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.
Disease Progression and Increased Pain
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.