Blog Posts (10)
January 23, 2017
|Written By Myra Christopher|My mom was a steel magnolia (i.e., southern and perfectly charming), but she had a steel rod up her back. After her first surgery for stomach cancer at age 53, she refused pain medication because she said that she “could take it.” She was young and strong and committed to “beating cancer.” After nearly two years of chemotherapy, radiation and two more surgeries, the cancer won. Eventually, I watched her beg nurses to give her “a shot” minutes before another was scheduled and be told they were sorry but she would have to wait. I could tell by the expressions on their faces they truly were sorry.
Calls of Desperation
When the Center for Practical Bioethics began more than 30 years ago, I frequently had calls and letters from other family members telling me that an elderly loved one was dying in terrible pain and that the care team refused to give pain medication more often than scheduled or to increase the dose because they were told their loved one might become addicted and/or because a higher dose of morphine might affect the patient’s respiration and hasten death. · ICU nurses regularly reported calling physicians and pleading for orders to increase pain medication only to be told, “Absolutely no and do not call again!” · Physicians told me about patients who refused medication and suffered unnecessarily because they believed their pain was punishment from God and that their pain was “redemptive.” · A case I will never forget involved a father who coaxed his son dying of bone cancer to “be a man” and refuse the pain meds his doctor had prescribed. The father, who adored his child and was deeply grieving his impending death, told me, “At least he will never be a junkie.” · In one study of nursing home residents with cancer pain, nearly a third reported receiving nothing for their pain – not even Tylenol.
Progress and Problems
Efforts to address the under-treatment of pain in the United States led to more abundant prescribing of opioids and reduced suffering. At the same time, the rate of addiction rose dramatically, particularly addiction to pain medications, specifically opioids. Thousands of unintended deaths associated with these powerful drugs led to a well-organized national campaign to reduce their being prescribed. Let me be clear, in some cases opioids have been prescribed too freely and physicians need much more training about when and how to prescribe them. I cringe when I hear about the dentist who prescribed a 30-day supply of OxyContin for a teenager who had her wisdom teeth extracted. My heart breaks when I hear about the young man who died of an opioid overdose a year after being given a prescription for pain meds after spraining his ankle in a football game and the young mother who was given Percocet after a caesarian birth, used them to help with the stress of a new baby and became addicted to them. These are tragic situations.
The opioid epidemic is a wicked problem, and it must be addressed. However, I believe that current efforts that focus almost exclusively on reducing opioid prescribing do not address the complexity of this problem and will have serious unintended consequences for those who struggle to live with chronic pain and even, possibly, those who are dying. Those were the concerns that caused me to speak out against the CDC Guideline for Opioid Prescribing for Chronic Pain published last year, which is, in my opinion, primarily an attempt to contain the opioid epidemic – NOT an effort to improve chronic pain care. In recent months, stories have begun to emerge from people who live with chronic pain being told that their physician will no longer prescribe opioids or that their pharmacy didn’t have an adequate supply of opioids to fill their prescription. Last week, two things happened that caused me to write this blog. First, Judith Paice, PhD, RN, and Director of the Cancer Pain Program at the Feinberg School of Medicine at Northwestern University, wrote the following email to me which I share with her permission: This has been a horrible month for trying to manage pain. January is always “prior authorization” month, meaning I have to call and fight the insurance companies to get medications approved – working in oncology has always provided a slight advantage in that with some extra documentation, peer-to-peer review and conversations with medical directors, I could usually get the medication approved. Not this year. I could not get a patient with mouth sores and metastatic breast cancer a fentanyl patch. And an HIV+ hemophiliac who has been on OxyContin for 8 or 9 years was denied access despite receiving good relief without any aberrant behavior. Even long-acting morphine is being denied. And I have PCPs calling me to prescribe opioids for their patients “because the CDC guidelines prohibit them from doing so” (not true, but they are frightened). Thank you and all on this email for all you do. We simply cannot return to our previous practice of withholding opioids except for the dying. Second, I received a call from Jonathan, one of our PAINS Project Citizen/Leaders, a group of 50 people who live with or care for a family member who lives with chronic pain. Jonathan called to tell me that his insurance provider had refused payment for his pain meds which cost $3,500 per month. Jonathan is one among many in his family who was born with HbS beta thalassemia, a rare form of Sickle Cell Disease (SCD). He is in his mid-to late forties and very close to his family, which owns and operates a home remodeling business. Currently, there are four generations in his family living with SCD, and Jonathan appears to me to be the patriarch of his clan. He is a tall, thin, handsome young man who is readily memorable for his boyish smile, the mischief in his big brown eyes, and his commitment to helping others. He limps; most often he wears a boot on his right foot, and sometimes he needs to walk with a cane. The cold weather exacerbates his pain, and his limp is worse in the winter months. He describes the pain in his joints like a “giant toothache” in whichever joint (or joints) is affected by platelets taking their revenge. Access to and reimbursement for Jonathan’s pain medications will NOT solve his problems associated with Sickle Cell Disease. That requires a comprehensive chronic disease management program, including integrative pain care that includes opioids. Like most chronic pain sufferers, Jonathan’s situation is complex. It cannot be resolved with just an opioid prescription, but the meds help him to function.
A Wicked Problem
Simple solutions will not solve the opioid epidemic or the under-treatment of pain – two critically important public health issues confronting our country. Both are wicked issues. In 2007, the Australian Public Service (APS) published a report on addressing “wicked” social policy issues. In a letter at the beginning of the report, then APS Commissioner Lynelle Briggs wrote, “The Australian Public Service (APS) is increasingly being tasked with solving very complex policy problems. Some of these policy issues are so complex they have been called ‘wicked’ problems. The term ‘wicked’ in this context is used, not in the sense of evil, but rather as an issue highly resistant to resolution. Successfully solving or at least managing these wicked policy problems requires a reassessment of some of the traditional ways of working and solving problems in the APS. They challenge our governance structures, our skills-base and our organizational capacity. It is important, as a first step, that wicked problems be recognized as such. Successfully tackling wicked problems requires a broad recognition and understanding, including from governments and Ministers, that there are no quick fixes and simple solutions.” We simply cannot allow people like Jonathan and the nearly 30 million Americans living with “high impact chronic pain” – pain that is disabling or those who are seriously ill and dying – to become collateral damage from policy efforts to contain the opioid epidemic. We need access to comprehensive pain care for all those who live with chronic pain and addiction.
September 1, 2016
Raising Pain Awareness
Penney Cowan has lived with chronic pain for most of her life and is the Founder of the American Chronic Pain Association
. Her advocacy work is peppered with the creation of innovative projects and programs. Perhaps, one of the most powerful of her ideas was establishing September as Pain Awareness Month in 2001.
This September will mark the fifteenth anniversary of Pain Awareness Month. That it has endured over time is remarkable given all the other causes that vie for public attention. However, in my opinion, it has never reached its potential.
It was my privilege to be one of those involved in establishing a Kansas City Affiliate of the Susan G. Komen Race for the Cure®
; yesterday marked the 20th
anniversary of the Kansas City Race. Each year, thousands of breast cancer survivors, their friends, family and others walk and run to raise public awareness and resources to support multiple organizations in our community that advocate for those diagnosed with breast cancer. Yesterday nearly ten thousand people participated in the Race in Kansas City, and there are now Komen Races in more than 140 communities across the country. Chronic pain is worthy of at least as much public attention as is breast cancer, and I think I could make an argument that it is worthy of even more attention.
It is estimated that one in eight women in the U.S. will be diagnosed with breast cancer in their lifetime.
One in three Americans live with chronic pain. So, let’s learn from Race for the Cure and other successful public education campaigns and help Penney Cowan make her vision a reality. It may not happen this year, but we all need to do everything we can to leverage the groundwork that has been laid by ACPA and other pain advocacy organizations and make as much noise as possible in September about chronic pain as a disease, the need to fully implement the National Pain Strategy Report, and sharing stories of those who live with chronic pain and have persevered in spite of it.
Pain Awareness Month in Kansas City
PAINS-KC is a group of about fifty “Citizen/Leaders” who have met with leaders of PAINS on a monthly basis for more than three years. This year, they have taken the lead in developing a plan for September as Pain Awareness Month in Kansas City. We want to share just a couple of things they are doing in hopes that you will consider doing something similar in September or whenever you can.
PAINS Update has mentioned Dr. David Nagel’s new book, Needless Suffering: How Society Fails Those with Chronic Pain
. We are delighted that Dr. Nagel will be in Kansas City on September 15 to speak about his experience in caring for those who live with chronic pain and why he wrote Needless Suffering
. With support from two local health systems, a local church, and a few individuals, all those who attend this event will receive a free copy of Dr. Nagel’s book. They will also have the opportunity to view the art installation pictured here which is the work of Jacquelyn Sullivan-Gould, Director of Galleries and Professor of Fine Art at Michigan State University. Mrs. Sullivan-Gould was injured in a car accident her freshman year of college and has lived with chronic pain since then.
The life-sized bronze sculpture shown here is a self-image.
A breakfast will be held the following day for physicians who care for those with chronic pain to meet Dr. Nagel and to discuss the National Pain Strategy Report and the recently published CDC Guideline for Opioid Prescribing at the Kauffman Foundation. In addition, PAINS is hosting a luncheon with leaders of local foundations to learn more about local and national efforts to establish that chronic pain is a disease and to improve chronic pain care, including a shift from a biomedical, opioid-based approach to a comprehensive chronic pain care model.
We are also delighted that the Kansas City Library System has agreed to participate in September as Pain Awareness Month. Various branches will have displays that provide educational materials and also a short recommended “reading list,” including:
We are also in conversation with our local Sickle Cell Advocacy Group to talk about how they can get involved and what PAINS can do to support their efforts.
Power of One
On my way in to work this morning, I thought about what I can do personally. (I’m a big believer in “the power of one.”) I decided that throughout September, I will make noise. Periodically, I plan to send emails to my personal contact list with what I call chronic pain “factoids,” e.g.,:·
- Chronic pain is a disease.
- Acute pain that goes untreated over a period of time changes the nervous system and can become chronic pain.
- At least 1:3 Americans live with chronic pain.
- 17% of children between 4-18 experience frequent or severe headaches including migraine.
- It is estimated that approximately 30 million Americans live with “high impact chronic pain.”
- Chronic pain is a leading cause of disability in America.
- Chronic pain costs the U.S. between $565-630 billion annually.
- Chronic pain care does NOT equal opioid therapy.
- Comprehensive pain care improves outcomes, allows people to reclaim their lives, and saves money.
I don’t do Facebook
and I don’t know how to Tweet
, but I bet you do. If so, join me in stirring it up, and let’s get started on planning for Pain Awareness Month in September 2017.
April 28, 2016
INTRODUCTORY NOTE FROM MYRA CHRISTOPHER
Lynn Webster, author of the blog below, is a member of Pain Action Alliance to Implement a National Strategy (PAINS) Steering Committee. He is also one of the most authoritative and committed experts in the United States working on both pain and addition. PAINS has been benefitted tremendously from his involvement in our efforts to “transform the way pain is perceived, judged and treated.”
Over the last couple of years, PAINS has come to understand the importance of embracing the need for dramatic change in the way two diseases – chronic pain and substance abuse disorders, especially opioid addiction -- are addressed, and that by advocates focused on both working together, we are far more likely to improve the health and well-being of all Americans.
Although relationship the between these two public issues is not yet clearly understood, there is without question a correlation between the two. Unfortunately, these two patient populations have often been pitted against one another by the media and fear-mongers for personal or political advantage. PAINS has attempted to reach out to those focused on opioid addiction and to neutralize some of the ill-will between those focused on pain and those focused on addiction.
These efforts are gaining some traction with people of goodwill – no matter their primary locus of concern; PAINS is committed to this work because we are confident that there are shared values and common ground upon which we can collaborate.
We are grateful to Dr. Webster for allowing us to post a blog he wrote shortly after the sudden death of one of America’s great artists, Prince. We believe it makes a compelling case for what PAINS is trying to do.
The Conversation Is About Compassion and Addiction
|Lynn Webster, MD|
I still don’t have all the facts about the circumstances surrounding Prince’s death. I wasn’t Prince’s physician during his lifetime, and I had no opportunity to look at his medical records either before, or after, his death.
All I know about Prince’s death is what you know. Some entertainment media outlets (TMZ, Variety, and more) initially reported that Prince was treated with naloxone, which is the antidote for opioids including heroin, in the days before his death. An autopsy (in which I had no participation) was conducted on Prince’s remains, and according to CNN, it could be weeks before we know why the beloved musical icon is no longer with us.
Several of my colleagues and friends posted a link to my blog on their social networks, and they told me they were surprised to see that some of their supporters had reacted swiftly and furiously. For example, Jan Favero Chambers, President/Founder of the National Fibromyalgia & Chronic Pain Association, was gracious enough to post a link to my blog on her Facebook page.
Among the negative comments she shared with me was this one:
“Jumping the gun a bit. We don’t know the cause of death. Respect his memory, by not posting this.”
If you look at the comments below my original blog, you’ll find someone raised an objection there, too:
“Why are you using Prince to draw people into this article? Do you know his medical history? Have the autopsy results come back? Please school me on your knowledge,” reads the comment.
Empathize, Don’t Blame, People in Pain or With Addiction
As I said in my response to that comment, part of my life’s work is to teach people to empathize with, and not blame, people in pain or with addiction. The untimely death of a beloved musical icon provides an opportunity to test our ability to demonstrate compassion. That is why I blogged about it.
I blogged about the death of Prince not because I jumped to conclusions about how he died. As I wrote then, I didn’t know any more about the cause, or causes, of his death than anyone else who hadn’t treated him or viewed his medical records.
But what I did know is that we, as members of society, had experienced a communal loss. While that’s tragic and sad, it provides us with one benefit: an opportunity to compassionately discuss the difficult topic of addiction and related issues.
Since TMZ, Variety, and other entertainment media had linked Prince’s death with naloxone, which is the antidote for opioids including heroin, I believed (and I still believe) that it was a good time to discuss addiction.
Addiction Is a Disease, Not a Character Flaw
Addiction is a disease, and yet it frequently elicits anger and judgment rather sympathy and support. This is true for everyone, famous or not, with addiction.
I don’t know whether Prince was one of the people with addiction. But what I do know is that, as an addiction specialist, I treated thousands of people with addiction over the years. My professional background qualifies me to make the observation that it’s wrong to deny compassion to the people in various stages of the disease of addiction.
When we blame people with addictions for the choices that led to their addictions, we overlook the fact that addiction is a complex problem. Because there are so many factors involved in addiction, it’s inaccurate and unfair to point a finger at an individual and say, “This disease is your fault.”
It is true that we all own some agency for our decisions, but once the disease of addiction is firmly rooted, the power to choose is stolen by the brain.
My concern was that, if the medical evidence supported the conclusion that Prince died of addiction, the outpouring of devotion that his memory had inspired would turn to rage against him. That, in my opinion, would be a shame, because the people we care about — whether they are family members, friends, colleagues, or celebrities whom we’re unlikely to meet in person — are as worthy of our love in their sickness as they are when they enjoy their full health.
To me, the death of Prince represents an opportunity to begin a discussion about why we negatively judge anyone who is sick. It provides us all with an opportunity to open up our hearts and listen to people in pain and with addiction.
And, most of all, it gives us a chance to feel compassion toward all people, sick or healthy, famous or anonymous, rich or destitute, gifted performer or shy wallflower, and friend or stranger. We’re all members of the same tribe, the human race, and we’re all entitled to love and understanding during every stage of our lives — whether we make good choices or bad choices, and whether we enjoy the happiness of success and health or the difficulties of sickness and even death.
February 15, 2016
|Tarris Rosell, PhD, DMin|
What Kansans Need to Consider about House Bill No. 2150
(“The Kansas Death with Dignity Act”)How would you answer the following question if a Gallup pollster asked?When a person has a disease that cannot be cured and is living in severe pain, do you think doctors should or should not be allowed by law to assist the patient to commit suicide if the patient requests it?
As of mid-2015, nearly 7 out of 10 Americans polled answered that question, “Yes,” including 48% of those who attend church weekly
. The vast majority of Americans
, and 81% of young adults ages 18-34, currently favor physician-assisted suicide (PAS). Are they right? Could that large a majority possibly be mistaken?
Kansas legislators, like those in most states, have had opportunity to consider making PAS legal. It is already legal, with restrictions and regulations, in several other states, most notably Oregon, Montana, Vermont and Washington, and as of this year California. The addition of California now makes the question relevant to 1 in 10 of all Americans. The 1994 Oregon “Death with Dignity Act” served as the model in California, and also for Kansas House Bill No. 2150
, introduced last year. No hearing was held.
Governor Jerry Brown, a Catholic Christian, recently signed that CA legislation after much thought. Kansas Governor Brownback, also a Catholic, seems unlikely to sign such a bill even if it were to get out of committee and garner enough support to get through both chambers of the Kansas legislature. Is this good public policy? Or are we wrong-headed in the Heartland?
One of the influences credited with raising Gallup percentages especially among young people was the physician-aided death of 29-year old Brittany Maynard.
Brittany was living in California when diagnosed with glioblastoma multiforme, an aggressive form of terminal brain cancer. After much research and discussion, Brittany decided to move with her husband and mother to Oregon so as to qualify for that state's "death with dignity" protocol. After establishing residency and meeting with physicians, Brittany received her lethal prescription of drugs, to be used or not at the recipient's will. If taken as a means to end life, Oregon law
specifies that the drugs would need to be taken by Brittany's own hand. No one could do it for her.
Upon experiencing multiple seizures and cancer-related pain, Ms. Maynard decided to take a lethal dose of medications prescribed for this purpose, and thereby end her life on November 1, 2014. Close family and friends accompanied her at the time of departure. It was said to have been a peaceful death. Was it a "death with dignity?"
In a dialogue group I attend monthly, involving mostly physicians and chaplains, the Brittany Maynard case was discussed after viewing a six-minute YouTube video posted by Brittany
prior to her death. I have facilitated discussion of this case with groups of seminarians and medical students, also. Each time, I poll the participants on their opinion of PAS. Regardless of the group, percentages mirror those of Gallup. So should the majority rule in Kansas on this matter?
A hospice physician friend suggested that Brittany Maynard might have utilized palliative care in hospice. He acknowledged that this could not guarantee a death without pain and suffering, but that hospice care places value on a dying patient’s dignity. Indeed, most surely do, and most hospice deaths seem relatively peaceful. This is what I, and most bioethicists I know, advocate rather than expanding access to PAS. It may well be that the American majority has been misled, and that the better way to achieve death with dignity is to promote palliative and hospice care—especially for those groups who don’t have access to comprehensive care. But really, for all of us.Brittany and at least 859 other terminally ill patients in Oregon over the course of the last 15 years or so, have chosen a different route to their deaths
. Even in Oregon this remains a remote event, affecting only about 3 deaths in 1,000. I don’t condemn them nor their assisting physicians. Condemnation gets us nowhere good. I urge thoughtful and respectful ethics dialogue instead.
I advocate for better advance care planning, earlier end-of-life conversations between patients and their physicians, and more robust discussions about goals of care in advance of health crises. Increased public funding seems necessary so as to train more palliative care and hospice physicians. More research, and research funding, is needed for rigorous evaluation of the care currently being provided to dying patients.
This seems to me the better path to death with dignity, not only in the Heartland but everywhere.
How does it seem to you?
RESOURCES:Tarris Rosell, PhD, DMin, is the Rosemary Flanigan Chair at the Center for Practical Bioethics.
December 15, 2015
For more than a decade, the Center for Practical Bioethics has focused significant resources on the under-treatment of chronic pain in the United States. Two of us, Dr. Richard Payne (the John B. Francis Chair) and I had the privilege of serving on the Institute of Medicine’s (IOM) committee that in 2011 published Relieving Pain in America, which reported that 100 million Americans live with chronic pain and approximately a third of them live with “high impact chronic pain,” i.e., pain that is disabling. That same year the Center convened a group of leaders from more than two dozen national organizations for the purpose of advancing the 16 recommendations made in the IOM report. The Pain Action Alliance to Implement a National Strategy (PAINS) emerged from those discussions.
PAINS is focused on driving the “cultural transformation in the way pain is perceived, judged and treated” called for in the IOM report, and over the 4 ½ years that it has existed, we have:
- advocated for a national population health strategy focused on pain,
- encouraged those living with chronic pain and their family members to become engaged and speak out, and
- attempted to provide objective, well-researched information to policy decision makers about chronic pain as a disease.
When the CDC guidelines were published, PAINS quickly reached out to Dr. Deborah Houry, Director of the Injury Prevention Center where they were developed. We indicated that PAINS could be supportive of most of the guideline content but expressed our concern about the process undertaken by the CDC, including what we perceived as lack transparency and input from those living with chronic pain. Rather than pointing out our specific concerns about dosage limits, three-day prescriptions, no mention of abuse-deterrent formulations, co-prescribing naloxone, and understanding regarding those stable and well-managed with opioid therapy, we did two things:
- We expressed our interest in being of help and asked for a meeting, and
- We offered a set of Principles for Evaluating Clinical Guidelines, including Guidelines for Opioid Prescribing.
The following is our statement of principles:
Principles for Evaluating Clinical Guidelines, Including for Opioid Prescribing:
All those in the healing professions are ethically obligated to treat pain to the fullest extent of their capacity and to refer patients to others when their patients’ needs exceed their capacity. This does NOT mean that those in the healing professions are obligated to prescribe opioids to all pain patients.
Complex chronic diseases, e.g., chronic pain, require comprehensive, individualized bio-psychosocial approaches which may or may not include prescription medications, interventions, surgeries, physical therapy, nutrition counseling, complementary therapies, and/or behavioral health.
Treatments that are “meaningful and appropriate” can only be discerned via shared decision making, i.e., by incorporating the patient’s goals and values with clinical knowledge. Therefore, a provider/ patient relationship based on trust and realistic expectations is essential to a positive therapeutic outcome.
In every treatment plan, consideration of adding any medical therapy (pharmacological or otherwise) should always include a risk benefit analysis, and only therapies for which, in the judgment of the physician, potential benefits outweigh risks should be incorporated into a plan of care.
In most instances, treatments with the least potential for harm should precede those with greater risks. Therefore, less invasive procedures should be tried first, and medication dosages should begin small and be titrated under the close supervision of the healthcare provider.
When implementing treatment with known potential risks, the inherent ambiguity of human medicine calls for caution and ongoing monitoring by the healthcare professional who has prescribed or ordered the therapy. When outside entities require screenings and tests, it is essential that financial burdens imposed by those mandates are NOT placed on the provider or the patient.
Although never intended, iatrogenic harm/injuries do occur; in those situations, patients are owed an explanation, apology, assistance in remedying or ameliorating the problem and a new plan of care. Iatrogenic harm does not necessarily imply negligence or maleficence.
# # # # # # # # # #
Last week, six members of the PAINS Steering Committee went to Atlanta to meet with Dr. Houry and her team. The meeting was convivial but frank and straightforward. All those in the meeting agreed that there is significant common ground between those advocating for better pain care and those working to reduce opioid addiction and what the CDC has labeled “unintended deaths” associated with misuse of opioids.
It is PAINS’s view that both addiction and chronic pain are serious illnesses and that both patient populations are deserving of respect, compassion and comprehensive care. Furthermore, we believe that “pitting” these patient groups against one another, for whatever reason, is inherently wrong and that a “harm-reduction approach” is necessary to mitigate both sets of public health problems, i.e., 100 million Americans living with chronic pain and an estimated 16,000 unintended deaths associated with opioid abuse/misuse.
The PAINS team assured leaders at CDC that with broader input into the guidelines, including that of chronic pain patients, and appropriate revisions, PAINS stands ready to assist the CDC in their process. Without that, however, we will not be able to support the guidelines. PAINS is eager to work with CDC on other issues identified as common concerns, e.g., suicidal ideation among those living with chronic pain and the lack of reimbursement for comprehensive care for those who struggle to live with chronic pain and opioid addiction or both. We left Atlanta “cautiously optimistic” that CDC had heard our concerns.
YOUR ATTENTION REQUESTED
CDC will also convene the National Center for Injury Prevention and Control’s Board of Scientific Counselors (BSC), a federal advisory committee, to review the draft guideline. At a public conference call on January 7, 2016, CDC will ask the BSC to appoint a workgroup to review the draft guideline and comments received on the guideline, and present recommendations about the guideline to the BSC.
We encourage all those involved with the Center for Practical Bioethics, whether involved in our PAINS initiative or not, to review the revised guidelines and provide feedback to the CDC.
October 14, 2015
|Elizabeth Berkshire, PhD|
During a patient-centered collaborative on pain treatment, a clinician I’ll call “Lear,” blurted out that the patient is the problem. He later apologized, but the burden brought by the patient had been exposed. As part of his apology, Lear said that “they” (patients) needed to get out of their own way. I’m not customarily one for reliance on the notion of a Freudian slip, but this struck me as the kind of truth not easily introduced into speech. It is easy to suffer greatly in the company of a patient in refractory pain, and especially one who lacks the sort of organ-based evidence that can be relied upon to maintain interpersonal (or professional) boundaries.
Contriving Social Boundaries
Why not welcome unbounded (or collective) suffering? In short, for blogs are meant to be brief, we must contrive social boundaries to stave off the dread that comes from realizing that we actually exist among bodies—not in them. So we’ve adapted ways of thinking about our being. For example, we can exist in a faulty body. We can also exist in a faulty brain. Take your pick. As Judy Foreman reports in A Nation in Pain (2015), doctors are trained to refer patients on to a “shrink” when the medical model offers no progress (p. 5). Foreman also shares an anecdote from a University of Washington informal survey of graduating medical students who, when asked what would they do when faced with a real pain patient, netted the response: “Run!” (p.9)
As for the patient, it is easy to suffer alienation in the company of anyone especially trained to keep important parts of you (and themselves) out of the way. We don’t customarily talk about the ways we contrive relations among bodies to keep from spilling the beans about our existence. How could we? We’ve effectively made such talk taboo. Run! How convenient for us all. I say this with compassion.
Beyond Patient Centering
Speaking of convenience, it occurs to me that patient centering (or the pretense that entitlements can be shifted in a long-standing system of institutionally sanctioned power differentials) is counterintuitive to the development of healing communities. It should worry us that the very notion of patient centering, while perhaps born out of advocacy within and outside of institutional systems of care, is not practical. Nor does it substantively alter the status quo. For example, Lear and a select group of his “collaborative” colleagues spoke from behind a podium. Revolutionary dialogue (including the listening part) is easily disregarded if a podium stands only to position folks into roles.
What to do? We could better lament what the patient and clinician are mutually up against. We’d have to move that pesky podium first. Then we could simultaneously embrace Lear and his insufferable patients. We need not condone professional nearsightedness as we do this. Instead, we might recognize the existential crisis in Lear’s own desperate appeal for care from the patient (please get out of your own way). In fact, Lear’s request bears all the more truth when tethered to a patient who tearfully shared with me that he had failed, time and again, to convey (so as to better heal) his chronic pain. We must stitch them both back into the fabric of life. We must tell them that their alienation from one another is not a mental defect. It is a practical disaster. It is a relational mishap. It is all too familiar. I know this, in part, because I wanted to bolt just seconds after meeting this patient. I had to reach my hands up to his face to stay put. Why? Because I knew exactly what he meant. In that moment we were together (bound) and exposed in ways we have evolved not to trust. We don’t prepare physicians to manage this in the clinic. We also no longer prepare psychologists for this (but that is another blog, for another day).
To Be Another
It is not easy to dismantle the interconnecting and yet disparately empowered statuses (or contrivances) built into how we learn to talk to one another so that we might stay safely tucked in a body. This is why Shakespeare’s Lear implored his daughter Cordelia to “speak again.” He needed her to flatter him back into a titled position (and the safe distance it obliged from all). It is important to know that these rules of speech, and the social taxonomies they maintain, help to keep us all pinched off from the burden of knowing what it is like to be another. In another world, collective suffering might not have been such a burden for a physician, who cannot help but to find herself in terribly close proximity to human frailty. In another world, insufferable pain might not have been such a hazard for a patient to carry. But another world is not what we have.Elizabeth Berkshire, PhD, is adjunct assistant professor of bioethics at Kansas City University of Medicine and Biosciences.
February 7, 2015
Chronic Pain -- The Invisible Public Health Crises
A Call for Moral Leadership“I am an invisible man. No I am not a spook like those who haunted Edgar Allen Poe: Nor am I one of your Hollywood movie ectoplasms. I am a man of substance, of flesh and bone, fiber and liquids- and I might even be said to possess a mind. I am invisible, simply because people refuse to see me.”
- Ralph Ellison
Ralph Ellison’s famous novel, The Invisible Man
, starts with this passage, which also reminds me of the problem of chronic pain. The Institute of Medicine (IOM) report, Relieving Pain in America, documented the more than 100 million Americans (almost 1 in 3 and surely someone whom you know and love) suffers from chronic pain, at an economic cost of $6 billion and an incalculable psychological cost. We named pain as a “disease” because of its profound effects on the brain and its interference with multiple domains of the quality of life of sufferers. The committee identified chronic pain as a public health problem, given the sheer numbers affected, and the opportunities to intervene to prevent acute pain from becoming chronic pain. However, the report is now almost four years old, and it is fair to say has not really moved the needle in doing what we implored in the IOM report—“changing the way in which pain is judged, managed and perceived.” Why is that?
Because pain is subjective -- and therefore difficult to measure by the usual medical tests -- it is often doubted. As someone once said, my pain is real, your pain is in doubt. Also, we live in profound cultural ambivalence about pain. Cultural icons such as Julius Caesar and Albert Schweitzer have been quoted as saying that pain is worse than death, but there is also an ethos of “no pain, no gain.” Medical interventions, particularly powerful opioid drugs such as morphine and oxycodone, although essential to manage acute and persistent pain, come with a cost of many side effects and may induce psychological dependence in some. Persons in pain and their doctors fear addiction, although we do not truly know the risk of addiction in persons taking opioids who have not abused recreational or illicit drugs. For these and other reasons, on an individual and societal level, we prefer to ignore the problem of chronic pain
, unless confronted by it in our personal lives.
So how do we advance the moral imperative to address pain and suffering in contemporary medical practice, as required by our ethical codes and professional oaths? How do we bring the invisible suffering of so many to light and work to alleviate it? I think we commit ourselves to five big goals:
1. We advocate for more and better science to understand the underlying neuroscience of pain production and modulation. This requires advocacy at the NIH and other federal agencies to fund worthy science related to pain mechanisms and clinical trials of pain treatments.
2. We advocate for more and better drug development, including the creation of abuse deterrent opioid formulations and novel non-opioid based analgesics. This will require advocacy for effective public-private partnerships between the pharmaceutical industry, academia and federal agencies.
3. We advocate and demand better education of health care professionals to live up to their obligations to be competent and to attend to pain and suffering in their patients. We also advocate for better public education so that persons suffering with chronic pain understand that this is a disease, and not subject to quick fixes.
4. We advocate and demand better policy solutions to provide sustainable and patient-centric interdisciplinary pain treatment programs that truly address patient and provider needs.
5. Finally, we need effective collaboration on a shared policy agenda between pain specialists and substance abuse specialists to advocate for comprehensive, rehabilitation-focused care for chronic pain
, and greater access to substance abuse treatment for those persons who have a dual diagnosis of chronic pain and addiction.
These are my thoughts. What do you think?Richard Payne, MDJohn B. Francis Chair, Bioethics
Center for Practical Bioethics
Esther Colliflower Professor of Medicine and Divinty
May 14, 2012
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