ANAHEIM, CALIFORNIA—Challenges exist in providing end-of-life nursing care for patients with pancreatic cancer, including lack of studies that include nurses, unidentified theories, the difficulties of deciding the end point, and underexplored patient needs, according to new research presented at the Oncology Nursing Society (ONS) 39th Annual Congress.
At diagnosis of pancreatic cancer, survival rates are low and life expectancies are short. This population needs comprehensive and timely end-of-life care, which is imperative yet challenging.
“As more and more studies start to look at specific end-of-life needs for cancer patients, we found that these needs, including end-of-life symptoms, spiritual needs, and psychosocial needs, differ according to cancer type. However, less studies are looking specifically at pancreatic cancer,” Chia-Chun Tang, RN, MSN, OCN, of the Indiana University–Purdue University Indianapolis, said during a podium session.
To learn more, Tang and colleagues conducted an integrative literature review of 16 articles examining end-of-life care for patients with pancreatic cancer. The majority of articles had a lower level of evidence, such as case studies. The top three areas of focus were patients’ physical symptoms and signs, communication and decision-making issues, and psychosocial aspects.
Studies on physical symptoms focused disease-related symptoms, side effects of treatment, and symptoms related to death or the death process. These included pain, fatigue, nutrition-related symptoms such as weight loss and loss of appetite.
The research indicated that the intensity and distress level of those symptoms were significantly higher in terminal patients with pancreatic cancer and that they tended to increase in intensity in the last weeks before death. Results also identified fatigue and nutrition as the most distressing symptoms, followed by pain.
Data from studies on communication and decision-making in this patient population highlighted difficulties in the decision to shift from aggressive care to comfort care. They also revealed that quality of collaboration between patient and health care provider was associated with the quality of communication, indicating that providers play an important role in end-of-life care in pancreatic cancer.
“Timing is a very sensitive issue for this patient population because the patients have limited time to prepare for their death,” Tang said.
The literature also showed that, while hospice use doubled over 10 years, half of the patients who died did not enroll in hospice, and half even received aggressive treatment in the last month of life, according to Tang. One study found that, even for advanced pancreatic cancer, patients were more likely to receive aggressive treatment like chemotherapy in the last weeks of life compared with patients diagnosed at an earlier stage.
“So findings suggest that these terminal patients may not have enough time or resources in their end-of-life period,” Tang said.
In terms of psychosocial issues such as depression, anxiety, and burden on family members and caregivers, researchers found that hope is still a protective factor for patients even in advanced stages of the disease. Even in the absence of a cure, Tang said, it still helps to think positively.
Although the literature failed to establish a definitive correlation or relationship between poor disease outcomes and psychosocial effects on patients and family members, one study suggested that, when patients experienced pain or weight loss, they also experienced more anxiety or distressing feelings.
While these studies add to the knowledge base about patients’ end-of-life experience with pancreatic cancer, more can be learned, according to Tang.
“We need to clarify concepts and identify theories to guide systematic nursing practices and research. We need to identify the possible relationship between symptoms or symptom clusters to provide more effective symptom management,” she said.
“We also must discover appropriate timing to introduce hospice care and establish valid indicators to measure pancreatic cancer patients’ quality of end-of-life by examining the relationship between these indicators and outcome.”
In addition, more research into patient and caregiver perspectives is important, as most of the studies included in the literature review were from a health care provider’s perspective.
“When patients and their families are interviewed, most indicate that psychosocial and spiritual issues make suffering unbearable, and that reminds us that we need to emphasize psychosocial needs, decision-making issues, and communication needs to provide more comprehensive care,” Tang said.
Tang CC. End-of-life experiences of patients with terminal pancreatic cancer: An integrative literature review. Presented at: Oncology Nursing Society (ONS) 39th Annual Congress; May 1-4, 2014; Anaheim, CA.