By Anna Greene, PhD, NETRF Director of Research
A recent study by Suriya Baskar, MD, and Udhayvir Singh Grewal, MD, published in the Journal of the National Comprehensive Cancer Network, sheds light on an often-overlooked yet vital aspect of the neuroendocrine tumor (NET) journey: how we care for patients when cure is no longer possible and comfort becomes the primary goal.
Why Palliative Care Matters for NET Patients
NETs are a complex and increasingly common group of cancers. Because their symptoms can be vague and easily misattributed—think fatigue, abdominal pain, or digestive issues—many patients are diagnosed at later stages. While some can live with metastatic NETs for years, they may experience debilitating symptoms that drastically reduce quality of life. That’s where palliative care comes in.
Palliative care is a specialized medical service focused on relieving the symptoms and stress of serious illness. It’s not just for the final days or weeks of life—it can and should be introduced much earlier. For patients with NETs, palliative care can help manage symptoms like pain, nausea, diarrhea, and emotional distress, while also supporting families and caregivers.
What the New Study Tells Us
Researchers analyzed data from over 7,000 adult patients with NETs who passed away in hospitals between 2016 and 2020. The findings were striking:
- Only 60% received a palliative care consultation during their final hospitalization.
- Patients who did receive palliative care were more likely to have do-not-resuscitate (DNR) orders in place and less likely to undergo invasive treatments like mechanical ventilation or vasopressors, invasive measures that may prolong life but not necessarily improve quality of life at the end of life (EoL).
- These patients also had shorter hospital stays and lower hospital costs.
Palliative care not only enhances dignity at the end of life but also reduces unnecessary emotional and financial suffering and burden for families.
Disparities in Care: A Call to Action
Perhaps most concerning were the disparities uncovered. Black patients were:
- Less likely to receive palliative care consultations.
- Less likely to have DNR code status.
- More likely to undergo aggressive interventions at EoL.
These findings reflect broader issues in the U.S. healthcare system, where access to quality EoL care is not always equitable. Reasons may include lack of access, cultural beliefs, or mistrust of the healthcare system, among others.
At NETRF, we believe every patient, regardless of race, ethnicity, background, or income, deserves compassionate, personalized care at every stage of their illness. Addressing these disparities is a moral and medical imperative.
What Needs to Change
- Earlier Palliative Care Conversations: Providers should introduce palliative care not as a last resort, but as a standard part of care for advanced NETs.
- Education and Awareness: Patients and families need clear, culturally sensitive information about what palliative care is (and isn’t).
- Systemic Change: Hospitals should adopt policies that prompt automatic palliative care referrals for patients with advanced NETs.
- Equity-Focused Research: We need more data on how to tailor EoL care to meet the needs of diverse populations.
Empowering Patients and Families
If you or a loved one is living with a NET diagnosis, don’t wait for a crisis to ask about palliative care. It’s about improving your quality of life at any stage. It’s about making sure your goals, your values, and your comfort come first.
You have the right to compassionate care. Let’s make sure everyone gets it.
Thrivership: Defining Life Beyond Diagnosis
At NETRF, “Thrivership” is defined as “the state of knowing what you need in your personal journey to thrive after cancer treatment, and what survivorship looks like for you.” Through our monthly Thrivership Series, we offer short, inspiring, and educational videos featuring topics from mental health and symptom management to finding purpose and coping with uncertainty, designed to support NET patients and caregivers in living well beyond their diagnosis. Watch the Thrivership video Palliative Care is a Resource for Now to get some tips for exploring palliative care during your NET journey.
NETRF also has a recent NETWise podcast episode that covers how to manage symptoms.
Visit our NET Knowledge Center for education, resources and advice on living fully with neuroendocrine cancer.