JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 4, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2014.9439
Notes from the Editor
Integrating Palliative and Cancer Care Bethann Scarborough, MD and R. Sean Morrison MD, Senior Associate Editor
T
he article ‘‘Improving the Quality of Cancer Care: Implications for Palliative Care’’ outlines important components of the Institute of Medicine’s (IOM) report on the quality of cancer care in the United States and its implications for the field of palliative medicine. As the authors note, there is a need to provide palliative care to patients throughout the continuum of cancer and specifically to introduce palliative care earlier in the disease trajectory. In this issue of the Journal of Palliative Medicine, Ferrell and colleagues1 provide a superb summary for and outline a clear and definitive roadmap of needed steps to improve quality of care, communication and advance care planning, and cost of care for persons with cancer. If operationalized, their synthesis of the IOM report and their recommendations will dramatically increase the quality of medical treatment for patients with cancer and their families. Whereas the recommendations of Ferrell and colleagues are indeed inclusive, our experience of operating an integrated palliative care program within an oncology center and our collaborations with colleagues at other institutions have made us aware of a number of intangible factors that are not included in the IOM report. These factors need to be addressed if we are truly to form full collaborative relationships with our oncology colleagues. Specifically, we would like to raise awareness of the critical need for understanding the role of clinical trials in today’s antineoplastic treatments and the importance of each member of the multidisciplinary team in delivering unified messages to patients and families. In the past, clinical trials were the province of academic medical centers or considered an option only for patients who had exhausted standard chemotherapeutic treatments. Increasingly, however, participation in a clinical trial is regarded as a standard of care. Indeed, the National Comprehensive Cancer guidelines state that ‘‘the best management of any cancer patient is in a clinical trial’’ and furthermore that ‘‘participation in clinical trials is especially encouraged.’’2 Patients may now be offered enrollment in a clinical trial as an alternative to first-line standard chemotherapy or after progressing through chemotherapy. For some trials, patients receive fairly standard treatment regimens with dose adjustments to attempt to reduce toxicity—these patients know what toxicities to expect as they go through treatment. In other trials, however, patients may not know what toxicities to expect, and as a result it becomes difficult to discuss and weigh the benefits and burdens of a treatment when the burdens are unknown. Adding further complexity, some medications that are commonly used in symptom management for palliative care (i.e., corticosteroids, radiation ther-
apy) may result in confounding with respect to the planned intervention. In order to achieve the goals outlined in the IOM report, both oncologists and palliative care teams must be able to deliver a unified message on the benefits and burdens of a treatment—an increasingly complex task given the growth of participation in clinical trials. There are three main areas in which the palliative care team may have a unique role for patients enrolled in clinical trials. First, palliative care providers have the expert communication skills needed to offer assistance in decision making, particularly for complex decisions regarding enrollment in a clinical trial, standard care, or hospice. An ideal time to conduct this discussion is the ‘‘wash-out’’ period prior to enrollment in a trial. That is, most clinical trials require a defined period of time prior to study drug initiation in which the patient cannot receive other antineoplastic therapies. This period is an ideal time for a palliative care team to become involved and begin addressing goals of care. Second, for any patient enrolled in a clinical trial, but particularly for patients who are in phase 1 and 2 trials, palliative care can be helpful in assisting with the management of unknown treatment side effects, stress, and burden. The expert symptom assessment provided by palliative care clinicians may uncover symptoms that patients are reluctant to report or do not consider noteworthy unless they are specifically asked. The partnership between oncologists and palliative care teams results in greater leveraging of resources—the oncologist can focus on disease-directed treatments, whereas the palliative care team can focus on symptom-directed therapies. Finally, there is a critical role for the palliative care team in providing continuity throughout the continuum of care for patients enrolled in clinical trials. As patients enroll in clinical trials, they may transfer care to a different oncologist (the trialist) or even a different hospital (the trial site). Rarely, however, unless they relocate to a different city, will patients and families need to transfer care to a different palliative care team. This affords the opportunity for patients to have seamless advance care planning discussions, expert symptom management, and psychosocial support provided by their palliative care team from the time of diagnosis to cure or death. The implications of clinical trials on the cost of care must also be considered. Clinical trials can dramatically reduce or eliminate the patient’s out-of-pocket cost for anything that is required by the study’s research protocol. Interestingly, although the National Comprehensive Cancer Network (NCCN) guidelines encourage participation in clinical trials and include recommendations on delivering palliative care to patients, research study protocols typically do not include
376
NOTES FROM THE EDITOR
palliative care. Thus, although the clinical trial often covers the cost of cancer treatment, it may not cover the out-ofpocket cost for a palliative medicine visit. This can be a substantial barrier to providing palliative care to patients who cannot afford it. The inclusion of palliative care as a core component of all clinical trials needs to be addressed. Finally, as palliative care becomes more integrated into standard oncologic care, it is increasingly important for patients to hear the same message from each specialist involved in their care. Patients receive treatments that are incredibly complex, and as such they place tremendous trust in their physicians. Yet, the typical pattern of care is sequential visits with the oncology team and then the palliative care team. Fully collaborative communication, including joint visits, may be needed to ensure patients receive a unified message from all their providers. As palliative care physicians and
377
oncologists begin to understand each others’ roles in providing care, we need to work together to ensure that patients receive treatments based on their individual values. Only when palliative care is integrated within all aspects of cancer care will we truly have realized the recommendations of the IOM report. This work was supported by the National Palliative Care Research Center. References
1. Ferrell B, Smith T, Levit L, Balogh E: Improving the quality of cancer care: Implications for palliative care. J Palliat Med 2014. 2. National Comprehensive Cancer Network: NCCN Guidelines. Fort Washington, PA, 2014.
Notes from the Editor
Integrating Palliative and Cancer Care Bethann Scarborough, MD and R. Sean Morrison MD, Senior Associate Editor
T
he article ‘‘Improving the Quality of Cancer Care: Implications for Palliative Care’’ outlines important components of the Institute of Medicine’s (IOM) report on the quality of cancer care in the United States and its implications for the field of palliative medicine. As the authors note, there is a need to provide palliative care to patients throughout the continuum of cancer and specifically to introduce palliative care earlier in the disease trajectory. In this issue of the Journal of Palliative Medicine, Ferrell and colleagues1 provide a superb summary for and outline a clear and definitive roadmap of needed steps to improve quality of care, communication and advance care planning, and cost of care for persons with cancer. If operationalized, their synthesis of the IOM report and their recommendations will dramatically increase the quality of medical treatment for patients with cancer and their families. Whereas the recommendations of Ferrell and colleagues are indeed inclusive, our experience of operating an integrated palliative care program within an oncology center and our collaborations with colleagues at other institutions have made us aware of a number of intangible factors that are not included in the IOM report. These factors need to be addressed if we are truly to form full collaborative relationships with our oncology colleagues. Specifically, we would like to raise awareness of the critical need for understanding the role of clinical trials in today’s antineoplastic treatments and the importance of each member of the multidisciplinary team in delivering unified messages to patients and families. In the past, clinical trials were the province of academic medical centers or considered an option only for patients who had exhausted standard chemotherapeutic treatments. Increasingly, however, participation in a clinical trial is regarded as a standard of care. Indeed, the National Comprehensive Cancer guidelines state that ‘‘the best management of any cancer patient is in a clinical trial’’ and furthermore that ‘‘participation in clinical trials is especially encouraged.’’2 Patients may now be offered enrollment in a clinical trial as an alternative to first-line standard chemotherapy or after progressing through chemotherapy. For some trials, patients receive fairly standard treatment regimens with dose adjustments to attempt to reduce toxicity—these patients know what toxicities to expect as they go through treatment. In other trials, however, patients may not know what toxicities to expect, and as a result it becomes difficult to discuss and weigh the benefits and burdens of a treatment when the burdens are unknown. Adding further complexity, some medications that are commonly used in symptom management for palliative care (i.e., corticosteroids, radiation ther-
apy) may result in confounding with respect to the planned intervention. In order to achieve the goals outlined in the IOM report, both oncologists and palliative care teams must be able to deliver a unified message on the benefits and burdens of a treatment—an increasingly complex task given the growth of participation in clinical trials. There are three main areas in which the palliative care team may have a unique role for patients enrolled in clinical trials. First, palliative care providers have the expert communication skills needed to offer assistance in decision making, particularly for complex decisions regarding enrollment in a clinical trial, standard care, or hospice. An ideal time to conduct this discussion is the ‘‘wash-out’’ period prior to enrollment in a trial. That is, most clinical trials require a defined period of time prior to study drug initiation in which the patient cannot receive other antineoplastic therapies. This period is an ideal time for a palliative care team to become involved and begin addressing goals of care. Second, for any patient enrolled in a clinical trial, but particularly for patients who are in phase 1 and 2 trials, palliative care can be helpful in assisting with the management of unknown treatment side effects, stress, and burden. The expert symptom assessment provided by palliative care clinicians may uncover symptoms that patients are reluctant to report or do not consider noteworthy unless they are specifically asked. The partnership between oncologists and palliative care teams results in greater leveraging of resources—the oncologist can focus on disease-directed treatments, whereas the palliative care team can focus on symptom-directed therapies. Finally, there is a critical role for the palliative care team in providing continuity throughout the continuum of care for patients enrolled in clinical trials. As patients enroll in clinical trials, they may transfer care to a different oncologist (the trialist) or even a different hospital (the trial site). Rarely, however, unless they relocate to a different city, will patients and families need to transfer care to a different palliative care team. This affords the opportunity for patients to have seamless advance care planning discussions, expert symptom management, and psychosocial support provided by their palliative care team from the time of diagnosis to cure or death. The implications of clinical trials on the cost of care must also be considered. Clinical trials can dramatically reduce or eliminate the patient’s out-of-pocket cost for anything that is required by the study’s research protocol. Interestingly, although the National Comprehensive Cancer Network (NCCN) guidelines encourage participation in clinical trials and include recommendations on delivering palliative care to patients, research study protocols typically do not include
376
NOTES FROM THE EDITOR
palliative care. Thus, although the clinical trial often covers the cost of cancer treatment, it may not cover the out-ofpocket cost for a palliative medicine visit. This can be a substantial barrier to providing palliative care to patients who cannot afford it. The inclusion of palliative care as a core component of all clinical trials needs to be addressed. Finally, as palliative care becomes more integrated into standard oncologic care, it is increasingly important for patients to hear the same message from each specialist involved in their care. Patients receive treatments that are incredibly complex, and as such they place tremendous trust in their physicians. Yet, the typical pattern of care is sequential visits with the oncology team and then the palliative care team. Fully collaborative communication, including joint visits, may be needed to ensure patients receive a unified message from all their providers. As palliative care physicians and
377
oncologists begin to understand each others’ roles in providing care, we need to work together to ensure that patients receive treatments based on their individual values. Only when palliative care is integrated within all aspects of cancer care will we truly have realized the recommendations of the IOM report. This work was supported by the National Palliative Care Research Center. References
1. Ferrell B, Smith T, Levit L, Balogh E: Improving the quality of cancer care: Implications for palliative care. J Palliat Med 2014. 2. National Comprehensive Cancer Network: NCCN Guidelines. Fort Washington, PA, 2014.
