ABSTRACT: Twenty years of research in controlling symptoms such as pain and nausea have shown persistent suboptimal performance by the US oncology system. The data suggest that some of the tools of palliative care programs can improve physical symptoms of seriously ill patients at a cost society can afford. To fix these problems will require recognition of the symptoms or concerns, a system such as an algorithm or care plan for addressing each, measurement of the change, and accountability for the change. Symptom assessment scales such as the Edmonton Symptom Assessment Scale or Rotterdam Symptom Check List work to make symptoms manifest. Listing symptoms on a problem list is a necessary step in addressing them. Physical symptoms such as pain can be improved by use of computer prompts, algorithms, dedicated staff time, team management, or combinations of these strategies. Less concrete problems such as medically appropriate goal-setting, integrating palliative care into anticancer care sooner, and informing patients about the benefits and risks of chemotherapy near the end of life require more complex solutions. We review what is known about symptom control in oncology, how and why some programs do better, and make suggestions for practice. Finally, we suggest a practical plan for using symptom assessment scales, listing the problems, and managing them according to algorithms or other predetermined plans.
Oncology health-care professionals pride themselves on taking the best possible care of their patients, and the American Society of Clinical Oncology and Oncology Nursing Society have been emphasizing the care of the total patient for years. Foley first published her landmark article on cancer pain treatment in 1985, describing deficiencies and remedies. Oncologists recognized over a decade ago that pain and other symptom control in their own practices was not optimal.[2,3] Unfortunately, pain control does not seem to have improved as much as the recognition of poor performance. The Institute of Medicine noted that the quality of all cancer care is too often not optimal. While much of the emphasis in quality improvement has been with outcomes such as survival and complication rates,[5,6] supportive and palliative care has remained deficient for many cancer patients in a number of areas,[7,8] as shown in Table 1. Like an indolent lymphoma, the problem keeps surfacing.
There are remarkably few data on relief of other symptoms such as fatigue, dyspnea, delirium, agitation, or how well oncologists help patients clarify wishes at the end of life, but it is a recurring complaint from health-care professionals that come to our center to learn how to do palliative care. We know that only half of all patients receiving cisplatin(Drug information on cisplatin)-containing regimens receive appropriate delayed-emesis regimens, even though adherence to antiemetic guidelines improves outcomes.[9,10] Fewer than 20% of on cology inpatients have documented "do/do not resuscitate" orders, a number that has not increased despite 20 years of efforts to increase public awareness about advance directives. We know that 20% or more of Medicare patients are being treated with chemotherapy within a month of their death,[12,13] patients are being referred later and later to hospice, and patients who do not know or overestimate their prognosis are more likely to die in the hospital or intensive care unit.[15,16] We have listed some of the known areas for symptom improvement in Table 1.[2,3,9,17-24]
If symptom relief is good medicine, patients want it, society wants it, and the tools are available, why has it not been routinely accomplished? The reasons for these findings are varied, but issues such as symptom awareness, symptom assessment, provider knowledge, provider preference, clinical autonomy, and provider time burden likely play some role in these clinical outcomes.[25,26] Recent reviews have noted some of the substantial patient, family, provider, and payer barriers to enhancing symptom control and palliative care especially at the end of life, so we should not expect rapid and miraculous change. Some cancer centers have begun programs to fully integrate symptom control into their programs, but this has not trickled down to the everyday practice reported to us when cancer centers come to learn how to set up palliative care programs.
In this review, we will cover some practical attempts to improve care, much of which is based on our experience as a Palliative Care Leadership Center charged with helping cancer centers integrate symptom control into the care of their patients. To do so will require at least the following: (1) recognition that care is not optimal now; (2) clinical trial evidence that outcomes can be improved; (3) ways to make symptoms easily visible; (4) and methods to improve practitioner behavior. We will concentrate on what oncologists can do to improve care in their offices and practices today.
Palliative and Supportive Care Is Suboptimal
There are no national data on symptom control, but all the available practical evidence and the evidence listed above suggests that care really is not optimal. For instance, the Joint Commission on Accreditation of Healthcare Organizations made pain the fifth vital sign, in an attempt to make hospitals at least measure pain and make it visible. The National Quality Forum recently created a national task force to make auditable guidelines for symptom control and end-of-life care. We have listed some of the most easily recognizable deficiencies above, but there is needed work in patient communication, patient recognition and acceptance of the end of life, recognition of spiritual needs, integration of family meetings into difficult goal-setting sessions, and management of these tasks along with other professional duties, to name a few.
In the coming years, oncologists will be expected to provide more proof that therapy is both effective and affordable. This has come to the fore with the expensive new medicines such as oxaliplatin(Drug information on oxaliplatin) (Eloxatin), cetuximab(Drug information on cetuximab) (Erbitux), bevacizimab (Avastin), irinotecan(Drug information on irinotecan) (Camptosar), gefitinib(Drug information on gefitinib) (Iressa), granulocyte colony-stimulating factor (filgrastim, [Neupogen]), pegylated granulocyte colony-stimulating factor (pegfilgrastim [Neulasta]), epoetin alfa(Drug information on epoetin alfa) (Epogen, Procrit), and darbepoetin (Aranesp). Any new ventures will be expected to show that they can fit into increasingly tight budgets. Increased supportive care and palliative care will be subjected to the same scrutiny as new medications.
Evidence That Outcomes Can Be Improved
Several trials have shown that oncology cancer patients can achieve better pain and symptom outcomes in regular practice. In a trial conducted in community oncology practices in 1997, Du Pen and colleagues randomized patients to two treatment arms. Group 1 received standard care from their usual oncology care practitioners and treatments; group 2 was interviewed by a nurse to ascertain pain scores, and the pain was then managed by the team according to an algorithm based on the Agency for Health Care Policy and Research (AHCPR, now the Agency for Healthcare Quality Research) guidelines. The reduction in pain scores is shown in Figure 1. The standard group showed no improvement, even though the practitioners knew the study was ongoing in their offices and the results would be reported. The intervention group had a significant (25%-40%) reduction in pain, which was sustained as long as the trial lasted.
In the Cancer Pain Trial, the control group (Control CPT in Figure 1) had a 39% reduction in pain scores. The intervention in the control group included comanagement by the oncologist and a pain specialist, using recommended algorithms, instead of by the oncologist alone. The control group had changes in the dose and type of opioids, additional drugs such as neuroleptics, and better management of side effects. Since two separate pain scores over 5 out of 10 were required to enter the trial, it seems highly unlikely that continued management by the oncologist alone would have been effective.
Higginson has systematically reviewed the evidence for palliative care programs and found that although the quality of the studies varies widely, symptoms can be improved. For pain alone, hospital-based palliative care teams had an effect size of 0.60, or a 60% reduction in pain scores, and an overall effect size of 0.22, or a 22% reduction in other symptoms. For a patient with a visual analog score of 8/10, the new score would be only 3.2 after the intervention—very clearly important.[34,35] The effectiveness of palliative care and hospice consultation teams in all settings was also striking, resulting in a reduction in patient pain scores (odds ratio [OR] = 0.38, 95% confidence interval [CI] = 0.23-0.64) and other symptoms (OR = 0.51, CI = 0.30-0.88), as well as a nonsignificant trend toward benefits in terms of patient satisfaction and therapeutic interventions. Data regarding home deaths were equivocal. Such comparisons were limited by the quality of the research, but all the available data, taken together, show a positive effect.
Miaskowski and colleagues recently reported on the success of a patient education program in reducing cancer pain scores. The intervention group was given specific education, taught how to use a pillbox, and given "written instructions on how to communicate with their physician about unrelieved pain and the need for changes in their pain medication." The intervention group also had two home visits and added telephone calls for coaching. This involvement of patients lowered average pain scores by 32.5%, compared with an increase of 1.9% in the control group.
Solid evidence shows that hospitalbased consultation teams and inpatient units can reduce symptoms for inpatients. At the University of Texas M. D. Anderson Cancer Center, investigators noted a substantial reduction in symptoms after a palliative care consultation (using the Edmonton Symptom Assessment Scale to gauge symptoms, predetermined treatments for common symptoms, and expert attendings). Pain scores were reduced by 44%, nausea by 41%, fatigue by 39%, and dyspnea by 38%.
As part of a quality assurance program to assess our use of algorithms, we tracked symptom scores on all patients admitted to the Thomas Palliative Care Unit during a 1-month period. As shown in Figure 2, all the measured symptoms were reduced. Although this was not a high-powered study, the results are strikingly similar to those produced in over 2,500 patients by the Mount Sinai Palliative Care Consultation Service (data available at www.capc.org).
The available data suggest that more attention to symptom control and care planning can reduce healthcare costs (Table 2).[37-41] Many of these findings, however, have appeared in business-oriented publications and are not readily accessible to practicing oncologists. In addition, much of the data is proprietary and sensitive, in that health-care plans do not want members to think they are reducing services or switching away from active treatment just to save money. Hospice cannot be expected to save enough money that there will be room to give more expensive care. In fact, the newer data suggest that cancer patients who choose hospice probably conserve only a small amount—about 10% of the costs for patients with aggressive cancer, and some minor cost savings for younger Medicare patients with cancer. Much of the available data and concordant evidence is summarized on the Center to Advance Palliative Care website (www.capc.org) or available from our data analyst and business manager, J. Brian Cassel, PhD (firstname.lastname@example.org).
At our own center, we have studied the financial outcomes for both scientific publication and the business community, and the costs are consistently about 50% of usual care for patients who have died in the hospital (Figure 3). This includes matched case controls of patients who died on the service and in the rest of the hospital, cohort series, and patients transferred from other units. The health system has "cost avoidance" of at least $1 million annually due the transfer of patients from high-cost units to the lower-cost unit. In addition, bed availability, especially in the intensive care units, has improved.
The impact of palliative care on the individual physician and practice is more difficult to define. There is no procedure associated with palliative care, and the time spent in difficult family meetings, goal setting, and so forth has not been as well reimbursed as chemotherapy. Very little has actually been published about the amount of time needed, or actually spent, in day-to-day oncology care. Our group has shown that the amount of time needed to have a "do not resuscitate" discussion with a cancer patient is only 12 minutes or less, and should be includable in most hospital or office visits. Some of the limited available data suggest that physicians may be spending only 3 ± 3 minutes in the room of seriously ill hospitalized patients, which is not enough time to have these discussions. More data are clearly needed on typical practice patterns and concerning whether the reimbursement is sufficient to cover the expense of more time-consuming practice.
This situation may be different with the use of costly supportive drugs, which is outside the realm of this review. While supportive care drugs such as epoetin alfa, darbepoetin, filgrastim(Drug information on filgrastim), and the like may reduce toxicity and even have a small impact on survival, their high acquisition cost makes their cost-effectiveness a concern except in cases of clear-cut survival benefit.