Fast Facts in Palliative Care: A Focus on Pancreatic Cancer
Nina N. Grenon, DNP, AGCNP-BC, AOCN
Center for Gastrointestinal Oncology
Dana Farber Cancer Institute
Pancreatic Cancer Is a Disease Associated with Significant Mortality and Morbidity
In the United States, pancreatic cancer is the fourth leading cause of cancer-related deaths. In 2016, of the estimated 53,070 new cases of pancreatic cancer, approximately 41,780 patients will die from the disease.1 The overall 5-year survival rate among patients with pancreatic cancer is less than 5%,1-3 and the median overall survival of patients with locally advanced pancreatic cancer is 9 months. For patients presenting with metastatic disease, survival is reduced to 3 to 6 months.2,4
Patients who present with advanced disease also experience significant disease-related morbidity, with numerous distressing symptoms resulting from their cancer. For many patients, this disease is associated with pain, jaundice, anorexia, weight loss, sleep problems, depression, and anxiety,5-8 with symptoms predictably increasing in severity as death approaches. Worse, patients whose symptoms have been poorly controlled generally experience increased psychological distress, in addition to loss of physical functioning and a decrease in quality of life (QOL).9
Morbidity in pancreatic cancer is not limited to disease-related symptoms. The chemotherapeutic and multimodal approaches often used to treat patients with advanced pancreatic cancer have a wide range of adverse effects, as well, and the management of these treatment-related adverse events is key to ensuring a patient’s QOL. The philosophy and goals of curative therapy and palliative care are quite different, however, and as clinicians analyze the risk-benefit ratio of aggressive therapy in individuals with advanced disease, they must carefully consider the negative effects of potential treatments on physical, social, and emotional functions, and how these will affect the patient’s QOL. The impact of treatment must also consider the patient’s multiple physical needs, intense emotional distress manifested by anxiety, depression, and the complex needs of patients.10,11 A small but growing body of literature focusing on the needs of patients living with pancreatic cancer has documented that patients with advanced disease appear to be the most vulnerable to prolonged physical problems and psychological distress.12,13 Success in managing multiple, progressive signs and symptoms in pancreatic cancer is important for all patients at all stages of disease, but this becomes the overriding imperative for those facing advanced illness.
Maximizing QOL Should Be at the Center of Our Concerns
Current conventional treatments for pancreatic cancer include surgery, chemoradiation, systemic chemotherapy, and combinations of all three. The goal of treatment for the majority of patients with pancreatic cancer is largely palliative; that is, relief of suffering and control of the distressing symptoms with optimization of supportive care.14,15 Palliative care provides comfort and dignity for the person living with the illness, and results in the best possible quality of life for both the patient and his or her family. As such, the palliation of suffering is of utmost importance to the appropriate and effective care of patients with pancreatic cancer and their families, and often has a profound effect on QOL.
Moreover, it is important to remember, palliative care services are helpful, not only when a person is approaching death, but also during the earlier stages of an illness, as well. Palliative care may be combined with other treatments aimed at reducing or curing the illness, such as chemotherapy, radiation, and surgery. Effective combinations of these therapeutic strategies with palliative care will contribute to preserving the patient’s dignity and self-worth, and to the achievement of the patient’s personal goals. Unfortunately, while developing treatments that will delay disease progression and prolong the patient’s survival, clinicians often place a lesser priority on the holistic view of helping patients with cancer to achieve the best possible quality of life. There is a need to change the paradigm for advanced cancer care to include an earlier and more thorough assessment of patients’ options, goals, and preferences, and to tailor the care delivered to these individual needs throughout the continuum of care.16
Major Organizations Endorse the Early Integration of Palliative Care
Since 1997, both national and international organizations have advocated for the inclusion of palliative care in comprehensive cancer therapies throughout the trajectory of the illness. Moreover, these recommendations are not dependent upon the goals of treatment for patients with pancreatic cancer: the American Society of Clinical Oncology (ASCO), National Comprehensive Cancer Network (NCCN), Institute of Medicine (IOM), WHO, and the European Society of Medical Oncology (ESMO) all endorse the early integration of palliative care, regardless of whether the goal of treatment is curative or palliative.22-26
ASCO has further formalized these recommendations through the ASCO Provisional Clinical Opinion, which addresses the integration of palliative care into standard oncology care. This opinion is based on a number of studies focusing on the positive effect of the early integration of palliative care into treatment strategies on quality of life. These studies clearly demonstrate early and effective integration of palliative care supports decreased depressed mood, increased understanding of prognosis, less aggressive treatment at the end of life, and improvement in survival.27-30 New policies and guidelines published by ASCO encourage physicians to initiate open dialogue about palliative care and treatment with patients as soon as a diagnosis of incurable cancer is identified.
It Takes a Team
Palliative care is provided by a team of health care professionals, including palliative care specialists, nurses and physicians assistants trained in palliative care, religious workers such as chaplains, social workers, pharmacists, counselors, and specialists in complementary therapy. Early introduction of palliative care as a routine component of a comprehensive therapeutic strategy, provided by a team of palliative care experts, is optimal in patients with pancreatic cancer. The goal of this approach is to improve quality of life throughout the trajectory of the patient’s illness, and will support improved symptom control and reduced requirements for aggressive treatment at the end of life.31
Effective and Patient-centered Communication
Palliative care addresses three major domains in the treatment of pancreatic cancer patients: providing physical, emotional, and spiritual comfort; improving patient, family, and professional communication focused on achievable goals for care and the decision-making that follows; and supporting coordinated, communicated, continuity of care and support for practical needs of both patients and families in all settings during the patient’s illness.
Effective communication is the cornerstone of care in patients with advanced pancreatic cancer, and includes topics such as the meaning of true informed consent, trade-offs, burden benefits, redirection of hope and energy, legacies, and the beginning of closure. Early integration of palliative care in pancreatic cancer focuses on supporting patients and family, facilitating improved QOL during the course of the disease, and reducing patient and family inclinations to solely focus on end-of-life issues.
To foster clinicians’ end-of-life discussions with their patients, researchers from Dana-Farber Cancer Institute and Ariadne Labs have developed the Serious Illness Conversation Guide32 to help train and support clinicians when discussing goals of care. This short simple guide will assist the clinician in discussing the patient’s understanding of their illness, preference for information and for family involvement in care, personal life goals, fears and anxieties, and acceptable trade-offs.
*The Serious Illness Conversation Guide is updated periodically, please reference https://www.ariadnelabs.org/resources/downloads/ for the most up to date version.
In general, QOL research in patients with pancreatic cancer lags behind QOL research in many other disease areas. The majority of patients with pancreatic cancer are faced with a fatal illness with many distressing symptoms. In addition, treatments for this disease are multimodal and aggressive, many potentially having a significant and overall negative impact on QOL, with limited impact on survival. Providing palliative care to patients early in the course of disease will support improved care. While palliative care services have been increasingly utilized in the United States over the past decade, significant barriers to effective palliative care are real.33,34 Clinicians experience constraints on clinic time available for palliative care, and reimbursement is often lacking. Furthermore, the Affordable Care Act does not address palliative care as a distinct service from hospice care.35 Clinicians who care for patients with any cancer, including pancreatic cancer, must strive for new legislation regarding reimbursement for palliative care services. The increased demand for palliative care has outstripped the availability of clinicians specializing in this area, resulting in a shortage of these critical services. Quill and colleagues suggest a model of delivering palliative care through both specialists and generalists, with adequate palliative care training for every clinician who cares for patients who will benefit from these approaches. In this model, patients with refractory symptoms would be referred to clinicians specializing in palliative care.36 Implications of this model include the restructuring of all nursing and medical school curricula to include key concepts of palliative care, as well as funding for the palliative care education of health care providers. This education must include effective communication skills to ensure that patients and family members have a complete understanding of the enormous benefits that effective, proactive palliative care can provide.
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- McKenna SM, Eatock M. The medical management of pancreatic cancer: a review. Oncologist. 2003;8(2):149-160.
- Moss RA, Lee C. Current and emerging therapies for the treatment of pancreatic cancer. Onco Targets Ther. 2010;3:111-127.
- Kelsen DP, Portenoy RK, Thaler HT, et al. Pain and depression in patients with newly diagnosed pancreas cancer. J Clin Oncol. 1995;13(3):748-755.
- Lillemoe KD. Palliative therapy for pancreatic cancer. Surg Oncol Clin N Am. 1998;7(1):199-216.
- Sauter PK, Coleman J. Pancreatic cancer: a continuum of care. Semin Oncol Nurs. 1999;15(1):36-47.
- Crippa S, Dominguez I, Rodriguez J, et al. Quality of life in pancreatic cancer: analysis by stage and treatment. J Gastrointest Surg. 2008;12(5):783-793; discussion 793-794.
- Wilson H, Butler LJ, Repetto G, et al. Providing care to patients with pancreatic cancer; a retrospective chart review. Can Oncol Nurs J. 2000;10(4):134-138.
- Lazenby JM, Saif MW. Palliative care from the beginning of treatment for advanced pancreatic cancer. Highlights from the 2010 ASCO Gastrointestinal Cancers Symposium. JOP. 2010;11(2):154-157.
- Brescia FJ. Palliative Care in Pancreatic Cancer. Cancer Control. 2004;11(1):39-45.
- Peppercorn JM, Smith TJ, Hleft PR, et al. American Society of Clinical Oncology Statement: Toward individualized care for patients with advanced cancer. J Clin Oncol. 2011;29(6):755-760.
- National Consensus Project, 2014.
- Bruera E, Hui D. Integrating supportive and palliative care in the trajectory of cancer: establishing goals and models of care. J Clin Oncol. 2010;28(25):4013-4017.
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- Francis W. Peabody to Harvard students on October 21, 1925. Personal communication.
- Cassel CK, Foley KM. Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine. Milbank reports. http://www.milbank.org/uploads/documents/endoflife/ accessed online March 10, 2016.
- National Comprehensive Cancer Network (2016). NCCN Clinical Practice Guidelines in Oncology: Palliative Care. Accessed February 28, 2016. http://www.nccn.org/professionals/physician_gls/pdf/palliative.pdf
- Smith TJ, Temin S, Alesi E, et al. American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care Into Standard Oncology Care. J Clin Oncol. 2012;30(8):880-887.
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- Cherny N, Catane R, Schrijvers D, et al. European Society of Medical Oncology (ESMO). Program for the Integration of Oncology and Palliative Care: a 5-year review of the Designated Centers Incentive Program. Ann Oncol. 2010;21(2):362-369.
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
- Bakitas M, Lyons KD, Hegel M, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA. 2009;302(7):741-749.
- Zimmermann C, Riechelmann R, Krzyzanowska M, et al. Effectiveness of specialized palliative care: a systematic review. JAMA. 2008;299(14):1698-1709.
- Bruera E, Yennurajalingam S. Palliative care in advanced cancer patients: How and when? Oncologist. 2012;17(2):267-273.
- Dalal S, Bruera S, Hui D, et al. Use of Palliative Care Services in a Tertiary Cancer Center. Oncologist. 2016;21(1):110-118.
- Serious Illness Conversation Guide. Dana-Farber Cancer Institute and Ariadne Labs. https://www.ariadnelabs.org/resources/downloads/
- Ramchandran K, Tribett E, Dietrich B, et al. Integrating Palliative Care into Oncology: A Way Forward. Cancer Control. 2015;22(4):386-395.
- Hui D, Kim YJ, Park JC, et al. Integration of Oncology and Palliative Care; a systematic review. Oncologist. 2015;20(1):77-83.
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