Steven J. Baumrucker

OxyContin ®, the media, and law enforcement

American Journal of Hospice & Palliative Care Volume 18, Number 3, May/June 2001 The treatment of chronic nonmalignant pain with strong opioids has been a true revolution in pain medicine and palliative care, and is reported to be a “safe, salutary, and more humane” treatment for patients with severe, chronic pain.1 Pain physicians all over the country are educating primary care doctors and allied health professionals on the need to attend to severe chronic pain, and to stop seeing these patients as “drug seekers.” Lawsuits have emerged in cases where patients were not given adequate pain control; palliation is becoming the standard of care across the country, as physicians, nurses and other health professionals try to come to terms with the new paradigm. With potential lawsuits for undertreating pain on one side, and DEA prosecution for overtreating pain on the other, practitioners of palliative care and pain medicine are operating in an increasingly stressful context. This environment would be difficult enough without the added stress of OxyContin® (Purdue Pharma) diversion and abuse, which has reached epidemic proportions in some parts of the country. Burglaries of pharmacies have become so common in some areas that at least one pharmacy chain in the northeast has gone to the extreme of taking OxyContin off its shelves.2 OxyContin is a sustained-release form of oxycodone, an opioid analgesic of similar potency to morphine. Abusers of the drug crush the tablets and ingest the powder intranasally, or intravenously.3 The high of the drug taken this way is extremely euphoric, and is taking over from crack cocaine and marijuana as the number one drug of abuse in some areas of the United States.4 The pill has been a huge success for its manufacturer, Purdue Pharma, reporting a 95 percent leap in sales in 2000, translating to

Complementary medicine and the scientific method: mainstreaming proven "alternative" therapies.

600 million in gross revenue.5 The efficacy of OxyContin in chronic, severe cancer pain has been well established, and its superiority to morphine with regard to side effects has been reported.6 The use of powerful analgesics in nonmalignant pain has been more difficult for some providers to accept.7 As stories about oxycodone abuse increase, the probability of practitioners becoming increasingly fearful of prescribing it increases. The volume of stories in the media recently has certainly fueled the fire of fear; a search in one of the Internet news service registries netted more than 70 articles in major markets on the drug in the last three months alone. Some of the accounts are disturbing, indeed, and include:

Palliative care, burnout, and the pursuit of happiness

American Journal of Hospice & Palliative Care Volume 19, Number 6, November/December 2002 Allopathic medical practitioners may be surprised at their patients’ level of interest in complementary and alternative medicine (CAM). A study in 2000 of 50 prostate carcinoma patients undergoing radiation therapy demonstrated that over 35 percent relied on “complementary” practices their doctor did not prescribe.1 The doctors were also polled and wildly underestimated the number at 4 percent, illustrating that physicians are, for the most part, oblivious to unconventional health practices that their patients use routinely. As early as 1993, expenditures by the public for “alternative” therapies exceeded the

Post-thoracotomy pain syndrome: An opportunity for palliative care

12.8 billion spent out of pocket annually for all hospitalizations in the United States.2 Complementary and alternative medicine is a powerful force, for patients at least; unfortunately, it is a subject most practitioners of Western medicine know little about. The myth, of course, is that alternative therapies are sham, marginal therapies promoted by kooks and quacks, and therefore have no value and can safely be ignored. In truth, some therapies are, indeed, based on nothing more than the placebo effect. However, lumping all unconventional therapies together makes it too easy to point out the junk and indict all the others by association. If one is interested in reality, rather than posturing, then the truth lies somewhere between the two poles of total rejection of anything outside standard medicine and total openness to any idea, regardless of the evidence. Glucosamine sulfate is a stellar example of an erstwhile alternative therapy that has become part of mainstream medicine. Previously touted by alternative medicine practitioners, glucosamine is an aminomonosaccharide component of proteoglycans required for cartilage synthesis. It has few, if any, significant drug interactions and a similarly sparse side effect profile. A significant advantage over traditional nonsteroidal antiinflammatory drugs (NSAIDs) is the lack of complications from gastrointestinal bleeding. For years, however, there was little evidence that glucosamine actually lived up to its claims. Holistic providers asserted that glucosamine repaired joint surfaces and made other seemingly outlandish statements. The substance did attract the interest of researchers as time went on, and evidence indicating its efficacy mounted. Recently, this interest culminated in a landmark Czech study—a three-year, randomized, placebo-controlled, double blind study—which demonstrated that treatment with glucosamine slowed the progression of knee osteoarthritis.3 Disease modification is something that traditional NSAIDs have never proven, and subsequently, more and more practitioners have accepted glucosamine as a standard adjunct to osteoarthritis therapy. Sounding board

Amyotrophic Lateral Sclerosis and Physician Assisted Suicide

I was attending a lecture at the Third Joint Clinical Conference of the NHPCO/AAHPM/HPNA (National Hospice and Palliative Care Organization, American Academy of Hospice and Palliative Medicine, and Hospice and Palliative Nurses Association) in New Orleans last week when I had an epiphany. The talk was by John Finn, MD, the medical director of Hospice of Michigan (a large, multicenter hospice organization based in Detroit). He was speaking on “selfpreservation skills for the hospice professional” to a packed room. While Dr. Finn spoke, I suddenly realized how relevant his talk was to me and to many practitioners in our field. My “bolt of lightning,” as I will explain, struck as I pondered his words about the dangers of pessimism and cynicism and the benefits of optimism and trust. Professional burnout is not confined to palliative care, or even to medicine. “Burnout” is a response to unremitting stress and is described as a “syndrome of depersonalization, emotional exhaustion, and a sense of low personal accomplishment”1 resulting in depression, anxiety, and degraded interpersonal relationships. Overt symptoms are legion and include irritability, appetite disorders, memory disturbances, lack of impulse control (e.g., shouting, acting out), and even self-destructive behaviors. Given the stresses in dealing with death-and-dying issues, paperwork, regulatory upkeep, distressed families, late or inappropriate referrals, and marginal reimbursement, it is no surprise that nurses, social workers, aides, chaplains, physicians, and all other hospice and palliative caregivers are at risk. Before proceeding, it should be noted that palliative care physicians report lower levels of burnout and other stress-related disorders than do other specialists, at least in the United Kingdom, where these studies were performed.2 English palliative-care consultants report less stress from overload than their colleagues and relate gratification from the positive relationships they enjoy with patients. To further illustrate the point, compare the 28-percent “burnout and psychiatric disorder” rate in the UK study of oncologists and palliative care specialists2 to the 76 percent burnout rate among internal medicine residents in Rochester, Minnesota1 for a stunning juxtaposition. What was extremely interesting in the UK palliative care study was that burnout was significantly more common in those who felt they were insufficiently trained in the communication skills required for the job.3 In Dr. Finn’s talk, he referenced an article by Jim Loehr and Tony Schwarz titled “The Making of a Corporate Athlete,” which appeared in the January 2001 Harvard Business Review.4 Sounding board

Palliative care in amyotrophic lateral sclerosis: a new tool in the fight against an old enemy.

is a specialty in search of a niche. Referring providers often do not know what palliative care services do, or how they can help them to care for their patients; misconceptions that palliative care is just for patients at end of life or that it is synonymous with anesthesiology pain services abound. It will take years of providing services that improve the quality of life of thousands before palliative care becomes a household word. Identifying syndromes that are easily ameliorated, affect thousands every year, and commonly go untreated or unrecognized would not only be an opportunity to serve patients, but would provide a chance for palliative care to increase its profile. Due to an apparent statistical fluke over the last couple of weeks, our palliative care service has noted an increase in patients presenting with persistent pain after surgical thoracotomy. The patients, who generally have had moderate, persistent pain over the surgical site, following the intercostal space, report burning, tingling, and occasionally sharp pains that are constant and unremitting. These persons often reported that their surgeon told them that post-surgical pain was to be expected and to “live with it.” Until the creation of palliative care services around the country, patients with similar stories often had no other option. New data have emerged, however, that may improve outcomes and decrease patient suffering over the long term. Chronic post-thoracotomy pain syndrome (PTPS) is defined as “chronic dysesthetic burning and aching in the general area of the incision that persists at least two months after thoracotomy,”1 and is generally considered to be a post-surgical neuropathic syndrome of one or more intercostal nerves. Up to 60 percent of patients report persistent pain a month after surgery,2 and 35 to 50 percent report pain at one to two years.3 Most patients experience mild to moderate pain; the incidence of severe pain is 3 to 5 percent.4 Given the sheer numbers of thoracotomies performed in this modern age, the data indicate that the number of people suffering chronic sequelae is also large. Women and those with significant pain on post-op day one seem to be at highest risk for PTPS.2 In 1996, Katz followed patients 18 months after lateral thoracotomy and found that early post-operative pain was the only factor that significantly predicted longterm pain.3 The study showed a significant relationship between higher pain scores at 24 and 48 hours and longterm pain. However, cumulative morphine use was similar in both groups. Given that patients with decreased pain in the immediate post-op period had a decreased incidence of long-term pain, it would seem logical that improving post-operative pain control might proactively prevent chronic complications. However, in 2000, Hu published a study that seemed to argue against this concept. Hu’s project, a retrospective review of 159 patients

Continuation of feeding tube.

it may take years to die from it, even though the disease continues to debilitate the person in the process. Mr P had declined slowly for 2 years before going into respiratory failure. Thus, he had much time to think about the inevitability of the disease and what choices he wanted to make in the terminal stages of the disease. Thus, his rather sudden request of physician-assisted suicide (PAS) is somewhat suspect. I would lay blame on the physician for this situation’s arising in the first place. Early on in the disease course, it is the responsibility of the physician to completely educate the patient about what the disease course will entail. This should always include details about what options and decisions the patient will inevitably face. The physician must inform the patient that he or she may not want “everything that modern medicine has to offer” and that this is not necessarily a wrong decision on his or her part. Life-sustaining therapy, defined as any artificial device or intervention that compensates for the failure of an organ system that would normally result in death, is not always in the patient’s best interest, although it is his or her choice, not the physician’s. Mr P initially chose this with the tracheostomy. I would argue that the physician should have, in essence, talked Mr P out of getting a tracheostomy by describing the likely scenarios that may arise, including the case described here. In doing this, the physician should always respect and foster the patient’s autonomy and self-direction to make these types of decisions. Ultimately, most ALS patients develop hypoventilation, which leads to elevated CO2 levels. Patients who are hypoventilating will often become hypercapnic and hypoxic at night and complain of a morning headache, restlessness or nightmares, and poor-quality sleep, which should be detected by a good review of systems done by the physician during a clinic visit. There are now excellent options for noninvasive ventilation, which do not require a tracheostomy. Noninvasive, positive pressure ventilation by mouth Case Study

Discontinuing life support: whose call?

explored the dismal state of palliative care in the treatment of patients with amyotrophic lateral sclerosis (ALS), a rapidly progressive and fatal motor neuron disease.1 Hospice and palliative care programs seemed to be losing the public relations battle where ALS was concerned; a patient was even seen on a nationally televised news show, discharging himself from hospice care and choosing physician-assisted suicide with Dr. Jack Kevorkian. The panoply of tools we use for the successful palliation of cancer pain, congestive heart failure, renal failure, chronic obstructive pulmonary disease, and other terminal conditions seemed to be ineffective or irrelevant for ALS patients, who complained of air hunger, dysphagia, motor weakness, thick mucus secretions, and pseudobulbar effects, such as inappropriate affect. Many hospice professionals expressed a loss of confidence in the power of palliative care to make the last days of ALS patients comfortable and fulfilling. As always, there was a call for more research. In 1999, a Columbia University study described a cohort of 121 ALS patients that was followed to assess when patients underwent certain milestones, including use of adaptive aids, pulmonary support, enteral feeding, and hospice care. It was interesting to note that only 37 percent of patients enrolled in a hospice program, 48 percent had a power of attorney and, amazingly, only 18 percent had a “do not attempt resuscitation” order.2 Someday, there will likely be a cure or a successful treatment that will arrest the progression of this terrifying disease. Until that time, the primary care provider must rely on symptomatic therapies. Thankfully, some significant progress has been made in the treatment of ALS in the palliative setting over the last several years. One of the new tools available to the provider of services to patients with motor neuron diseases is the book, Palliative Care in Amyotrophic Lateral Sclerosis,3 edited by David Oliver, Gian Domenico Borasio, and Declan Walsh (Oxford University Press, 2000). This new text has an international feel (the editors are from the UK, Germany, and the US [via Ireland], respectively) and covers models of care in Japan, the Netherlands, South Africa, and other countries. The book begins with a cogent 16page review of the current concept of ALS that includes hypotheses about the pathogenesis of the disease and drugs that may alter survival. (So far, only riluzole, a glutamate release inhibitor has shown any efficacy in human studies, and that was disappointing.4) The following is a discussion of palliative care in general, and

The ABMS, the ABHPM, and the future of a specialty.

Ms P is a 45-year-old woman with a history of persistent coma since an automobile accident 8 years ago. She was admitted to a residential hospice house after prolonged attempts at rehabilitation were unsuccessful. During the original hospitalization, a feeding tube was placed. A recent electroencephalogram (EEG) showed diffuse brain-wave slowing, consistent with her previous studies. Ms P is unresponsive and has been since the original injury. Her husband states he cannot bear the thought of losing her and has consistently requested that the feeding tube be continued. Her parents, on the other hand, argue that she never wanted to be kept alive artificially and that the husband is only concerned about an insurance cash benefit that continues as long as Ms P is alive. They have threatened to take legal action if the feeding tube is not removed. Ms P never executed an advance directive. An ethics consult was requested.

Sedation, dehydration, and ethical uncertainty.

Mrs. D is a 69-year-old female with carcinoma of the breast metastatic to the brain and bone. She has been on a respirator for the last month following an episode of acute respiratory distress syndrome (ARDS) and sepsis. Her condition has declined, and she has suffered cardiopulmonary arrest on two occasions, being “successfully” resuscitated each time. Mrs. D’s husband has refused to consider withdrawing therapy, although she has been unresponsive since starting on the respirator. He told the staff his daughter died in his arms of leukemia years ago, and that experience caused him to want to prolong his wife’s life with “every fiber of my being.” The previous day, a neurologic consultant had declared Mrs. D to have a flat EEG. She showed no response to noxious stimuli, and her pupils were fixed and dilated. An apnea test was not performed, as she was hypercapneic and the team felt it would not be accurate. Mrs. D’s husband agreed to terminate her ventilatory support after being informed that his wife was “brain dead.” After removing the endotracheal tube, Mrs. D. continued to breathe spontaneously at a rate of 16/min. She continued to show no response to outward stimulus. By the next day, she was showing some signs of decline, and analysis of her arterial blood gas (ABG) level showed increasing hypercapnea. Mrs. D’s husband was overwhelmed by this turn of events and felt he should demand that the endotracheal tube be replaced. The medical team believed such an intervention to be hopeless. An ethics consult was requested.