Annals of Internal Medicine | 2019
Would You Refer This Patient With Cancer to a Palliative Care Specialist?
Abstract
About Beyond the Guidelines Beyond the Guidelines is a multimedia feature based on selected clinical conferences at Beth Israel Deaconess Medical Center (BIDMC). Each educational feature focuses on the care of a patient who falls between the cracks in available evidence and for whom the optimal clinical management is unclear. Such situations include those in which a guideline finds evidence insufficient to make a recommendation, a patient does not fit criteria mapped out in recommendations, or different organizations provide conflicting recommendations. Clinical experts provide opinions and comment on how they would approach the patient s care. Videos of the patient and conference, the slide presentation, and a CME/MOC activity accompany each article. For more information, visit www.annals.org/GrandRounds. Series Editor, Annals: Deborah Cotton, MD, MPH Series Editor, BIDMC: Risa B. Burns, MD, MPH Series Assistant Editors: Eileen E. Reynolds, MD; Gerald W. Smetana, MD; Anjala Tess, MD, Howard Libman, MD This article is based on the Department of Medicine Grand Rounds conference held on 1 November 2018. Ms. F is a 71-year-old woman who is receiving treatment for metastatic neuroendocrine carcinoma. In 2005, she had successful treatment for locally advanced anal cancer. In 2017, magnetic resonance imaging and enterography performed for new symptoms revealed several liver lesions; biopsy showed neuroendocrine carcinoma. Chemotherapy was instituted rapidly for this high-grade cancer. Ms. F received 9 cycles of carboplatin and etoposide through March 2018, with good response. Lesions that did not respond were treated with radiofrequency ablation in April. In May, magnetic resonance imaging showed disease recurrence, resulting in 3 more chemotherapy cycles. In August, a computed tomography scan performed for abdominal discomfort showed disease progression. Ms. F knows that she will be starting a new chemotherapy regimen. Her course also has been complicated by an admission for enterococcal sepsis in June, as well as by transfusion-dependent anemia. Ms. F s weight is stable; her functional status is good, and she enjoys going out with her husband. She recently visited friends on Cape Cod. Ms. F is a retired flight attendant. She has a close relationship with her husband and a group of good friends, with whom she is open about her prognosis. Her medical record provides no indication that she has expressed her preferences regarding end-of-life (EOL) care during her oncology visits. During Ms. F s hospitalization for sepsis, the hospitalist noted that her code status was full codepresumed. Ms. F had filled out a health care proxy form during an annual primary care visit in 2016, when she was well; her husband is her health care proxy. On physical examination on the day of her interview, Ms. F has normal vital signs, a body mass index of 23.5 kg/m2, a soft abdomen, and no jaundice. She has a score of 0 on the pain scale and 100 on the Karnofsky Performance Scale. Her hemoglobin level is 8.4 g/dL. Ms. F s Story I have no pain whatsoever. I m very lucky to feel, you know, just good. The energy level is great this week; only, with the chemo, I feel fatigued. I don t have any other symptoms. I feel that if there is a breakthrough that would help my cancer, I would be told about it. So, my chemo has worked so far. Two of the largest lesions were 22 cm and 16 cm, and they both had shrunk to 1 cm; so, it was wonderful. It was working wonderfully, but then I had to stop for 6 weeks because I had an ablation, and when I went back to it, I had some new lesions, and now I am told that they ve enlarged. So, this plan B: I don t know what to expect today. I was told my cancer is terminal, and if I was lucky, I had a year to live. That was since last October, and it s now August, and I m still here having a good time. So, I only think positive, very positive. What the future holds, I m not sure yet. I beat it once in 06. I only thought about living, even then. If you think about doom and gloom, then what good is your day? Every day is a good day; every day is a blessing, and I ve been very blessed with 12 extra years. I want to have another 12. Dr. Reynolds, you are the first person who has mentioned to me about my care if my cancer gets very serious and near the end. Whoever is the best personand it sounds to me like it would be the palliative person, who works on that continuouslybut if my primary doctor or oncologist talked to me about it, that would be fine also. I believe thinking about doom and gloom is wasted energy, and since my last cancer I tell people we all worry about things, but you worry a lot less about unimportant things when you ve got cancer. I say it s wasted energy, and it isI mean, using my energy to have a good time in life for however long that may be. I think that anyone who just sits and thinks about death will die sooner, because what good is it? I don t know what the future will bring, but when it does come, I will deal with it. See the Patient Video to view the patient telling her story. Context, Evidence, and Guidelines Although the practice of palliative care has existed in some form for centuries, only during the past decades has the specialty of palliative medicine become defined, organized, and accredited in the United States. Board certification for the specialty of Hospice and Palliative Medicine was approved by the American Board of Medical Specialties in 2006. Palliative care providers have expertise in communicating about advanced care planning and in managing symptoms associated with advanced disease, such as cancer, heart failure, lung disease, and cirrhosis. The National Consensus Project for Quality Palliative Care recommends multidisciplinary teams to address social, cultural, spiritual, and ethical aspects of care, as well as providing medical services (1). Palliative care services have expanded rapidly since 2006; in the past 12 years, the number of palliative care teams expanded by 164%, and more than 60% of U.S. hospitals with more than 50 beds now have them (2). However, substantial shortages of trained providers remain. Recent studies have shown that when care structures include a palliative care team, patients have higher quality of life (QoL) and better outcomes of care, and they may even live longer. The first and perhaps most notable study was a randomized trial of 151 patients with recently diagnosed advanced nonsmall cell lung cancer (3). Patients were randomly assigned to receive standard oncology care with early palliative care consultation or oncology care with palliative care at the discretion of their oncologist. The intervention was an initial palliative care assessment with monthly follow-up. Patients in the palliative care group had significantly higher QoL, fewer depressive symptoms, less aggressive EOL care, more time in hospice, a better understanding of their prognosis, and less chemotherapy. Perhaps most surprising is that they lived 2.7 months longer, on average, than patients in the control group. On the basis of this study and 6 other randomized trials showing benefit, in 2012 the American Society of Clinical Oncology (ASCO) published a provisional clinical opinion (a recommendation short of a guideline that ASCO publishes when it notes that a field is rapidly evolving) stating that it is the Panel s expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden (4). An accompanying National Cancer Institute review countered that the field was too young for a guideline and noted concern regarding whether Temel and colleagues results (3) were reproducible and generalizable to a heterogeneous population with cancer (4). In 2016, ASCO released a formal guideline, Integration of Palliative Care Into Standard Oncology Care: ASCO Clinical Practice Guideline Update, updating the 2012 provisional clinical opinion (5). The ASCO expert panel reviewed 9 additional randomized trials, 1 quasi-experimental study, and newly published analyses of 6 randomized trials reviewed previously (including the study by Temel and colleagues [3]). The panel s recommendations were based on this evidence review as well as on clinical experience. For areas in which evidence was lacking, the panel used informal consensus in writing the guideline. Here, the focus is on the section of the ASCO guideline that addresses the following question: Should palliative care concurrent with oncology care be standard practice? The guideline s key recommendation is as follows: Patients with advanced cancer, whether inpatient or outpatient, should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Clinical Questions To structure a debate between our 2 discussants, we mutually agreed on the following key questions to consider when applying this guideline to clinical practice and to Ms. F in particular. 1. The literature shows a clear benefit to early palliative care for patients with advanced cancer. To what do you attribute this benefit? 2. What are the barriers to providing palliative care to all patients with advanced cancer? 3. What is the role of the palliative care specialist versus the oncologist who has skills in palliative care (primary palliative care)? Discussion A Palliative Care Specialist s Viewpoint (Dr. Mary K. Buss) Question 1: The literature shows a clear benefit to early palliative care for patients with advanced cancer. To what do you attribute this benefit? Palliative care is specialized care for patients with serious illness, delivered by an interdisciplinary team, that aims to maximize QoL. The impressive benefits, noted earlier, have prompted further investigation into the components of palliative care, especially which aspects are associated with beneficial outcomes. Qualitative analyses of the content of