In 2003, the Institute of Medicine identified end-of-life care as a “priority” health care area for improvement. Responding to this need, the ACP recently released new practice guidelines, which were published in the Jan. 15 Annals of Internal Medicine as “Evidence-based Interventions to Improve the Palliative Care of Pain, Dyspnea, and Depression at the End of Life.”
While guidelines have been written in the past to address certain aspects of end-of-life care, such as the assessment and treatment of pain, no generic guidelines existed. Among other things, the College's new guidelines recommend that clinicians regularly assess end-of-life patients for symptoms of pain, dyspnea and depression, and use proven therapies to treat these three conditions. A companion article reviewed the evidence for specific therapies, such as bisphosphonates for cancer patients and opioids for patients with dyspnea. The guidelines also recommend clinicians ensure that advance care planning, including completion of advance directives, occurs for all patients with serious illness. Access the full text of the guidelines at annals.org. .
A co-author of the guidelines, Donald E. Casey Jr., FACP, vice president of quality and chief medical officer at Atlantic Health in Morristown, N.J., spoke with ACP Internist about some of the practical issues surrounding palliative care at end-of-life, and how the new guidelines address them.
Q: Why were these guidelines written?
A: There is fairly good evidence that, as a whole, the health system is doing a not-so- good job of approaching patients who suffer consequences of chronic illnesses, especially as they approach the end-of-life. I think the College felt compelled to not just write the guidelines to but really look extensively at the evidence. It turns out from the evidence review that the palliative care interventions that internists would expect to be most effective for pain control, breathing trouble (dyspnea) and depression, are the very key areas that the medical community needs to focus and improve upon.
Q: Is there anything in the guidelines you expect to be controversial?
A: Often both patients and their health care professionals get confused when they think about discussing palliative care and end-of-life issues with each other. I think that patients who are at or near end-of-life clearly need more attention to comfort and symptom management. But palliative care can and should also be delivered well before the end of life approaches. Unfortunately, I think a lot of people equate palliative care with end-of-life care, and the two are related but not synonymous. So my hope is that we emphasized this important difference enough in the guideline and evidence report.
Q: The introduction to the guidelines says that high-quality evidence on palliative and end-of-life care is limited. How is that so, and what kind of research still needs to be done?
A: A lot of the existing evidence that's been published has been based upon observational studies. There were a fair number of studies we reviewed that were based upon randomized controlled evaluation methods, but in aggregate, we didn't see effects to the extent that we had hoped for, which is why we graded the evidence the way we did. It's difficult because this is such a complicated area, and because many of these patients have multiple problems, care environments and other challenges that need to be addressed simultaneously. Designing experimental studies that look at several specific major care issues at once is always going to be tougher. But it can be done.
Another issue that we found was that the study designs were often different and had different endpoints. So having some more standardization in terms of critical outcomes and other endpoints would be helpful for future research in these areas.
Q: Are there any specific interventions or diseases you think need more study, in relation to end-of-life care?
A: Definitely. There are lots of other chronic diseases besides cancer. I think we could look more cogently at heart failure, COPD and certain neurological conditions like stroke and degenerative diseases. There was some evidence that supported these areas, but the bulk of evidence was for patients with cancer. That's another limiting bias to our evaluation. We need to think more rationally about these other chronic illnesses in the same way we do about cancer, in that some of their trajectories can be very similar. Also, we have to get the front-line physicians to address issues earlier on in the care of chronically ill patients.
Q: What kind of issues should physicians address earlier on?
A: A big example is pain. Some patients may not wish to be treated with analgesics until their pain is severe. In fact, I think that focused assessments and conversations about pain and pain management early on in the course of a chronic illness could help a lot of people feel better, and certainly improve their quality of life. I am also interested in promoting earlier and more widespread recognition of depression, since it may confound how patients and families deal with the end of life. Unfortunately, depression is often either denied or not addressed when it could be effectively confronted and treated.
Q: When should the subjects of pain and depression be broached?
A: For assessment of pain, it is always appropriate at every encounter to ask the patient about its presence. For depression, however, we don't have a model of exactly when clinicians should begin these discussions. Certainly, patients with chronic illnesses are at higher risk for both pain and depression. Internists should be ever vigilant for warning signs and create opportunities for these patients to open up to them. For example, if a person has two or three hospitalizations for exacerbations of COPD, it is a good indication that the problem isn't going to go away. The physician might discuss with the patient that the disease process appears to be getting worse and allow the patient to express his or her own attitudes and beliefs toward the possibility of an evaluation for depression due to a higher risk.
Q: Can depression be a side effect of other medications used to treat chronic illnesses?
A: Certainly, certain medications can cause depressive symptoms and contribute to depression, but I'm speaking of major depression, which is a clinical and biologic condition. I can prescribe a medicine that drags my patient down and makes her feel badly, but she definitely feels better when she stops the medication. But if a patient is experiencing continual bad thoughts or suicidal ideation—the clinical signs of depression, then I should be considering the assistance of a psychiatrist to help guide a more formal assessment and aggressive treatment.
Q: How do these guidelines help physicians in deciding how to prescribe pain medications for advanced cancer patients or patients with advanced organ failure?
A: We really hope that these guidelines help to make physicians aware of the evidence in terms of a range of opportunities and options available for effective pain control. We didn't get specifically into evaluating whether particular protocols were more effective than others. I think that what the guideline emphasizes is the level of evidence behind these treatments. It helps to show that some of the things we evaluated, like acupuncture, don't have sufficient evidence, so you should stick with the things that work or have a higher level of evidence.
Q: Should severe pain be treated preemptively, or when the patient hits a certain point on a self-rated pain scale?
A: I think we have to be patient-centered and take into account the preferences and wishes of each patient at all times. And offering a spectrum of evidence-based opportunities where they exist can be very helpful—as can being cogent about what those opportunities are. Not all pain needs to be treated with narcotics. We've shown in these guidelines that strong evidence exists to support different options for specific types of pain.
Q: Do you have thoughts on treating pain with medication as needed vs. using a steady dose?
A: I think, again, it depends on the patient. Fortunately, we now have several different specific strategies that can be tailored to individual needs. For example, you might not want to use a long-acting pain medication that would likely interact with other prescribed drugs that act on the central nervous system, thus creating a risk in an elderly patient with multiple chronic illnesses of developing an acute delirium. So we have to balance the risk and benefit at each stage. The ultimate goal is to choose what we hope is the right strategy, and monitor it closely for benefit and harm every step of the way.
Q: Why do some hospitalized patients fail to get adequate pain control near the end-of-life?
A: There are multiple reasons. Sometimes patients are stoic and thus hesitant about expressing themselves when experiencing pain. Sometimes clinicians don't do an effective job of adequately and thoroughly assessing for pain. Some caregivers have a personal bias about how much pain control ought to be provided. I think these situations are the big three reasons and mostly circumstantial. The important thing for all caregivers in these unfortunate circumstances is to try to be circumspect and go the extra mile to make sure that a patient's pain is relieved as much as possible.
Q: How have recent drug advances helped in treating pain, like new drug classes and combining short- and long-term medications?
A: I think what these advances have done is extend the range of choices in assisting clinicians in making the best patient-centered choices for pain management. Certainly there are more choices today than ever before, and keeping up with new technologies is critical and challenging. That's where multidisciplinary teams can be very helpful, because the range of effective options for individualized pain control has gotten much more complex. So if you can work with a palliative care team with such expertise, it can make a world of difference for your patients.
Q: What are the issues surrounding dosing of opiates to control pain?
A: There remains some fear in the medical and nursing community of treating a patient with drugs that may have harmful side effects, including dependency and tolerance. On the other side of it, the risk of not treating pain may be more harmful, so it's reasonable to maintain a balance. Certainly from a regulatory standpoint, a few physicians are afraid of being evaluated for inappropriate prescribing. But if you are following standard guidelines and protocols for pain management and control, this should be much less of a problem. Physicians need not be fearful if they are following well established and appropriate care plans that reflect good clinical practice.
Q: The guidelines stress the effectiveness of multidisciplinary teams in managing these patients. What steps should primary care physicians take to ensure that their patients have a network of resources?
A: I think that in many communities there are specialized teams and other resources that can provide an effective multidisciplinary approach to palliative care. Not everywhere, but most places. I think we are still sorting out exactly what the right combination of expertise within specific team members should be and when they are most effective, but I also believe that it takes a lot of different types of expertise to think and manage these often complex patients. Unless primary care physicians have special training in areas such as psychosocial assessment and intervention, they will have a hard time managing all the complexities by themselves. So, it behooves the primary care physician to seek out and understand how to access these dedicated palliative care teams and services when they are available. On the other side, it behooves the health systems that provide services to engage primary care physicians.
Q: When should a physician talk to the patient and family about advance directives?
A: This should be a part of the internist's normal routine with his or her patients. For those with chronic illnesses, whenever new information is obtained that can influence prognosis (for example, diagnostic and clinical evidence of worsening), hospitalization, or a change in the patient's wishes and preferences, it is appropriate to revisit and modify the care plan, including a re-evaluation of the patients advanced directives.
Q: Should advance care planning/directives be coordinated by the primary care physician? Who else besides the family and patient should be involved?
A: Advanced care planning can and should be coordinated by primary care physicians whenever possible. Including additional assistance from palliative care teams, other physicians, nurse and caregivers, close friends, clergy, etc. can all be helpful, but it should be left up to the patient whenever possible as to who should be included in this process.