Questions and Answers
Pain Management at the End of Life
Discussion Questions
- Pain Management and Medication
- Working With Family
- Working With Non-Hospice Providers
- Complementary Treatment/Therapy
- Other
HFA’s 13th Annual Living with Grief® Teleconference, Pain Management at the End of Life: Bridging the Gap Between Knowledge and Practice, was broadcast via satellite on April 5, 2006. Many viewers called into HFA’s question line during the teleconference, but not all questions could be addressed by panelists during the live program.
Panelists Yvette Colón, MSW, ACSW, BCD, Ken Doka, PhD, MDiv, William M. Lamers, Jr., MD., Brad Stuart MD, and Douglas Weschules, PharmD, BCPS, individually have answered those questions that were not able to be addressed during the teleconference. Their brief biographies are below.
Yvette Colón, MSW, ACSW, BCD, is the director of education and internet services at the American Pain Foundation. She is on the faculty at Smith College School for Social Work, and she has published and lectured extensively on end of life social work practice, pain management, psychosocial oncology, diversity and technology-based social work services. Ms. Colón serves as co-coordinator of the Association of Oncology Social Work’s Pain & Palliative Care Special Interest Group, an editorial board member of the Journal of Social Work in end-of-life and palliative care, and a governing board member of the Intercultural Cancer Council. She is a member of the Steering Committee of the Emerging Network of Social Workers in End-of-Life and Palliative Care and recently served on the Board of Directors of the National Association of Social Workers. Ms. Colón holds a master's degree in social work from Smith College School for Social Work and currently is a Ph.D. candidate in clinical social work at New York University.
Kenneth J. Doka, PhD, MDiv, is a Professor of Gerontology at the Graduate School of The College of New Rochelle. He is also Senior Consultant to Hospice Foundation of America. Dr. Doka has written or edited 16 books and published 60 articles and book chapters. He is editor of Omega, a professional journal, and Journeys, HFA’s monthly bereavement newsletter. Dr. Doka was elected President of the Association for Death Education and Counseling (ADEC) in 1993. He was elected to the Board of the International Work Group on Dying, Death and Bereavement in 1995, and served as chair from 1997 to 1999. In 1998, ADEC recognized him for outstanding contributions in the field of death education. Dr. Doka is an ordained Lutheran minister.
William M. Lamers, Jr., M.D., is a physician trained in both psychiatry and child psychiatry who founded one of the first hospice programs in the United States, Hospice of Marin. He has been a member at the University of California, San Francisco and the University of Calgary, in Alberta, Canada. Dr. Lamers has lectured and worked as a hospice consultant in almost every state and in many foreign countries. He is a member and former president of the International Work Group on Death, Dying and Bereavement (IWG), and has served on the bioethics Committees of the Foothills Provincial Hospital (Calgary) and the Los Angeles County Bar Association. He has authored and co-authored numerous professional papers on hospice and related subjects. He is an experienced medical-legal expert witness in matters related to dying, death, pain management, emotional distress and murder. He is the medical consultant to the Hospice Foundation of America.
Brad Stuart, MD, Senior Medical Director of Sutter VNA and Hospice of Northern California, received his medical degree from Stanford University in 1977. Dr. Stuart is the principal investigator of research for the Advanced Illness Management program, which integrates home health care and hospice to provide concurrent disease-modifying and palliative care to seniors with late-stage chronic illness in the home setting. Dr. Stuart was the primary author of the National Hospice and Palliative Care Organization’s Medical Guidelines for Prognosis in Selected Non-Cancer Diseases. He has been featured frequently on national television on the topics of hospice and end-of-life-care issues. He is a cancer survivor, and serves on the Board of Directors of the National Coalition for Cancer Survivorship. He has published widely, and lectured internationally, on medical, psychological and spiritual issues at the end of life.
Douglas J. Weschules, Pharm.D., BCPS, is vice president of clinical services for excelleRx, Inc., a Philadelphia-based company that provides medication consultation and pharmaceutical distribution services nationwide. Dr. Weschules earned his bachelor's degree and doctor of pharmacy degree from the University of the Sciences of Philadelphia. Prior to joining excelleRx, Dr. Weschules was a clinical pharmacist for Thomas Jefferson University Hospital in Philadelphia. His current responsibilities include: editor-in-chief of the adult and pediatric Medication Use Guidelines for excelleRx, participation with its research and publications committee, and participation with its ethics committee. He serves as an external reviewer for the peer-reviewed journal, Pain Medicine. Dr. Weschules achieved his board certification in pharmacotherapy in 2004.
Q. A panelist in Segment 2 made the statement: “Treat a patient’s suffering with opioids and you’ll just have a sicker patient.” This statement needs more attention and inquiry. Can the panelist elaborate? Oregon
A. There is a difference between 'suffering' and 'pain,' at least as we use the terms in hospice work. During the teleconference a panelist said something to the effect that opioids were not the treatment of choice for 'suffering' but they were very effective in treating 'pain.' 'Suffering,' as we know it, consists of social, psychological and spiritual elements usually compounded by physical pain, disability, fears, insomnia, worries, anxiety, depression...among other things. The element of pain can usually be brought under control in a short period of time by using analgesics, including opioids, if indicated. Suffering, on the other hand, may diminish as pain is relieved, but usually requires attention to all the details that contribute to the patient's feelings of overwhelming distress. It takes time and the development of a caring relationship to unravel the components of an individual's suffering. Medications by themselves do not relieve suffering. They can relieve some of the symptoms of suffering, but suffering is a more 'global' condition than pain alone.
Q. Has regional anesthesia been explored as a means of pain management? Please refer to the case study used in the teleconference of the 28 year old with cervical cancer. (For example, epidural or nerve block.) Pennsylvania
A. Regional anesthesia is frequently employed to manage severe pain that has proven to be intractable to standard analgesic treatment, especially for pain that is neuropathic in origin. However, those usual methods, including oral, sublingual or rectal opioids and adjunctive medications, with resort to subcutaneous or intravenous routes of administration if necessary, should be employed first. In addition, access to regional anesthesia is easier for patients admitted to hospitals or inpatient palliative care than for those who wish to remain at home. This is why the panel emphasized so strongly the rational use of opioids, especially methadone, for management of severe pain with a neuropathic component.
Q. Can the panel comment on whether anyone is using buprenorphine in the end-of-life settings for pain management? Oregon
A. Buprenorphine is a partial mu opioid receptor agonist that has been used for the treatment of cancer pain and is effective and well tolerated. However, it has some unique characteristics that limit its utility. Being a partial mu opioid agonist, it has the potential to precipitate opioid withdrawal in patients rotating to this drug from previous opioids. Also, it has a ceiling to its analgesia, unlike the other pure mu opioid receptor agonists (e.g., morphine, oxycodone, fentanyl). Once this ceiling dose is reached, buprenorphine may produce a reversal of pain relief. It is also metabolized by liver enzymes such as Cytochrome P450, 3A4 and 2C8 and therefore has the potential to interact with many medications. It is also poorly absorbed orally and therefore is usually administered nasally, sublingually, subcutaneously, intramuscularly, or intravenously. In addition, a new transdermal formulation is being developed, which may expand the current use of the drug for the management of cancer pain. For more information about the use of this opioid in the management of cancer pain, I highly recommend the following reference: Davis, M.P. (2005). Buprenorphine in cancer pain. Support Care Cancer, 13, 878 - 887.
Q. What does the panel think of the use of PCAs in home care settings? California
A. PCA (Patient Controlled Analgesia) is usually not indicated in home care settings. The pain of most home care hospice patients is controlled these days by a flexible combination of both long-acting and short acting opioid analgesics. The long-acting analgesic is the basic dose; the short-acting opioid analgesic is titrated to meet the changing requirements of the patient. The disadvantage of PCA in hospice home care is the need to maintain an IV line. The cost of the PCA apparatus is also a factor. If excellent pain management can be achieved without PCA, the hospice is going to save money over what PCA would cost.
Q. What role does nursing play in pain management? Ohio
A. Nursing plays a central role in pain management in hospice care. The hospice nurse begins with a thorough history and physical evaluation of the patient. This includes a careful assessment of pain including its location, intensity, duration and treatment. The nurse reviews all information with the hospice physician (or attending physician) and together they develop a plan to treat the pain and other symptoms. Repeated visits and examinations by the nurse guide the evolution of refinements to the basic plan of care. Control of pain and the prevention of side-effects (like constipation or drowsiness) are central to the plan. Hospice nurses become expert in titrating opioid medications to achieve optimal pain relief together with clarity of consciousness. Just as pain management is central to hospice care, nursing is central to the development of excellent pain and symptom management.
Q. What is the role of the nurse serving as the mediator between the patient in pain and the physician? New Jersey
A. The (hospice) nurse is in an excellent position to serve as mediator between the patient in pain and the physician. The nurse can develop an excellent understanding of the nature, intensity and duration of pain and relay this to the physician who then can provide detailed instructions to the nurse regarding medications and other approaches to provide pain relief. One strategy is for the nurse to track pain over time in a simple graphic (the Comfort Control Chart) which provides a visual representation of the impact of therapies to relieve pain over time. This also gives the physician a permanent record of what works and what does not work in this patient. This graphic (0 = no pain; 10 equals worst possible pain) is the best possible means of letting the physician know how the patient is responding to analgesic approaches.
Q. Every day caregivers reach an impasse in managing pain because the physician cannot distinguish end of life pain management from chronic pain management. What words can caregivers use to confront this impasse? Missouri
A. The patient's pain should be treated regardless of whether it is end of life pain or chronic pain.
Q. Can the panel comment on end-of-life pain management for patients with chronic mental illness? Hawaii
A. End of life pain management for patients with chronic mental illness should take into account the patient's ability or inability to provide caregivers an accurate self-assessment of their pain. Caregivers should look for non-verbal indications of pain or distress, including signs like grimacing, movement, pointing or non-verbal utterances.
Q. In cases of substance abuse patients, how should medication be adjusted? Florida
A. Medication should be adjusted to provide excellent control of pain. If the patient is still abusing other substances, this will require careful, repeated monitoring and observation. This will probably require extra time with the patient. Supplies of medications should be carefully monitored.
Q. What should caregivers do when doctors will not prescribe opioids to a patient because the doctor is reasonably sure that the patient will abuse the medication? New York
A. Assure the prescribing physician that the medication will be in the custody of and dispensed by a responsible person. The responsible person should also keep careful, ongoing records of the amounts dispensed and provide routine reports of medication used to the physician. The physician can exercise some control by dispensing only limited amounts of medication each week after receipt of a faxed, emailed or hand-carried report of drug use during the preceding week.
Q. Can you address the difference in treating men’s pain versus women’s pain? Louisiana
A. There is no major difference between men's pain and women's pain. There may be a difference in the freedom to express pain. Some men (and some women) may be more stoic than others...or even more open in expressing their pain. However, there is no marked difference in pain as perceived by men or women. There are some ethnic variants in expression of pain as well as some cultural variables. The subject is very well covered in Mark Zybrowski's excellent book, People in Pain.
Q. Please address patient refusal to take opioids due to fear of fecal impaction and hallucinations. Pennsylvania
A. These may be reasonable fears based on the patient's prior experience with opioid analgesics. Medications to relieve constipation should be started as soon as opioids are prescribed. Constipation should be addressed openly and repeatedly in all patients receiving opioids. The problem of illusions, delusions and hallucinations resulting from opioid use may be reduced by reducing the dose of opioid or switching to an opioid that is less likely to stimulate sigma opioid receptors. If hallucinations occur primarily at night, leaving a light on in the room may reduce the tendency for visual hallucinations to occur.
Q. Can Dr. Foley give the name of the scale used to assess cognitively impaired patients? Where can we access it? Illinois
A. One of the most frequently asked questions by viewers during HFA's recent 2006 teleconference was about a reference that Kathleen Foley, MD, made during a panel discussion regarding a method for assessing pain in adults with severe cognitive impairment. This subject is discussed in the HFA Pain Management at the End of Life: Bridging the Gap Between Knowledge and Practice companion book (pages 93 -- 98) in a chapter by Keela Herr, PhD, RN, and Sheila Decker, PhD and gerontological nurse practitioner). Authors Herr and Decker point out that self-report of pain is still the "gold standard," and that adults with cognitive impairments are able in many cases to self report pain. However, there are cases in which cognitive impairment involves loss of language skills and in those cases, surrogate and observational reports should be used, the authors write. Herr and Decker recommend using an algorithm for pain assessment (depicted on page 95; published originally in Geriatrics at Your Fingertips, and used with permission) and observing common pain behaviors (found on Table 1 on page 98). These observations include observing behaviors that include facial expressions, verbalizations and vocalizations, body movements, changes interpersonal interactions, and mental status changes. This table was first published in the Journal of the American Geriatrics Society, 2002, and is used with permission.
Q. I work in ICU. Does the panel have any experience in using bispectral monitor to assess pain levels and showing families that the patient is not over sedated? Minnesota
A. Few hospice programs have ready access to this technology and/or can afford the monitors. I would guess ICU settings might be the only place where this might be used.
Q. My 97-year-old grandmother has spinal stenosis and it has caused her to have a dropped foot. She takes 25 mg of morphine. Is there any other pain medication besides morphine that she can use? New York
A. There are other pain medications that are effective for the management of pain due to spinal stenosis. Commonly, non-steroidal anti-inflammatory (NSAID) medications like ibuprofen are used as first line treatment. However, these medications can be problematic for many patients, especially in elderly individuals as they are associated with a high risk of serious gastrointestinal events like ulcers and bleeding. They also may cause edema, worsening hypertension and congestive heart failure. Another class of medications that is used are the corticosteroids, which also have anti-inflammatory benefits. However, this class of medications is also associated with many adverse events, especially when taken on a long-term basis. A few of these include glucose intolerance, myopathy, Cushing's syndrome, susceptibility to infections, delayed wound healing, osteoporosis, and stomach upset. Opioids such as morphine are generally reserved for those individuals who do not have an adequate response to either NSAIDS or corticosteroids or where the risks of using them outweigh their benefits. Certainly, other opioids such as oxycodone may also be effective. However, if your grandmother is tolerating the morphine well and it is providing pain relief, I would advocate for continuing it.
Q. What indications are there for use of atropine in smooth muscle pain? Oregon
A. Atropine is an anticholinergic medication that decreases the contraction of gastrointestinal (GI) smooth muscle. Therefore, it decreases GI motility. It is an adjunctive treatment for many GI disorders such as irritable bowel syndrome, diarrhea, and duodenal ulcer. Its ability to decrease salivary and bronchial secretions also is useful in the palliative care setting, as many clinicians use this agent for the management of terminal secretions.
Q. What kind of medication regimen can be used for severe pain at the end of life with cancer, but that also allows the patient to remain alert and conversational? Wisconsin
A. Sedation is a commonly seen side effect associated with opioid therapy, occurring between 20 - 60% of the time. This side effect is generally mild and associated with the initiation and upward titration of opioid medications, and is usually transient. However, a number of different determinants influence whether a patient will be more likely to experience opioid-induced sedation as they approach end-of-life. A few of these factors are: type of cancer and metastases, location and intensity of pain, past medical history and co-morbidities, previous exposure to other opioids and adjuvant analgesics, other medications used concomitantly, hydration status, renal and hepatic function, and possibly, genetic factors. Sedation and somnolence are one of the manifestations of opioid-related toxicity, which commonly occurs secondary to high dose opioid use over a prolonged period of time. Metabolites of many opioids cause or contribute to this toxicity; morphine and hydromorphone come to mind. In these situations, rotating to a different opioid may relieve the symptoms of opioid toxicity, allowing the parent drug and metabolites responsible for the sedation to clear from the body. It also may allow the use of less opioid than used previously, due to incomplete cross tolerance. Sometimes, changing the route of administration may also help mitigate some of these symptoms. Use of interventional pain management techniques such as epidural opioids with or without local anesthetics can also provide very effective pain relief and minimize side effects. For many others, however, the simple addition of a central nervous system stimulant such as methylphenidate (Ritalin) to their current pain regimen will allow the continued pain control achieved and alleviate the drowsiness associated with it. Finally, the use of adjuvant analgesics such as antidepressants, anticonvulsants, and/or corticosteroids may also provide additional analgesia that the opioid may not be achieving by itself. Therefore, you may be able to use less opioid if used in combination with one or more of these other medications. It is the responsibility of the hospice or palliative care team to provide patients with adequate and appropriate analgesia and minimize side effects such as sedation. In order to do this, frequent and careful monitoring is needed and open communication is necessary between all members of the health-care team.
Q. Where are we medically in the use of conotoxins or venom cure in pain management because of its opiate type but non-addictive qualities? Michigan
A. Within the past 1-2 years, much attention has been drawn to the FDA-approval of ziconotide, a synthetic conopeptide developed from the venom of the marine snail Conus magnus. Its analgesic properties are unique in that it is a selective blocker of the N-type voltage sensitive calcium channels, which are essential for the nervous system to transmit nociceptive signals. Previously available calcium channel blockers such as verapamil are not selective for a particular type of voltage channel, and therefore also result in non-analgesic effects. Because of this unique mechanism of action, it showed promise in the management of severe pain and muscle spasticity. However, there are a number of limitations to its use. First, it is administered intrathecally, which may limit its use in patients approaching end-of-life. Also, it must be titrated slowly to minimize adverse effects experienced from the drug. The adverse effects associated with this medication can be very bothersome; the most common include dizziness, somnolence, confusion, and delirium among many others. It may be hard to know in a patient with far advanced disease whether the CNS-related changes are due to the medication or the disease process. Finally, it is very expensive - a 5 mL vial (100 mcg/mL) costs in excess of $3000.00. Because of these and other concerns, most clinicians agree that opioids and other adjuvant analgesics still retain their place as the primary agents to treat nociceptive and neuropathic pain in the terminally ill patient.
Q. Please address the use of medical marijuana in pain control. Maryland
A. Marijuana has been studied in the scientific and medical literature and has been shown to have some pain relieving properties. It also can have other effects that may help decrease nausea or stimulate appetite. For many, it may also stimulate a sense of well being ("euphoria.") However, for many others, it may have unpleasant effects, such as anxiety, panic attacks, confusion, disorientation or agitation.
Although marijuana has some properties that can be exploited medicinally, it also has medical problems associated with its use, particularly when it is inhaled as smoke. These problems may include an increased risk of oral, esophageal and lung cancers.
The federal government has deterred the legalized use of marijuana within our current legal health care system. Several states have legalized medical use of marijuana for patients, but the federal government has not allowed physicians to prescribe it. There are many patients who feel that it is not only their right to use marijuana for medical purposes, but they also believe it is their only hope for effective pain relief or symptom management. The field of medicine is conflicted about the use of medicinal marijuana because it clearly has some benefits, but also has properties that are not beneficial and may actually be harmful. There are many other medications that can mitigate pain; these medications continue to be more mainstream choices that physicians offer to their patients.
Q. My Down Syndrome son is unable to tell me when he is in pain for fear of staying out of school. How does one tell that he is in pain? South Carolina
A. Assessing and managing your child's pain may be simple or complex. The care plan should involve active participation by you, your child (as much as possible) and by health care professionals. Pain relief needs may also change over time and should be evaluated on a regular basis. Parents play an important role in helping to manage their child's pain.
If your child cannot tell you about their pain, the assessment of pain must come from observed changes in behavior. Observing and interpreting your child's behavior is very useful when assessing pain. Generally, pain will cause some change in normal behavior. Since parents know their children and their habits better than anyone else, they are in the best position to notice when a significant change in behavior occurs.
When children can't tell you about their pain, it's important to watch for changes in general behavior—like being quiet when normally talkative, restlessness or sudden anger or specific pain behaviors like grimacing, moaning, rubbing, agitation, crying out or confusion. Movement as well as eating and sleeping patterns may change because of unrelieved pain.
Caregivers can be asked for more information about the patient and about themselves, including.:
-- How would you describe the pain that your family member is experiencing?
-- What is most distressing to you about the patient's pain?
-- What do you do when your loved one demonstrates pain behaviors, such as grimacing or moaning?
-- What do you think and feel about your loved one's pain?
-- What impact does the pain have on you, as a member of this family?
-- What concerns do you have about the pain?
-- What questions do you have about the treatment of the pain?
There are also interventions that can be done with families that are focused on the patient, including:
-- Help position the patient with pillows and soft cushions.
-- Massage sore spots and other areas for distraction.
-- Participate in their physical therapy or physical activity with them, if indicated.
There are also interventions that can be done with families that are focused on the family, including:
-- Acknowledging that emotional responses are normal.
-- Addressing the idea of "teamwork" to include the family as members.
-- Teaching coping skills to manage their own emotional responses.
-- Providing information about the nature of pain, medications and their side effects and the roles played by the medical team, specialty providers and family members.
Q. Can the panel weigh in on pain management for patients where the family has decided to withdraw pain management? Hawaii
A. In my experience, families who want to discontinue pain medication are usually misinformed. They fear that pain meds (opioids) will result in premature death, addiction or drug dependency. There is, to some, a stigma associated with using opioid analgesics. I operate on the principle that "All behavior has meaning." I would try to determine what the family hopes to accomplish by discontinuing pain medication. Open discussion will usually reveal the misunderstanding, prejudice or fear behind their wish to stop pain management.
Working With Non-Hospice Providers
Q. Can the panel comment on emergency room physician intervention with hospice patients? Oregon
A. Although a trip to the Emergency Department (ED) is not included in most hospice Plans of Care, a sudden increase in symptoms or fear on the part of patients and family members may bring about a 911 call and an ED visit. The reactions of first responders and ED physicians to hospice cases is highly variable. Many will inquire immediately about goals of care and err on the side of conservative treatment; others tend toward aggressive workup and treatment. ED visits are sometimes appropriate if pain, dyspnea, vomiting or delirium cannot be managed at home; experienced ED personnel can sometimes control symptoms and send the patient back home, or utilize a short-stay admission. If families do not report the fact of hospice enrollment to the ED, hospices may not find out about ED visits and hospital admissions until days later. Hospices should advise patients and families that ambulance rides, ED visits and hospitalization do not fall within the plan of care, and all parties should agree that hospice will be called prior to a decision to call 911. When patients do access emergency services, the hospice medical director should be in contact with the ED and consult with the physician there at least by phone, if not through a consult visit.
Q. What do you believe it will take for doctors to put patients in hospice earlier? Texas
A. It is often very difficult for doctors both to admit that the goal of care is now palliative and to broach the subject of hospice to families and patients. Certainly education of physicians can help. I think though that hospice can also educate others so that families may be more prone to begin a dialog with their doctors about when to refer to hospice. Also hospices should strive to be included in an integrated systems approach to palliative care for late-stage chronic illness. They should establish reciprocal relationships with home care agencies and hospitals that have palliative care programs that capture patients “upstream” from hospice.
Q. Do strict guidelines for admissions limit people going into hospice at all or late? Illinois
A. Late admissions to hospice are a problem. For example, in 2002 almost 35% of hospice patients died in 7 days or less; and between 1995 and 2002, the median length of service fell from 29 days to 21 days. Hospice professionals feel this trend is due to a number of factors. One important factor is the difficulty in predicting the rate of decline to death. Although much is known about the many forms of cancer, in many non-cancer diagnoses physicians consistently over-estimate the length of life left to the patient. Another important factor is the unwillingness of physicians to recommend an end to treatment that attempts to be curative. The causes of this are varied, ranging from the economic structure of medicine, to often ambivalent feelings toward death on the part of physicians, to pressure from the patient and family to "do something, anything" to prevent death. This pressure should not be underestimated, and sometimes results in an individual’s advance directives and stated wishes being ignored.
In addition, many physicians are under the false impression that a person must die within six months to be an appropriate hospice referral. Nothing could be further from the truth; the Centers for Medicare and Medicaid Services has published a letter on the six-month prognosis, affirming that the patient does not have to die within that period to be an appropriate hospice referral. Changing this misconception is, to a large degree, the job of organizations such as Hospice Foundation of America and the 3,000 plus hospices in their local service areas.
Complementary Treatment/Therapy
Q. How open are institutions to complementary therapy? Michigan
A. That depends on the institution; some are totally resistant, others are more open. It may take time and effort to introduce complementary (or alternative) therapies in an institution, but it is always worth trying. Some institutions are closed to anything that is not 'traditional' in terms of Western medicine. Most institutions allow only those procedures that have been approved by the chairs of the various departments. Smaller institutions, in my experience, are generally more open to new ideas than larger institutions. All institutions must be mindful of accrediting bodies, insurance coverage and licensing requirements.
Q. To what extent does the panel find alternative approaches such as acupuncture, homeopathy, and meditation to have been effective in pain management? Virginia
A. Complementary practices have a place in pain management, although their effectiveness has not yet been proven in randomized trials. They are indicated for patients whose belief system encourages their use, and for pain that is not extremely severe, and may be most appropriately used in cases of chronic nonmalignant pain. Most patients with cancer pain require opioid analgesics, although complementary approaches should be used as adjuncts if patients wish to employ them.
Q. Can anyone on the panel speak directly to the use of integrated methodology? Since all pain is perceived in the mind, can you speak directly to specific modalities that can and should be integrated into the pain management practices commonly used? Please reflect on the gate control theory, Dr. Gary Walcot’s work teaching pain coping strategies using relaxation and hypnosis, or Dr. Richard Davison’s work at the University of Wisconsin. South Carolina
A. By “integrated methodology,” we assume you mean complementary therapies and methods that use focused attention, hypnosis, imagery and the like. It is true that all pain is perceived in the mind. However, that does not mean that all pain can be controlled by the mind. Certain practitioners, and certain patients, have achieved success in this area, but much training and practice are required of both clinicians and patients. For very severe pain, such as that seen in advanced cancer, opioid analgesics provide effective and reliable symptom control, particularly if training in and experience with integrative methods are lacking.
Q. Are there reimbursements from insurance companies for these alternative therapies?
A. Hospices, hospitals, and managed care plans in Medicare can provide alternative treatments under discretion they have through per diem, prospective, and capitated payment systems, respectively. And the law specifically provides for Medicare coverage of chiropractic spinal manipulation by chiropractors, as well as massage therapy by physical therapists when the treatment can be demonstrated to help improve a patients health status. Insurers and managed care plans are offering complementary alternative medicine (CAM) options more frequently, and integrated medical clinics and private practices are spreading. As more evidence is published on the safety and effectiveness of CAM practices, they are more likely to be incorporated into health care treatment protocols.
However, even where there is health plan coverage, it is often limited. For example, the CAM benefit may cover only one or a few CAM services. Other limitations include ceilings on the number of visits covered, restrictions on clinical applications, and fixed qualifications for the type of practitioner; for example, ten acupuncture visits might be covered for pain management provided by a medical doctor, and thus would not be covered if provided by a professionally-trained acupuncturist.
Q. Does the panel have a consensus on the definition of end of life? Texas
A. In the broadest way, it may be defined as when the realistic goal of medical treatment becomes palliative -- that is that there is really no longer any viable hope of cure or meaningful extension of life.
Q. Doctors are not reimbursed well for their time regarding pain management. Can the panel give tips for doing it quickly and efficiently and becoming politically active so people are paid for the work they do? Ohio
A. Pain management, like other aspects of clinical medicine, gets easier and quicker with practice. Gaining experience with a hospice or palliative care program is one way to see enough patients to get past the steep part of the learning curve. The reimbursement system is biased toward procedures and against “face time.” Reimbursement patterns simply reflect what is valued by our culture. Becoming politically active may help to change this, but the pattern is deeply ingrained and it will take time to evolve. The aging of the population and the increasing prevalence of chronic illness will help.
Q. Are you seeing a backlash regarding pain management and end-of-life care in the press and the religious right? How do we deal with this? South Dakota
A. The Schiavo case seemed to bring out in some circles a concern with hospice and certainly evidenced a misunderstanding of some of the goals of palliative care. Certainly some law enforcement agencies are worried that the wide use of pain medication may lead to greater diversion of drugs. That, however, seems more a factor in chronic pain management than at the end-of-life. As to religious groups, I think it is helpful, in calm times, to reach out to them and to meet with local clergy and church groups and educate them on who hospice is and what hospice does.
Q. How can we get those living in rural areas the help that they need? Texas
A. Until there is improved reimbursement for travel for rural hospice programs, there will be fewer visits to remote patients. More must be done to explore the use of the Internet to make use of two-way video so that some portions of examinations and follow-up visits can be done from remote sites. Rural hospice programs can develop video lessons to be seen by on-site caregivers (family, friends and local volunteers). Hospice still has not developed optimal use of local volunteers. In rural areas these could be church groups, 4-H clubs, social groups, or co-operative associations. We have learned to make use of untrained volunteers who can be gradually trained to do many of the things that an aide would do. Hospice can organize volunteers on an area-wide basis or county basis as well. I have always been amazed at the desire of people to help one another.
Q. Can the panel discuss an inappropriate referral to hospice when “end of life” is not truly end of life? Rhode Island
A. Often when there is no longer any viable hope of medical cure or meaningful extension of life, the goal becomes palliative -- offering comfort oriented care. In such cases, a referral to hospice is appropriate. Naturally, there should be a dialog if other members of the medical team or the family do not think that palliative care is the only appropriate medical goal.
