ABSTRACT: The timely integration of palliative care services into standard oncology care is essential to providing comprehensive individualized care for patients with advanced and incurable cancer and their families. Herein we discuss five important areas in which this integration is critical to optimize management, namely: symptom management, transitioning from disease-focused care to palliative care, discussing goals of care and advance care planning, community care, and psychosocial support for the patient and family.
Patients with advanced progressive cancer require care plans that address their physical, emotional, and psychosocial needs, as well as their goals of care. However, it is difficult for oncologists working in isolation to properly identify these needs and deliver comprehensive care. In the past, patients and physicians generally considered oncology and palliative care to be mutually exclusive domains, with the latter being reserved only for the end of life, when all disease-modifying therapy had ceased. It is now accepted that integrating the two earlier in the course of a patient's disease can lead to improvements in symptom control; quality of life (QOL); patient and family satisfaction with care; and the coordination, efficiency, and effectiveness of services provided.
Given the projected rise in prevalence of patients with incurable cancer in the coming years, an ideal model of sustained collaboration between oncology and palliative care could provide appropriate, timely, comprehensive, and cost-effective care. There are five key components of patient care in which such cooperation is especially important: symptom management, transitioning from disease-focused care to palliative care, discussing goals of care and advance care planning, community care, and patient and family psychosocial support.
In recent years, anti-cancer therapies have proven more effective at prolonging life in patients with incurable cancer. An unfortunate consequence of this progress has been a longer duration of time during which patients are at risk of symptoms from complications related to the disease and its treatment. With this in mind, evidence-based and multidisciplinary strategies for assessing and managing symptoms in this population are critical to providing effective care in hospital, outpatient, and home-based settings.
Patients with advanced cancer suffer from a range of symptoms throughout the course of their disease. Metastases are often first confirmed after new symptoms develop, and as the distribution of disease changes with time, so does the character of the symptom experience. Patients develop local symptoms such as pain, bleeding; obstruction and dysfunction as a result of macroscopic primary or metastatic lesions; biochemical disturbances caused by systemic changes or paraneoplastic syndromes; and more general constitutional symptoms such as malaise, cachexia, and fatigue, as a result of overall disease progression. Investigations and treatments also lead to symptoms and complications, as patients commonly undergo biopsies, surgery, chemotherapy, and radiotherapy. Polypharmacy may become a concern as well, especially in the elderly.
Symptom management needs to be a key focus at all times for practitioners caring for these patients, and a strategy of prevention rather than reaction should be employed. Unfortunately it is challenging for oncologists to continuously and rigorously evaluate all of their patients, especially those presenting with multiple symptoms which may or may not be related to their cancers or treatments.
Comprehensive assessments and treatment plans that are delivered by teams of care providers including palliative care professionals, and which address the full range of symptoms, should provide the obvious benefit of superior symptom relief. They have also been shown to improve QOL and other patient-reported outcomes, and to have an impact on survival. A recent single-center non-blinded randomized controlled trial involved ambulatory patients with good performance status within 8 weeks of being diagnosed with metastatic non–small cell-lung carcinoma. It compared the early integration of a palliative care program with standard oncologic care vs standard oncologic care alone. In this trial, Temel and colleagues designed their palliative care program by adapting a model from the National Consensus Project for Quality Palliative Care, and patients randomized to this intervention met with board-certified palliative care physicians and advanced-practice nurses within 3 weeks of enrollment, and then monthly afterwards until death. At 12 weeks, patients receiving the intervention had a significantly improved symptom profile as measured by the mean change in a trial-specific self-reported QOL score that represented the sum of scores on the LCS (lung cancer subscale) of the FACT-L (Functional Assessment of Cancer Therapy–Lung) scale and the physical well-being and functional well-being subscales of the FACT-L scale. Surprisingly they also showed a significantly longer survival time of 11.6 months for the palliative care intervention group, vs 8.9 months for patients with standard care. The authors hypothesized that the improved survival may have been due to better symptom management leading to clinical stabilization, but they and others rightly note that further study is needed to validate their findings and test such a hypothesis.[2,5,6] Other randomized studies of inpatient, outpatient, and home-based palliative care interventions for patients with cancer have shown mixed results with respect to physical symptom improvement, and it has been suggested that programs may require clinic-based and face-to-face components to effectively palliate physical symptoms.
However, this emphasis on collaborative programs is not to suggest that effective symptom management can only be provided by specialized palliative care services and experts. Oncologists and primary care physicians possess the basic skills and competencies to assess and manage most symptoms experienced by patients. Their jobs can be made easier by use of evidence-based algorithms for assessment and treatment, checklists, patient and practitioner education and evaluation, and continuous quality improvement supported by consulting palliative care personnel as necessary. Referrals to specialized palliative care services (eg, secondary or tertiary services) are necessary for cases of complicated, multiple, or refractory symptoms, or for opinions on effective prevention strategies prior to implementing treatments or transitioning patients from one setting to another.
Transitioning From Disease-Focused Care to Palliative Care
After patients are first informed that their disease cannot be cured, they proceed through a difficult period of transition that must be approached carefully. Each patient's transition is unique. Some make it after many years of active but uneventful oncologic follow-up care; for them the possibility of progression or recurrence would not have been forgotten, but would have been perceived to be less likely with the passage of time. Their transitions are especially challenging early on since their emotional defences are not readied as they were a short time following definitive treatment. Others make the transition quickly, perhaps only days following a diagnosis of malignancy, being just removed from an otherwise “normal” life without cancer.
Another important impact on a patient's transition is that the distinction of incurability does not imply that death is imminent. Patients with advanced and metastatic cancer may live for years. The challenges of a transition to this type of ‘long' life expectancy are much different from those for a patient nearing the end of life.
Despite significant case variability, all patients similarly require individualized attention to allow them to react to, understand, plan for, and perhaps accept their prognosis and disease trajectory.
Integrating palliative cancer care at the time of transition can make a positive impact. Within the oncology setting, immediate decisions typically pertain to disease-specific goals, such as considering systemic treatment, or radiotherapy for symptomatic areas. Goals of care regarding symptom control and emotional, psychosocial, and spiritual concerns should also be set at this time, but they are often overlooked when attention is focused on physical disease. Sometimes completely asymptomatic patients have incurable disease detected only by laboratory or imaging tests, and no immediate disease-modifying treatments are required. If patients are not connected with some form of palliative care at this time, they could be left alone to process disturbing news until the next oncology follow-up appointment.
Palliative care specialists can help guide patients and their families, as well as patients' oncologists, through the transition from disease-modifying therapy to care focused on palliative goals. They can serve as experts for symptom management, attest to a patient's prognosis, certify that a patient requires the services and treatments that have been recommended, and gain consensus among service providers to prevent fragmentation of care. These specialists can also help patients and families cope with the difficult issues of dying and death. It is important to note that the precise time to begin integrating palliative care for an individual patient will be determined by a wide variety of patient and family wishes and preferences, the attitudes of care providers, the available palliative care resources, and institutional values and policies.