Esme Finlay

Factors Determining Dissemination of Results and Uptake of Genetic Testing in Families with Known BRCA1/2 Mutations

BACKGROUND Uptake of genetic testing remains low, even in families with known BRCA1 and BRCA2 (BRCA1/2) mutations, despite effective interventions to reduce risk. We report disclosure and uptake patterns by BRCA1/2-positive individuals to at-risk relatives, in the setting of no-cost genetic counseling and testing. METHODS Relatives of BRCA1/2-positive individuals were offered cost-free and confidential genetic counseling and testing. If positive for a BRCA1/2 mutation, participants were eligible to complete a survey about their disclosure of mutation status and the subsequent uptake of genetic testing by at-risk family members. RESULTS One hundred and fifteen of 142 eligible individuals responded to the survey (81%). Eighty-eight (77%) of those surveyed disclosed results to all at-risk relatives. Disclosure to first-degree relatives (FDRs) was higher than to second-degree relatives (SDRs) and third-degree relatives (TDR) (95% vs. 78%; p < 0.01). Disclosure rates to male versus female relatives were similar, but reported completion of genetic testing was higher among female versus male FDRs (73% vs. 49%; p < 0.01) and SDRs (68% vs. 43%; p < 0.01), and among members of maternal versus paternal lineages (63% vs. 0%; p < 0.01). Men were more likely than women to express general difficulty discussing positive BCRA1/2 results with at-risk family members (90% vs. 70%; p = 0.03), while women reported more emotional distress associated with disclosure than men (48% vs. 13%; p < 0.01). DISCUSSION We report a very high rate of disclosure of genetic testing information to at-risk relatives. However, uptake of genetic testing among at-risk individuals was low despite cost-free testing services, particularly in men, SDRs, and members of paternal lineages. The complete lack of testing among paternally related at-risk individuals and the lower testing uptake among men signify a significant barrier to testing and a challenge for genetic counselors and physicians working with high-risk groups. Further research is necessary to ensure that family members understand their risk and the potential benefits of genetic counseling.

Pain in Cancer Survivors

Pain is a common problem in cancer survivors, especially in the first few years after treatment. In the longer term, approximately 5% to 10% of survivors have chronic severe pain that interferes with functioning. The prevalence is much higher in certain subpopulations, such as breast cancer survivors. All cancer treatment modalities have the potential to cause pain. Currently, the approach to managing pain in cancer survivors is similar to that for chronic cancer-related pain, pharmacotherapy being the principal treatment modality. Although it may be appropriate to continue strong opioids in survivors with moderate to severe pain, most pain problems in cancer survivors will not require them. Moreover, because more than 40% of cancer survivors now live longer than 10 years, there is growing concern about the long-term adverse effects of opioids and the risks of misuse, abuse, and overdose in the nonpatient population. As with chronic nonmalignant pain, multimodal interventions that incorporate nonpharmacologic therapies should be part of the treatment strategy for pain in cancer survivors, prescribed with the aim of restoring functionality, not just providing comfort. For patients with complex pain issues, multidisciplinary programs should be used, if available. New or worsening pain in a cancer survivor must be evaluated to determine whether the cause is recurrent disease or a second malignancy. This article focuses on patients with a history of cancer who are beyond the acute diagnosis and treatment phase and on common treatment-related pain etiologies. The benefits and harms of the various pharmacologic and nonpharmacologic options for pain management in this setting are reviewed.

Making Difficult Discussions Easier: Using Prognosis to Facilitate Transitions to Hospice†‡§

Patients with advanced cancer face difficult decisions regarding their treatment, and many will need to make difficult choices about end‐of‐life care because although cancer‐directed therapies are increasingly available, few provide a cure. High‐quality cancer care includes access to palliative care throughout the cancer care continuum, and increasing evidence suggests that timely enrollment in hospice can increase quality of life for patients dying from cancer. Therefore, clinicians must learn to recognize patients who are hospice‐eligible and to develop prognostication and communication skills that enable honest provider‐patient dialogue about end‐of‐life options. In this article, the authors review available tools for prognostication in advanced cancer and present a method for discussing prognosis by using the SPIKES acronym. In addition, by using patient‐identified goals and service needs, the authors recommend a method for making a hospice referral after disclosure of poor prognosis. CA Cancer J Clin 2009;59:250‐263. ? 2009 American Cancer Society, Inc.

Do phase 1 patients have greater needs for palliative care compared with other cancer patients

Phase 1 oncology trial participants often are excluded from hospice. However, it is not known whether they would benefit from hospice services. The objectives of the current study were to define the palliative care needs of these patients and to determine whether their needs are greater than those of other cancer patients.

Palliative Oncologists: Specialists in the Science and Art of Patient Care

DOI: 10.1200/JCO.2014.60.3274 Case Vignette “We’ve been waiting for you to come on the oncology service,” the oncology fellow said, as the resident and nurse practitioner on service looked on. “We have a really challenging case.” Our patient was a frail 77-year-old woman with unresectable pancreatic adenocarcinoma, saddle pulmonary embolus, protein calorie malnutrition, hepatitis C, and recurrent infections, all of which had resulted in a lengthy hospital stay. Her cancer had progressed despite two lines of chemotherapy. She wanted more treatment, but had been told she was too weak. In our first meeting, she told me that her goal was “to get strong enough for more chemotherapy.” She had interpreted the previous oncology attending’s statement about her fitness for chemotherapy as a challenge, and thought, “If I can get stronger, I can get more.” Knowing and trusting my colleague, I imagine his statement was meant as a stepping stone toward a transition to hospice. Her family fiercely defended her desire for rehabilitation as well (“Don’t take away her hope,” they had said), so she remained in a hospital-based limbo, too weak for physical therapy and without sufficient understanding of her prognosis to allow a seamless transition to hospice. As a dual board–certified medical oncologist and palliative care physician, I respected her hopefulness and recognized the challenges that I faced as a result of the complex and nuanced conversations that had occurred before I became involved in her care. I also recognized her profound suffering and that of her family, both because of my conversations with them and because of the heaviness I felt in my heart when entering her room. I suspect that every oncologist knows a version of the above scenario, and knows that heaviness of heart, too. As physicians, we are often most comfortable in the medical and fact-based realms. However, in my palliative care training, I was taught to listen to the so-called limbic music in a room to try to identify the causes of suffering. Often the solution in a difficult clinical encounter lies in addressing emotional and spiritual needs as well as physical ones. Our team aggressively managed the patient’s pain and nausea and then explored her suffering. As a member of a three-generation ranching family, she had been physically active until her diagnosis, and felt betrayed by her body. In the hospital, without her daily dose of open sky, she felt trapped. She did not have a will and worried about who would run the ranch after she passed. Her sons had a contentious relationship and often disagreed about how to care for her. She was overwhelmed and, frankly, not ready to die. She suffered in many realms—physical, emotional, interpersonal, financial and existential— and her suffering affected her decision making. By identifying and addressing the causes of her suffering in the context of our goals-of-care discussions, we helped her to understand that she was not going to regain the physical ability to run the ranch, but that she might be able to see it again, that we could begin to address some of her financial and relationship concerns, and that those things were possible without more chemotherapy. Before her death in the hospital, she had completed a medical power of attorney, had met with her sons and a family lawyer to make a will, and had the opportunity to grieve openly with her sons about her anticipated death. From an educational perspective, an oncology fellow, resident, and nurse practitioner learned to recognize and assess “total pain,” Dame Cicely Saunder’s concept of suffering that encompasses physical, psychological, social, and spiritual domains. This vignette illustrates how palliative oncology experts can influence patient care and education in meaningful ways, and also how palliative care training adds a different dimension to the core skills that all oncologists use.

Filling the Gap: Creating an Outpatient Palliative Care Program in Your Institution

Well-designed, randomized trials demonstrate that outpatient palliative care improves symptom burden and quality of life (QOL) while it reduces unnecessary health care use in patients with cancer. Despite the strong evidence of benefit and ASCO recommendations, implementation of outpatient palliative care, especially in community oncology settings, faces considerable hurdles. This article, which is based on published literature and expert opinion, presents practical strategies to help oncologists make a strong clinical and fiscal case for outpatient palliative care. This article outlines key considerations for how to build an outpatient palliative care program in an institution by (1) defining the scope and benefits; (2) identifying strategies to overcome common barriers to integration of outpatient palliative care into cancer care; (3) outlining a business case; (4) describing successful models of outpatient palliative care; and (5) examining important factors in design and operation of a palliative care clinic. The advantages and disadvantages of different delivery models (e.g., embedded vs. independent) and different methods of referral (triggered vs. physician discretion) are reviewed. Strategies to make the case for outpatient palliative care that align with institutional values and/or are supported by local institutional data on cost savings are included.