Patients with advanced progressive cancer require care plans that address their physical, emotional, and psychosocial needs, as well as their goals of care.
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.
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.
Patients need guidance and support while they make plans for their futures. Unfortunately, studies have repeatedly documented that patients with incurable cancer are confused regarding their prognoses and goals of care,[10,11] making them more likely to choose aggressive medical care at the end of life.[12,13] The potential for inappropriate aggressive treatment at the end of life was recently highlighted in a large population-based study from Canada that demonstrated increasing rates of chemotherapy administration within 14 days of death, and of emergency department visits and intensive care unit admissions within 30 days of death. An important function of palliative care in this setting is educating patients about their disease so they can make informed choices and select care plans that match their overall goals. The need for communication and collaboration among care providers is especially great now in the setting of minimal metastatic cancer, in which the evolving, aggressive, and expensive approach to treating oligometastatic disease is blurring the line between potentially curative and palliative management.
In the study by Temel et al, patients receiving the early palliative care intervention were more likely to remain accurate or become accurate in their perceptions of their own curability compared with patients receiving standard oncology care alone.[2,13] This improved accuracy also appeared to affect treatment choices, as patients with an accurate perception of the state of their malignancy received significantly less intravenous chemotherapy near the end of life. These are important findings: they demonstrate that the palliative care program had an impact on treatment choices, and that its influence extended to the domain of potentially life-prolonging anti-cancer therapy, and not just the traditional “palliative” domain of pain and symptom control.
Having palliative care integrated with oncologic care can also aid patients who indeed choose more aggressive treatment, but unfortunately many of them decline assistance because of a false belief that accepting palliative care will lead to treatment decisions that will shorten their lifespan. This approach impedes patients and their families from receiving care for physical, psychosocial, and spiritual issues, and it ignores both the knowledge and experience of palliative care specialists and the important contributions they can make to decisions regarding anti-cancer therapies. There is also evidence suggesting that patients with advanced cancer who receive early palliative care actually live longer than those who do not, irrespective of the aggressiveness of their anti-cancer treatment.[2,7,15]
Beyond the obvious benefits to patients and families in terms of decision-making, palliative care interventions involving goal setting and advance care planning may also reduce utilization of cancer center and hospital resources, and thereby lower healthcare costs. Hospital admissions and unplanned readmissions can be reduced, as can outpatient appointments for specialty care. Patients are also more likely to have resuscitation preferences documented, and this can reduce futile and costly end-of-life heroic measures and intensive care unit admissions.
Proper end-of-life care should begin before this time with advance care planning. A care plan should be developed that addresses preferred living arrangements and financial plans to access them, advance directives, surrogate decision-making, and wishes regarding resuscitation and other life-support measures. The plan must be adaptive as well, because goals of care will change as the disease progresses. Although patients at this stage of their disease frequently receive oncologic treatment, oncologists can be challenged to adequately address all of these advance care planning issues. The palliative care specialist is ideally suited to leading here if needed, and can guide the care plan to completion.
The ideal palliative care network to support patients with advanced cancer in the community would include medical team members from oncology, palliative care, and family practice, as well as professionals from nursing, social work, nutrition, rehabilitation, pharmacy, and chaplaincy. The majority of necessary services would be provided outside of a hospital or cancer center, and would be available to patients at home. An important contribution of the palliative care professional can be to help prioritize, coordinate, and mobilize the community resources that are available for patients, being mindful of individualized needs, preferences, and resources.
The benefits of palliative care programs with an emphasis on optimizing community care have been described in randomized controlled studies. Hughes et al studied the impact of a team-managed home-based primary care model involving a primary care manager, 24-hour contact support, pre-approval of hospital readmissions, and comprehensive team discharge planning. Terminally ill patients and their caregivers showed improvements in a number of QOL outcomes compared with a control group receiving customary Veteran's Administration and private sector care. However, these improvements came at a price, with the mean per-person cost being 12.1% higher in the intervention arm than in the control arm. Similarly, Zimmer and colleagues studied a team approach to home care for home-bound terminally ill elderly patients. Their team included a physician, nurse practitioner, and social worker, and the intervention included physician house calls, weekly conferences to assure coordinated care, and a 24-hour telephone service. Patients receiving the intervention had fewer hospitalizations, nursing home admissions, and outpatient visits, and more were able to die at home compared with controls. The overall costs were also lower for the intervention group.
Evidence suggests that most terminally ill patients prefer to die at home. Palliative care programs have been shown to reduce the need for acute care services and hospital admissions, and patients receiving home care or house calls are less likely to die in an acute care setting.
Patients and their caregivers carry a significant emotional burden. Up to 25% of patients with cancer meet criteria for clinical depression, and compared with patients who do not have mood disturbances, depressed cancer patients are undertreated and have shorter survival times. Clearly, mood disorders and other psychiatric problems impact more than just a patient's psychological state.
Unfortunately, detecting these problems can be difficult for oncologists, who generally receive limited training in formal psychiatric assessment. A further challenge is that changes in affect or personality can also result from anti-cancer therapies or the natural progression of cancer itself. Self-report mood screening inventories for patients and brief screening interviews or comprehensive symptom checklists can help to increase detection rates for problems such as depression, but such tools can lack specificity among patients with advanced cancer, who often present with a range of symptoms.
Palliative care professionals can help to identify patients at risk and appropriately guide referrals for formal psychiatric evaluation. Indeed, assessment and subsequent intervention is worthwhile. A recent review of randomized trials of palliative care interventions concluded that initiatives for patients and caregivers with respect to depression, anxiety, spiritual well-being, emotional well-being, life satisfaction, and self-esteem have in general proven beneficial with respect to symptom distress, QOL, satisfaction with care, and caregiver burden.
This article highlights the importance of palliative cancer care and the palliative care specialist to patients with incurable cancer. Oncology treatment programs have difficulty assessing and managing the many domains of care required by these patients, making collaboration across disciplines critical.
Because palliative care services are broad, it is important to engage professionals from many backgrounds when designing and implementing care plans. If only partial services are provided, only partial gains may be achieved among a patient's many needs.
Further randomized studies of palliative care interventions that use common efficacy endpoints and comparable treatment arms will help to evaluate the relative effectiveness of different models of care. Regular collaboration within such multidisciplinary interventions will also foster education and learning. This will enable oncologists to safely and efficiently manage many routine palliative care issues, allowing them to reserve referrals to palliative care specialists for more complicated issues beyond their capabilities. The cost-effectiveness of palliative care services also requires further study, to determine the relative impact of interventions on both hospital-based costs and overall healthcare costs.
Financial Disclosure:The authors have no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.
Acknowledgements:Dr. Dennis is supported by a Canadian Institutes of Health Research (CIHR) Fellowship Award. The authors are thankful for the support of the Michael and Karyn Goldstein Cancer Research Fund.
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