When the Gold Standard of Care Is Not Available

Abstract

A diagnosis of cancer and subsequent therapies (surgery, radiation, chemotherapy) are known to result in negative physical symptoms (eg, pain, nausea, fatigue, shortness of breath, weight loss). In addition to physical symptoms, increased depression and anxiety are also common. These symptoms negatively impact both the patient diagnosed with cancer and their family caregivers. The combination of cancer therapies and unpleasant side-effects can be overwhelming for patients and families to navigate. Thankfully, supportive palliative care has been shown to improve the overall experience of those along this journey.1–3 In fact, specialty palliative care is considered the “gold standard” for all patients with advanced cancer.4 Unfortunately, this service is not readily available to all. The American Society of Clinical Oncology (ASCO) and the National Cancer Institute (NCI) recommend that cancer treatment be delivered concurrently with palliative care for patients with advanced cancer.4 This recommendation includes the use of a specialty interdisciplinary palliative care team early in the disease trajectory for both the patient and their family.4 Palliative care is defined as a holistic care approach provided by an interdisciplinary team to manage a patient’s physical, psychosocial, emotional, and spiritual needs.5,6 Over the past few years, progress has been made to include palliative care services alongside cancer care, in some areas, however, not all patients receive this benefit. Hui et al7 reported that 95% of NCI-designated oncology centers offered outpatient specialty palliative care services. While less than half (40%) of non-NCI-designated cancer centers offered these same services. NCI-designated cancer centers make up approximately 30% of US Hospitals.7 Even though specialty palliative care programs within cancer centers have increased, access remains a challenge at non-NCI, resource-deficit, or smaller cancer centers. Leaving most patients without access to these critical advanced services. With these restrictions and limited access to specialty services, how then are we to provide this critical service to our patients and families receiving care at most cancer care centers across the nation? One answer may be primary palliative care. Primary palliative care is a holistic approach to care by all care providers that incorporates palliative care principles within chronic disease management (eg, cancer) utilizing collaboration with specialty palliative care providers when needed.8,9 The focus is on addressing palliative care competences, such as symptom and pain management and goals of care conversations (eg, my choices my wishes). Support and training for primary palliative care is available to all primary care providers through national palliative care organizations (eg, Center to Advance Palliative Care, the Hospice and Palliative Nurses Association, and the American Academy of Hospice and Palliative Medicine). The Center to Advance Palliative Care (https://www.capc.org) offers training for all members of the health care team with a focus on tools for practice and training. The Hospice and Palliative Nurses Association (https://advancingexpertcare.org) provides education to all members of the nursing team that focuses on communication and care of patients with advanced disease. Lastly, the American Academy of Hospice and Palliative Medicine (http://aahpm.org) provides training with a primary focus on doctors and advanced care providers. In summary, the gold standard of care is to provide concurrent palliative care for patients with advanced cancer based upon the recommendations of ASCO and NCI. Additionally, the benefits of palliative care for cancer patients and families have been realized through evidence. However, specialty palliative care teams remain a scarce resource for many non-NCI oncology centers. To combat this issue, basic palliative care training and education should be provided to all oncology care providers so that primary palliative care can be integrated to fill this gap for patients and families. Financial Disclosure The authors have no funding or conflicts of interest to disclose.