Rebecca A. Kirch

Early Specialty Palliative Care — Translating Data in Oncology into Practice

For most patients with serious illness, palliative care is provided only near the end of life. The authors review studies showing that earlier palliative care can improve quality of life and reduce health care costs and argue that such care should be standard in serious illness.

Reducing the toxicity of cancer therapy: Recognizing needs, taking action

Our understanding of the biology of cancer and the application of this knowledge to cancer treatment has greatly outpaced what we know of the biology underlying the symptoms and toxic effects that therapies produce. These adverse effects of therapy cause substantial discomfort and distress to patients and their families, limit treatment tolerability and can persist indefinitely in post-treatment survivorship. Despite these concerns, little research effort is targeted at documenting the nature of these effects. Similarly, limited efforts are being made in the drug-development arena to identify or develop treatments that might prevent or reduce toxicities. A panel of clinicians and researchers as well as representatives from advocacy groups, federal agencies and the pharmaceutical industry was convened to identify gaps in cancer treatment toxicity research and to provide direction for future action. With an emphasis on coordinating multidisciplinary efforts, this panel has presented a strategy to increase funding for the field and develop a coherent research agenda.

Cancer rehabilitation and palliative care: critical components in the delivery of high-quality oncology services.

Palliative care and rehabilitation practitioners are important collaborative referral sources for each other who can work together to improve the lives of cancer patients, survivors, and caregivers by improving both quality of care and quality of life. Cancer rehabilitation and palliative care involve the delivery of important but underutilized medical services to oncology patients by interdisciplinary teams. These subspecialties are similar in many respects, including their focus on improving cancer-related symptoms or cancer treatment-related side effects, improving health-related quality of life, lessening caregiver burden, and valuing patient-centered care and shared decision-making. They also aim to improve healthcare efficiencies and minimize costs by means such as reducing hospital lengths of stay and unanticipated readmissions. Although their goals are often aligned, different specialized skills and approaches are used in the delivery of care. For example, while each specialty prioritizes goal-concordant care through identification of patient and family preferences and values, palliative care teams typically focus extensively on using patient and family communication to determine their goals of care, while also tending to comfort issues such as symptom management and spiritual concerns. Rehabilitation clinicians may tend to focus more specifically on functional issues such as identifying and treating deficits in physical, psychological, or cognitive impairments and any resulting disability and negative impact on quality of life. Additionally, although palliative care and rehabilitation practitioners are trained to diagnose and treat medically complex patients, rehabilitation clinicians also treat many patients with a single impairment and a low symptom burden. In these cases, the goal is often cure of the underlying neurologic or musculoskeletal condition. This report defines and describes cancer rehabilitation and palliative care, delineates their respective roles in comprehensive oncology care, and highlights how these services can contribute complementary components of essential quality care. An understanding of how cancer rehabilitation and palliative care are aligned in goal setting, but distinct in approach may help facilitate earlier integration of both into the oncology care continuum—supporting efforts to improve physical, psychological, cognitive, functional, and quality of life outcomes in patients and survivors.

Taking Action to Ease Suffering: Advancing Cancer Pain Control as a Health Care Priority†‡§

“We don’t beat the Reaper by living longer. We beat the Reaper by living well.” Professor Randy Pausch made this declaration in his May 2008 address to graduates at Carnegie Mellon University just months before his death last September. His cancer battle and his personal priorities, as he described in his Carnegie “Last Lecture,” resonated with the public in a remarkable way and captured the heart and soul of what most patients believe and want. There is no doubt that persons diagnosed with cancer want to be cured or, at least, achieve a long remission from disease. But setting aside prognosis, most patients and their loved ones also want to be able to live well with their cancer—whether that life lasts weeks, months, or years. They also want to have comfort, dignity, and relief from pain as they face the end of life. Pain remains one of the most feared and burdensome symptoms for cancer patients and survivors. Nearly all cancer pain can be relieved, yet the prevalence of pain and its undertreatment has remained consistently high and largely unchanged for more than 4 decades.1 Still more troubling, significant pain treatment and access disparities in medically underserved and socioeconomically disadvantaged populations continue to be documented.2–5 Many effective pain medicines and nondrug therapies are available to bring pain relief to cancer patients so that they can complete scheduled treatments, continue to work, and enjoy the company of family and friends.6,7 But significant pain assessment and management deficiencies are consistently reported in the clinical settings where cancer patients are seen.8–10 Open communication with health-care professionals about pain, the medications for it, and other methods available to treat it is essential to relieve symptoms and improve quality of life. Opioid analgesics, generally recognized as a mainstay of treatment for moderate to severe cancer pain, pose particular policy challenges for practitioners. These controlled substances tend to trigger a dueling policy debate among physicians, who must consider the interface between providing pain relief and curbing diversion and misuse.11,12 Health care professionals are increasingly being recruited to fight on both fronts, but they are armed with very little clear and practical prescribing guidance from the Drug Enforcement Administration (DEA) or state medical boards.13 Adding to the challenge, the growing misuse of prescription pain medications appears to be receiving more frequent attention, including in the popular press. USA Today, and several other media outlets, covered the White House Director of National Drug Control Policy’s release of the DEA’s National Prescription Drug Threat Assessment this May and reported that unintentional deaths involving prescription opioids increased 114% from 2001 to 2005 (8,500 deaths nationwide), with pain relievers identified as the most widely abused and diverted, particularly among teens. According to this DEA report, 1 in 5 new drug abusers indicated that they began their illicit drug use with potent opioids such as oxycodone, hydrocodone, and methadone.14 The Food and Drug Administration (FDA) also has had its scope expanded and chose to carve out a role in drug control through its ongoing Risk Evaluation and Mitigation Strategy deliberations for cer-

Advancing a Quality-of-Life Agenda in Cancer Advocacy: Beyond the War Metaphor

Cancer advocacy has reached a pivotal point. When President Nixon declared “War on Cancer” by signing the National Cancer Act in 1971, advocates advanced a narrative that suffering and death from cancer should not be accepted; cancer should be fought and eradicated. Since then, nonprofit and academic institutions have focused their research and marketing strategies on prolonging survival, via cure and prevention. This strategy has been successful. Whereas only 3 million survivors lived in the United States in 1970, nearly 14 million Americans with a history of cancer were living in 2012. They will number 18 million by 2022.1(p52) As survival for many types of cancer has improved, however, goals must evolve as well. Cancer survivors desire both more days and better days. In response to the improved survival rates, cancer advocates have begun to place equal emphasis on prolonging survival and improving quality of life. They assert—and we agree—that it is time to move beyond the “war” metaphor to embrace a dual message of surviving and thriving. We propose 3 priority areas—in clinical practice, in messaging, and in research—in which a successful quality-of-life agenda can be implemented. Advances in early detection and treatment, coupled with advocacy campaigns organized around “conquering” or “eradicating” cancer, have driven the substantial gains in life expectancy among certain cancer types. Breast cancer is a stark example: 5-year survival for breast cancer alone has increased from 63% in the early 1960s to more than 90% today, due largely to improvements in early detection and treatment.2(p4) Alongside research investment, cancer advocacy efforts have helped improve detection and survival and, for some cancers, even offer a cure. There are limitations of a narrow focus on cure and prevention, however. The risks of overdiagnosis and overtreatment from large-scale cancer screening programs and associated treatment are now well known. Previous advocacy efforts have also fallen short in addressing family caregiver support needs, the high costs of cancer treatment, and symptoms and late effects that cause substantial preventable suffering.1 Long-term health consequences of cancer treatment are increasingly evident. Among adult survivors of childhood cancer, more than 98% experience a chronic health condition by age 45 years, including cardiomyopathy and pulmonary disease, that are in many cases attributable to treatment received early in life.3 Furthermore, total inflation-adjusted medical costs of cancer have nearly doubled between 1987 and 2005.4 The exorbitant costs of some novel chemotherapies and screening tools add another wrinkle to the complicated history of the metaphorical “war on cancer.” Health care professionals, activists, and patients need a new narrative—and a new metaphor—that responds to the changing demographic characteristics of the cancer population. Fortunately, the success of research and advocacy efforts in prolonging survival has paved the path for modernizing the high-quality care paradigm to reflect patients’ and families’ expanded priorities of survival and quality of life. Greater life expectancy for adults and children with cancer has inspired researchers, practitioners, and patient advocates to address pain, symptoms, distress, and other quality-oflife concerns alongside disease-directed treatment as an integral part of high-quality care.1 Clinically, tending to quality-of-life concerns and patient values in oncology treatment is now universally recommended by professional oncology organizations and accrediting entities. Integrating palliative care with standard therapy is one evidence-based strategy proven to improve quality of life and care while reducing costs— particularly among our nation’s sickest adults and children. Concurrent oncologic and palliative care is supported not only by a majority of patients in public opinion research5 but also by clinicians via evidence-based recommendations from the American Society for Clinical Oncology and American College of Surgeons.6,7 Recommendations in recent Institute of Medicine consensus reports have also underscored the importance of prioritizing clinical communication skills training in all oncology programs.1 To maintain physical and emotional functioning and support quality of life at any age and any stage across the care continuum, psychosocial and rehabilitation services must be integrated into palliative care (see Figure). Yet, despite known benefits, palliative care referral practices vary widely across the United States, and palliative care services remain rare outside the hospital setting. Advocacy organizations should seek to make palliative care services more widely available, promote communication training, and integrate psychosocial and rehabilitation services in clinical settings. Consistent and clear messaging through coordinated advocacy is also essential. As an initial step, more than 20 groups have partnered in building a “Patient Quality of Life Coalition” (www.patientqualityoflife .org) that provides the organizational and strategic framework for multiple disciplines to join forces in advancing this national quality-of-life movement. The coalition’s agenda involves legislation; informational campaigns using print and social media; and Internet resources for patients, families, and health care profesVIEWPOINT

Efforts to control prescription drug abuse: Why clinicians should be concerned and take action as essential advocates for rational policy

Introduction Faced with mounting evidence of a public health crisis so serious that the US Centers for Disease Control and Prevention (CDC) has termed it an “epidemic” of prescription painkiller abuse, resulting in an epidemic of prescription drug overdoses, federal and state government agencies have taken up the mantle in full force to implement a variety of far-reaching policy initiatives intended to address these related public health crises. Characteristic of most governmental efforts to rein in drug abuse over the past century or longer, many of these policy changes have focused almost exclusively on reducing the supply of medications available for abuse. Over the past decade, this has involved a particular emphasis on prescription opioid analgesics. From a policy standpoint, efforts to address the “supply side” of the drug abuse supply-and-demand equation are much easier to conceive and carry out than those focusing on primary prevention and access to appropriate substance abuse treatment on the “demand side.” Some have questioned the effectiveness of this heavy supply-side focus, but it nonetheless remains the staple of policy makers, regardless of whether the drugs in question are licit or illicit. For health care professionals and the patients with pain for whom they care, supply-side solutions pose a major concern. The CDC suggests that increased pain treatment involving more frequent prescribing of opioid analgesics is responsible for the abuse and overdose epidemics. Clinicians certainly need to be cognizant of the potential for their opioid prescriptions to be misused, abused, and diverted, and they support taking reasonable steps to prevent such outcomes, not to mention the overdoses that can result. Concerned clinicians want to participate in a system that takes appropriate steps to prevent drug abuse and diversion, but they also need a system that allows them to provide optimal pain care for individuals with pain. Implementing a system that achieves both aims is challenging, especially in the current environment that focuses heavily on misuse, abuse, addiction, and overdose rather than on pain and suffering. Thus, the flip side of the connection between prescribing and misuse/abuse/diversion, as noted by the CDC, also should concern clinicians and their patients: the possibility that a restricted supply (in an effort to control prescription drug abuse) may reduce the availability of medications needed by patients who use them therapeutically to control their pain and maintain their quality of life. If supply limitations are severe enough, it is possible that many of the gains in controlling pain and relieving suffering over the past 2 decades could be reversed, which is a devastating consequence by any measure. Management of cancer-related pain has, for many years, understandably been a driving force behind policies focused on improving clinical access to prescription opioid analgesics, spurred largely by studies documenting a high prevalence of untreated pain, particularly among patients with metastatic disease. Over time, the resulting prescribing practices for these medications were extended to treat other types of chronic and disabling noncancer pain, causing opioid analgesic prescribing to increase dramatically overall. Now, however, the quality care gains made in pain treatment that have helped preserve the functional status and quality of life for many individuals with pain, whether or not the pain is related to cancer, may be in jeopardy. That is a steep and unacceptable price to pay in the name of taking a strong national stand against prescription drug abuse.

Enhancing quality of life as a goal for anticancer therapeutics

Translational cancer research requires a quality-of-life–driven agenda. Translational cancer research requires a quality-of-life–driven agenda.

Palliative Care: A Lifeline to Quality of Life

ASCOs Provisional Clinical Opinion offers the opportunity to bring clinicians a significant step forward in delivering truly patient-centered, family-focused care that can make a difference.

Response to editorial by Richard Crevenna, MD, regarding “cancer rehabilitation and palliative care: critical components in the delivery of high-quality oncology services” by Silver et al.

Richard Crevenna, MD, provided insightful comments in his editorial response to our article entitled “Cancer Rehabilitation and Palliative Care: Critical Components in the Delivery of High-Quality Oncology Services” [1]. We were impressed by Dr. Crevenna’s description of the recent initiatives in interdisciplinary care, particularly in symptom management, at the Comprehensive Cancer Centre of the Medical University of Vienna. Notable were the inclusion of a rehabilitation tumor board and the integration of rehabilitation services into a clinic dedicated to symptom management which extends beyond issues typically associated with rehabilitation (e.g., mucositis and nausea). We believe that this type of interdisciplinary collaboration is critical to the success of well-designed cancer rehabilitation programs. The need to support interdisciplinary collaboration is precisely why we wrote this article. In fact, the genesis of our article was Dr. Julie Silver’s invitation from the Multinational Association of Supportive Care in Cancer (MASCC) leadership to be a plenary speaker at the 2015 annual meeting in Copenhagen, Denmark. Though not related by design, this meeting followed a landmark cancer rehabilitation “state of the science” initiative in the USA that was led by the Rehabilitation Medicine Department (RMD) at the National Institutes of Health (NIH) in collaboration with the National Center for Medical Rehabilitation Research (NCMRR) and the National Cancer Institute (NCI). In a variety of ways, every author on this paper participated in and supported this undertaking. During a conference at the NIH in June 2015, early findings were reported by workgroups comprised of subject matter experts. We anticipate publication of reports by the subject matter experts who participated in this cancer rehabilitation initiative. Dr. Silver co-chaired the Clinical Integration Work Group (CIWG) with Ana Acevedo, MD, a physiatrist from the NIH RMD. The CIWG developed preliminary recommendations in three related categories: education (preparing the workforce

Do current approaches to assessing therapy related adverse events align with the needs of long-term cancer patients and survivors?

The increasing efficacy of cancer therapeutics means that the timespan of cancer therapy administration is undergoing a transition to increasingly long-term settings. Unfortunately, chronic therapy-related adverse health events are an unintended, but not infrequent, outcome of these life-saving therapies. Historically, the cardio-oncology field has evolved as retrospective effort to understand the scope, mechanisms, and impact of treatment-related toxicities that were already impacting patients. This review explores whether current systemic approaches to detecting, reporting, tracking, and communicating AEs are better positioned to provide more proactive or concurrent information to mitigate the impact of AE’s on patient health and quality of life. Because the existing tools and frameworks for capturing these effects are not specific to cardiology, this study looks broadly at the landscape of approaches and assumptions. This review finds evidence of increasing focus on the provision of actionable information to support long-term health and quality of life for survivors and those on chronic therapy. However, the current means to assess and support the impact of this burden on patients and the healthcare system are often of limited relevance for an increasingly long-lived survivor and patient population.