Integration of palliative care into the neuro-oncology practice: patterns in the United States.

Palliative care (PC) is a proactive and systematic approach to managing issues that are important to patients and families affected by serious illness. The goal is to improve quality of life and control symptoms and thereby reduce suffering. Modern PC medicine has undergone tremendous growth and change since the 1960s. While the early focus was primarily on controlling symptoms caused by cancer and near the end of life, today's subspecialty training in PC medicine prepares physicians and other providers to work in a multidisciplinary team to support patients and their families affected by cancer and other serious illnesses.1 PC is defined by the World Health Organization as “… an approach that improves the quality of life of patients and their families, facing the problem associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”2 PC is strictly multidisciplinary and is delivered by a team of physicians, nurses, and other specialists who work together with a patient's other doctors to help with symptom management in patients facing a life-threatening disease. In the beginning, PC and hospice medicine were focused on patients with cancer, but modern PC encompasses symptom management with the goal of improving the quality of life for any patient affected by a serious illnesses. PC is appropriate at any stage in a serious illness and can be provided together with curative treatment. In recent years, there have been discussions about changing the term PC into “supportive care” because there is concern that the term “palliative care” carries negative connotations for patients and referring physicians and might impose a barrier when accessing PC services.3–5 Although controversies remain about the exact definition,6 the terms “palliative care” and “supportive care” will be used synonymously for the purpose of this article. In the United States, there is a clear separation between PC medicine and hospice based on reimbursement rules established by Medicare. Hospice services and PC medicine provide symptom relief and pain management; however, PC services can be offered concurrently to any patient without restriction to prognosis, while hospice care requires that a patient have a life expectancy <6 months under the Medicare Hospice Benefit. PC originated in the hospice movement but is now often practiced separately from traditional hospice care. The first modern hospice, St. Christopher's Hospice, was founded by Dame Cicely Saunders in the United Kingdom in 1967.1 Since then, PC and hospice medicine have developed rapidly. PC was recognized by the American Board of Medical Specialties as a specialty in 2007, and the number of programs has expanded rapidly ever since. While PC originated in Great Britain, one of the first reported inpatient PC units in North America was opened in Montreal in 1976,9 and these services are now widely available.8 Ninety-eight percent of all National Cancer Institute-designated cancer centers and 85% of all large hospitals are reported to have PC programs.7,8 In the beginning of the PC movement, attention was focused strictly on the end-of-life care needs of patients with advanced cancer. The interest in symptom control and development of modern PC medicine as a separate service apart from hospice care started in the 1970s. PC services focused on improving the physical, social, psychological, and spiritual support of patients with life-limiting illness by utilizing a multidisciplinary team.1 In addition to providing inpatient services only, PC has expanded into outpatient assessment and treatment as well. Glioblastomas (GBMs) and the majority of anaplastic gliomas are treated with maximal surgical resection, followed by radiotherapy with concurrent and adjuvant chemotherapy to the residual tumor and surrounding brain tissue.10,11 Despite this aggressive approach, the median survival for anaplastic glioma is estimated to be 2–5 years, and median survival is only 15 months for patients with GBM.10,12,13 For most patients with high-grade glioma, long-term survival remains elusive. Therefore, quality of life has become an increasingly important outcome assessed in brain tumor clinical trials as well as in standard of care evaluations in brain tumor centers.14,15 While it is the goal of neuro-oncologists to extend survival, PC focuses on the well-being and symptom control of patients and families. Aspects defining most people's lives include physical, emotional, spiritual, sexual, social, and financial domains. PC services can be utilized at any point along the disease trajectory, independent of the goal achieving a cure or merely extending survival to address these concerns (Table 1).16 Table 1. Roles and Goals of Palliative Care The aim of this topic review is to understand the different conceptual models of PC and the timing of PC involvement and how these models apply to neuro-oncology because the integration of PC into the field of neuro-oncology might improve the care and quality of life of brain tumor patients and their families.