment, not palliative care.
• Research on quality-of-life issues is consid ered "soft"; thus, even well-designed studies may not be approved.
• Getting funding for nutrition trials is also challenging because, unlike drug trials, they are difficult to control. It is likely that well-informed patients can get the food or nutritional supplement being tested.
Dr. Jatoi indicated that supportive care is more likely to be a component of phase II trials than of phase I trials because the objective in the latter is narrow: assessment of the toxicity of an investigational agent. She also pointed out that since 95% of cancer patients in the United States are not enrolled in drug trials, there should be many available for nutrition trials. Dr. MacDonald suggested recruiting patients in community clinics.
In the absence of randomized, placebo-controlled double-blind studies, Dr. Salon asked, "What level of evidence of the value of nutrition support will the clinical community accept?" Dr. Salon responded that sometimes treatments accepted without evidence turn out to be dangerous. Dr. MacDonald pointed out that evidence-based medical results from extensive phase II trials can be acceptable data. Cleora Roberts also suggested using a research design based on two-way analysis of variance to look at, for instance, effects of drugs and/or nutrition in patients with cancer. Ms. Thrush observed that such studies require a large number of subjects and are very expensive. Pharmaceutical companies are reluctant to bear the cost because of their lack of interest in the nutrition component. Dr. Bloch suggested that clinical experience showing that an approach works and does not harm might be sufficient.
Kim Goodman described his experience as a family caregiver when his father was diagnosed with pancreatic cancer. He became a well-informed advocate for his father, seeking out supportive- care options on his own. Mr. Goodman heard about trials for ProSure-a specialized nutrition beverage for people with cancer. He was able to get some of the product and found it helped his father gain weight and improved his quality of life and physical activity. Mr. Goodman indicated that he wished that he had been informed earlier about nutrition options for his father. Ms. Fleshman agreed that a supportive care system should be in place at the point of diagnosis. Early care is especially important for people with pancreatic cancer because its course is so rapid.