Epidemiologic research shows that hepatocellular carcinoma (HCC) is the fastest growing cause of cancer-related death in the United States.1 It affects predominantly people age 40 years or older2 and is approximately 3 times more common in men than in women.1
Patients with chronic liver disease and cirrhosis caused by chronic hepatitis B or C virus infections and those with alcoholic liver disease are at increased risk for HCC developing.2,3 Late detection complicates the management of HCC; however, approximately 40% of people have advanced disease at diagnosis, when limited therapeutic options remain.4
Infectious Disease Advisor discussed the latest insights about integrating palliative care into the treatment of patients with HCC with Christopher D. Woodrell, MD, assistant professor in the Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, and Lissi Hansen, RN, PhD, professor at the Oregon Health and Science University School of Nursing in Portland.
Infectious Disease Advisor: Why are patients with HCC especially suited for palliative care?
Christopher D. Woodrell, MD: Palliative care is specialized, interdisciplinary care for people living with a serious illness that focuses on improving quality of life.5 It is appropriate for any stage of illness, and at any age. Patients with HCC, and older adults in particular,6 face unique types of challenges. Many of these patients have also been living with chronic liver disease for some time. This leads to added symptom burden, prognostic uncertainty, and a complex series of potential treatments, including surgery, liver transplant, interventional radiology procedures, chemotherapy and immunotherapy, and radiation therapy. Older adults often have other medical problems that may limit their options or complicate their treatment course.7 Palliative care offers an additional layer of support to help these patients and their families navigate HCC diagnosis and treatment and maintain an acceptable quality of life.
Infectious Disease Advisor: How much is known about the specific palliative care needs of patients with HCC?
Dr Woodrell: We know very little about the specific palliative care needs of patients living with HCC and their families and need more research in this area. There have been a few publications on the experience of people with HCC with hospice,8 but hospice care is available only for people who are close to the end of their life. The work of my colleague, Lissi Hansen, PhD, RN, has shown that patients with HCC and their families face significant burden as a consequence of symptoms and the distressing uncertainty associated with the treatments and trajectory of HCC.9 More research is needed to help us integrate palliative care services into the landscape of HCC treatment, so that we can best address palliative care needs of both patients and families — symptom management, psychosocial support, and assistance with treatment decision making — throughout their entire experience.
Infectious Disease Advisor: What type of research still needs to be conducted to bridge this knowledge gap?
Dr Woodrell: Clinical trials testing different models of palliative care delivery would help us better understand how to provide this type of care. Examples of possible models to test include both inpatient and outpatient palliative care consultations, palliative care integrated into the HCC-treating practices, palliative care delivered at specific points in the trajectory of HCC, and basic palliative care delivery by HCC specialist providers.
Infectious Disease Advisor: What are the main goals of palliative care interventions for patients with HCC?
Dr Woodrell: The goals of palliative care interventions for people with HCC would be to provide psychosocial support, specialized symptom management, advance care planning and care coordination, and help with therapeutic decision making. We know that, because of HCC treatment complexity, care is best delivered through multidisciplinary tumor boards.10 Integrating palliative care into this management model would complement HCC-directed treatment delivery and ensure good communication and collaboration between palliative care and HCC-treating clinicians.
Infectious Disease Advisor: Can palliative care improve the overall outcomes of patients with HCC?
Dr Woodrell: Studies of patients with other types of cancer have shown that palliative care has the potential to help these patients live better and longer.11,12 The 2017 trial published by Jennifer Temel, MD, and colleagues showed that early palliative care intervention for patients with gastrointestinal cancers improved their quality of life.13 However, HCC is distinct from other types of cancers because of underlying liver disease, which leads to increased symptom burden, additional prognostic uncertainty, and a uniquely complex series of treatments. Therefore, we need more research to optimize the timing and content of palliative care interventions that would provide maximal benefit to patients living with HCC and their families.
Infectious Disease Advisor: Which aspects of HCC are the cause of greatest burden for patients and their families?
Lissi Hansen, RN, PhD: My research in this area has shown that patients with HCC and their families need more information about what to expect while living with HCC and undergoing treatment. There is a great deal of uncertainty associated with prognosis and treatment options for HCC. Whether someone qualifies for HCC therapies like surgery, transplant, or liver-directed therapies is a complex phenomenon and can change unpredictably over time based on progression of the cancer, worsening of the liver disease, severity of other chronic illnesses, or even social factors that have an impact on someone’s candidacy for transplant. While the highly specialized and experienced providers caring for these patients can provide information about mathematical probabilities of treatment success or prognosis, patients with HCC and their families struggle with translating these numbers into what life will look like for them while living with HCC. Unpredictability of the disease and its treatments is, therefore, a uniquely burdensome aspect of living with HCC. I have performed many interviews with patients and families and the theme of uncertainty consistently emerges as a source of distress.
Infectious Disease Advisor: How can early palliative care in patients with HCC help alleviate some of the burdensome aspects of this disease?
Dr Hansen: HCC care is delivered at many centers by multidisciplinary tumor boards/teams, however, models that integrate palliative care into the team have not been described. Palliative care specialists could contribute to the multidisciplinary HCC team by initiating discussions about advance care planning and establishing a relationship among providers, patients, and their families early in the course of illness. Furthermore, specialized symptom management, decision-making support, psychosocial support, care coordination, and continuity of care could be provided consistently as the disease progresses. This would mean better and longer benefits for patients with HCC and their families, including identification of symptoms and other problems before they evolve into crises.
Infectious Disease Advisor: What are some of the challenges of integrating palliative care into the treatment plan for patients with HCC?
Dr Hansen: Palliative care can be offered at any stage of a serious illness,5 whereas hospice is provided to people with limited prognosis, who are no longer pursuing life-prolonging treatments. However, many people equate palliative care with hospice — care that is delivered only at the end of someone’s life. Therefore, HCC-treating providers may not always feel comfortable communicating to patients and families about palliative care and may be uncertain about the appropriate time to initiate such conversations. Providers may also fear that they will upset patients and/or families and take away any hope patients and/or families have if they introduce palliative care. Time constraints may also play a role in providers’ ability to discuss palliative care during treatment visits. Furthermore, with the rising incidence of HCC14 combined with the shortage of providers who specialize in palliative care,15 integrating palliative care into HCC care may continue to be a challenge.
Infectious Disease Advisor: How can some of these challenges be overcome?
Dr Hansen: One solution is to ensure that all healthcare providers have training to address the basic palliative care needs of their patients, and in those cases when additional support is needed, can refer patients and families for specialty-level palliative care consultations.
- El-Serag HB, Kanwal F. Epidemiology of hepatocellular carcinoma in the United States: Where are we? Where do we go?Hepatology. 2014;60(5):1767-1775.
- El-Serag HB. Hepatocellular carcinoma. N Engl J Med. 2011;365(12):1118-1127.
- Gosalia AJ, Martin P, Jones PD. Advances and future directions in the treatment of hepatocellular carcinoma. Gastroenterol Hepatol (N Y). 2017;13(7):398-410.
- Cidon EU. Systemic treatment of hepatocellular carcinoma: past, present and future. World J Hepatol. 2017;9(18):797-807.
- Kelley AS, Morrison RS. Palliative care for the seriously ill. N Engl J Med. 2015;373(8):747-755.
- Woodrell CD, Hansen L, Schiano TD, Goldstein NE. Palliative care for people with hepatocellular carcinoma, and specific benefits for older adults. Clin Ther. 2018;40(4):512-525.
- Williet N, Clavel L, Bourmaud A, et al. Tolerance and outcomes of sorafenib in elderly patients treated for advanced hepatocellular carcinoma. Dig Liver Dis. 2017;49(9):1043-1049.
- Sanoff HK, Chang Y, Reimers M, Lund JL. Hospice utilization and its effect on acute care needs at the end of life in Medicare beneficiaries with hepatocellular carcinoma. J Oncol Pract. 2017;13(3):e197-e206.
- Hansen L, Rosenkranz SJ, Vaccaro GM, Chang MF. Patients with hepatocellular carcinoma near the end of life: a longitudinal qualitative study of their illness experiences. Cancer Nurs. 2015;38(4):E19-E27.
- Agarwal PD, Phillips P, Hillman L, et al. Multidisciplinary management of hepatocellular carcinoma improves access to therapy and patient survival. J Clin Gastroenterol. 2017;51(9):845-849.
- 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 MA, Tosteson TD, Li Z, et al. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the ENABLE III randomized controlled trial. J Clin Oncol. 2015;33(13):1438-1445.
- Temel JS, Greer JA, El-Jawahri A, et al. Effects of early integrated palliative care in patients with lung and GI cancer: a randomized clinical trial. J Clin Oncol. 2017;35(8):834-841.
- Rahib L, Smith BD, Aizenberg R, et al. Projecting cancer incidence and deaths to 2030: the unexpected burden of thyroid, liver, and pancreas cancers in the United States. Cancer Res. 2014;74(11):2913-2921.
- Lupu D, American Academy of Hospice, Palliative Medicine Workforce Task Force. Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage. 2010;40(6):899-911.