What Is End-of-Life Care?

By Dr. Forest Tennant and Kristen Ogden

The Medical Board of California’s new Guidelines for Prescribing Controlled Substances for Pain are futuristic and practical.  They recognize that persons who need intractable pain or “end-of-life” care may often require a non-standard medical program, so the board made these two conditions exempt from any limitations on dosage or treatment.

In our recent column on the guidelines, we clarified the meaning of intractable pain and suggested criteria for identification of the intractable pain patient who requires non-standard drugs and dosages. This column does the same for “end-of-life” care. 

The California guidelines define end-of-life care as “for persons with a terminal illness or at risk of dying in the near future whether in hospice care, hospitals, long-term care or at home.”  Note that this definition does not include palliative care, whose definition is frankly now in limbo, because medical textbooks define it as “symptomatic rather than curative care.” Third party payers only recognize palliative care as being in the last few months of life.

How does one identify a person who needs “end-of-life” care?  California actually has a law which helps identify the person who needs end-of-life care.  Such a person “is suffering from an incurable and irreversible illness that will bring about death within one year if the illness takes its normal course and the treatment is for pain control and/or symptom management rather than to cure the illness.” 

In effect, this definition includes intractable pain patients who are not expected to live more than a year without treatment.  Severe intractable pain, regardless of cause, if left untreated will result in malnutrition, immune deficiency, cardiac or adrenal failure, and a shorter life. 

To our knowledge there are no formal criteria published for clinicians to determine when there exists high risk of death within a year.  Here are criteria used and suggested by us: 

1. Patient has a known disease that may shorten life, such as cancer, adhesive arachnoiditis, head trauma, and Ehlers-Danlos syndromes.

2. Pain is constant and interferes with activities of daily living as reported by a close family member.  Examples are inability to eat, toileting, mobility, hygiene, and dressing.

3. Bed bound and immobile for many hours of each day.

4. Malnutrition, evidence of tissue loss, poor skin turgor (rigidity), and/or weight loss.

5. Family reports inability to normally read, answer questions, or socially respond.

6. Some alterations in normal physiologic functions such as blood pressure, pulse, and hormone levels.

We encourage clinicians to use our criteria for “end-of-life” care or develop some specific alternative criteria.  Too many seriously ill intractable pain patients have been denied care until it was too late.  An “end-of-life” case may begin at any age, be it 14, 40 or 80 years old. 

Many, if not most “end-of-life” patients meet terminus within a year. But some persons turn things around with adequate intractable pain care and live much longer.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain. The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Kristen Ogden is a patient advocate from Virginia. Kristen and her husband Louis travel regularly to California for his intractable pain treatment and prescriptions, which are not available in their home state.

U.S. Ranked Poorly in End-of-Life Care

By Pat Anson, PNN Editor

The U.S. healthcare system barely gets a passing grade in caring for dying patients, ranking well behind most developed countries and even some third world nations, according to a new analysis of end-of-life care around the world.

The United Kingdom earned the highest ranking in the study, followed by Ireland, Taiwan, Australia, South Korea and Costa Rica, which all earned A grades. The U.S. earned a C grade, ranking 43rd of the 81 countries evaluated. Nigeria, Guatemala, Botswana, Romania, Mongolia and several other low-income countries had higher grades than the U.S.  

“Many individuals in both the developed and developing world die very badly – not at their place of choice, without dignity, or compassion, with a limited understanding about their illness, after spending down much of their savings, and often with regret about their course of treatment. These things are very common,” lead author Eric Finkelstein, PhD, a palliative care expert and professor at Duke University’s Global Health Institute, said in a news release.

Top 10 Countries on Quality of Death Index

SOURCE: LIEN FOUNDATION

The study findings, recently published in the Journal of Pain and Symptom Management, are based on a survey of 181 palliative care experts around the world who were asked how well their own countries provided for the physical and emotional wellbeing of dying patients.

Over a dozen health factors were evaluated, including pain management, being treated kindly, affordability, spiritual and emotional needs, and providing patients with a clean and safe space. Treatments that address quality of life, rather than just extending life, were also an important consideration.          

“Perhaps the main conclusion from this important exercise is that most people in the world die badly -- many through no treatment at all and many through excessive often futile treatment that increases suffering,” says Richard Smith, a palliative care expert and former editor of the British Medical Journal.

It’s no surprise that most developed countries with well-funded healthcare systems rated highly in end-of-life care, while poorer countries fared worse.

“The overwhelming need for palliative care is in low and middle-income countries, where less than a third of services exist,” said co-author Stephen Connor, executive director of the Worldwide Hospice Palliative Care Alliance.

The obvious exception to that is the United States’ lackluster rating. Researchers say that’s because healthcare decisions in the U.S. are often based on last-ditch efforts to extend life, rather than ensuring comfort and quality of life in a patient’s final days.  

“We spend so much money trying to get people to live longer, but we don’t spend enough money in helping people die better,” says Finkelstein, who is also the director of the Lien Centre for Palliative Care at Duke-NUS.

The study was funded by the Lien Foundation, a Singapore-based nonprofit focused on improving quality of life. Previous surveys of palliative care experts by the foundation ranked the U.S. 9th on the “Quality of Death” index in 2010 and in 2015.

Finkelstein says the covid pandemic has opened a window into end-of-life care, with millions of patients spending their dying moments alone, often separated from their families and without emotional support.

“Generally, people don’t talk about death. COVID has made it less taboo. We have an opportunity to continue this discussion and not just help COVID patients, but to help everyone have a better end-of-life experience,” he said.

Finkelstein hopes the study will spur action from policymakers to improve conditions for dying patients, such as loosening restrictions on pain medication. A recent study in Oregon found that overzealous enforcement of opioid guidelines led to a significant decrease in opioid prescribing to patients being admitted to hospice, resulting in some terminally ill patients suffering needlessly.

Finkelstein urges people to ensure a better end-of-life experience for themselves and their loved ones by making an end-of-life plan and discussing it with family and friends.

“Do an advanced care plan or at least express your wishes to friends and family,” Finkelstein says. “Don’t wait. By the time you fall ill, it may be too late and folks may not know what you want.”

Steep Cuts in Opioid Prescribing ‘Raises More Questions’

By Pat Anson, PNN Editor

Several studies in recent years have documented how opioid prescribing has declined significantly in the United States, with per capita consumption of opioid medication recently falling to its lowest level in two decades.

For the first time, a new study by the RAND Corporation breaks the decline down by medical specialty, showing that some doctors may have gone too far in their effort to reduce opioid prescribing and lower the risk of abuse and addiction.

“Oftentimes when I do studies, I think we have a clear answer. This one in my mind raises more questions,” says Bradley Stein, MD, a senior physician researcher at RAND and lead author of the study published in the Annals of Internal Medicine.

Stein and his colleagues looked at opioid prescriptions filled at U.S. pharmacies in 2008-2009 and compared it to prescriptions filled in 2017-2018. Over that period, per capita morphine milligram equivalent (MME) doses for opioids fell by over 21% nationwide.

What surprised researchers is that many doctors treating patients with cancer pain, acute trauma pain or surgery pain significantly reduced their opioid prescribing even though most federal and state guidelines didn’t call for it.

The influential and much criticized 2016 CDC opioid guideline, for example, only applies to primary care physicians who treat chronic non-cancer pain. Yet emergency physicians, psychiatrists and oncologists cut their opioid prescribing significantly more than primary care providers and pain specialists.

MME Decline By Medical Specialty (2008 to 2018)

• -70% Emergency Physicians

• -67% Psychiatrists   

• -60% Oncologists  

• -49% Surgeons 

• -41% Dentists    

• -40% Primary Care Providers

• -15% Pain Specialists     

Stein attributes the steep decline in opioid prescribing not just to the CDC guideline, but to state regulations and insurance company policies. While some of the decline was appropriate, he thinks it may have gone too far.   

“There are probably populations where a decade ago, someone may have given 30 days of opioids, where maybe 3 days or 7 days would be fine. Or maybe they didn’t need to prescribe it at all,” Stein told PNN. “But there are other populations for whom several days of opioids may very well be appropriate. And those are individuals that probably we should not be seeing substantial decreases in. An example is individuals with late-stage cancer.”

The CDC guideline specifically says it is “not intended for patients undergoing active cancer treatment, palliative care, or end-of-life care.” But in practice, many of those patients are being forced to follow the CDC’s recommended dose limits. Some get no opioids for pain relief. A recent study in Oregon found a significant decline in opioids being prescribed to terminally ill patients being admitted to hospice care.

“The blunt policy approach that called for reduced opioid prescribing across-the-board clearly affected some medical specialties more than others. But even patients receiving palliative care have felt the negative impact of opioid policies that have lacked nuance and depth,” says Dr. Chad Kollas, a palliative care specialist in Florida who has called federal opioid policy an “abject failure” because it has not reduced overdose deaths. 

“Patients with cancer and sickle cell disease who are fortunate enough to have a palliative care physician still face challenges filling prescriptions for controlled pain medications at many pharmacies.” 

PNN readers may be familiar with the story of April Doyle, a terminal breast cancer patient who posted a tearful video online after she was denied opioids at a Rite Aid pharmacy in 2019. Doyle went to another pharmacy and her prescription was filled, but only after a lot of unnecessary physical and emotional pain. She died the following year. 

Geographic Variability

Another surprise uncovered by RAND, a nonprofit research organization, is the extreme variability of opioid prescribing from state to state and county to county.

The map below shows a checkerboard pattern across the United States, with counties in blue showing a 50% or more decline in opioid prescribing, and counties in red showing a 50% or more increase from 2008 to 2018.

Change in County Per Capita MME (2008-2018)

RAND CORPORATION

Per capita opioid prescriptions declined the most in large metropolitan counties (-22.6%) and in counties with higher rates of fatal opioid overdoses (-34.6%).

But even in states that were hit hard by the opioid crisis, such as West Virginia, Ohio and Kentucky, there are blue counties where prescribing fell significantly right next to red counties where opioid prescriptions spiked. Kansas and Missouri have more red counties than blue.  

“It was eye-opening to see the variation across states and counties,” said Stein. “We’re seeing variation by payer. We’re seeing variation by community. We’re seeing variation by type of prescriber. And I think this is a reminder to us all that this is probably an issue where one-size-does-not-fit all.  

“And I think coming to a better understanding of that will help us make sure that while we’re appropriately decreasing the amount of opiates being prescribed for people whose pain we can manage effectively in different ways, the decrease has been greater than it needs to be for some populations. We need to make sure that people who need adequate pain management get it.”

The RAND study was funded by grants from the National Institutes of Health.

Are You in Palliative or Curative Care?

By Dr. Forest Tennant, PNN Columnist

If you are in medical treatment for a chronic disease, you are either in curative or palliative care. Every patient with intractable pain syndrome (IPS), their family and physicians need to be very clear as to which category they are in.

A major reason that IPS patients can’t get the help they need is because they have not made the determination and been declared to be in palliative care. If you are not in palliative care, you may be restricted from obtaining certain drugs, dosages and financial benefits you need for your well-being. 

What is Curative Care?

Curative care is treatment that is focused on resolving a specific disease or disorder that is causing symptoms such as pain, fatigue, depression or physical impairments. Treatment can be directed either at total or partial cure of the disease or disorder.

What is Palliative Care?

Palliative care is symptomatic treatment to provide relief and quality of life to someone with an incurable condition. Palliative care will also hopefully prevent an incurable disease or disorder from worsening and causing further complications.

There are two reference books published for physicians so they can quickly look up the latest on diagnosis and treatment.  Their definitions of palliative care are given here to help all parties know which care -- palliative or curative --- best fits any given patient.

“Palliative care is medical care focused on improving quality of life for people living with serious illness. Serious illness is defined as a condition that carries a high risk of mortality, negatively impacts quality of life and daily function and/or is burdensome in symptoms, treatments and caregiver stress.” -- Current Medical Diagnosis and Treatment

“Palliative care is treatment that is focused on pain and symptom management as well as quality of life for patients and their families. It can be rendered at any point in the course of treatment of illness, whether that illness is life threatening or not.” – Current Therapy

The World Health Organization defines palliative care as “prevention and relief of suffering in adults or pediatric patients and their families facing the problems associated with life-threatening illness.”

Misconceptions About Palliative Care

There are many misconceptions about what qualifies a patient to be palliative care. Here are just some of the common misconceptions and fallacies:

• Must be at “end-of-life.” No! An incurable disease may occur at any age.

• Must be in a hospice. No!

• Must be on Medicare. No!

• Must be in a nursing home, assisted living or hospital. No!

• Must have cancer. No! Palliative care applies to any incurable disease.

• Must enroll in a program called “palliative” or with a “palliative care organization.” No!

• Must go to a doctor who specializes in palliative care. No!

• Palliative care requires the patient to have a permit or certificate. No!

Even though there are some physicians and programs that specialize in palliative care, any MD or DO can declare a patient to be “palliative” and provide the necessary medication for relief of pain and other symptoms.

You may have to be declared to be in “palliative care” and have it stated in your medical record, so that you can obtain the medications and dosages to adequately relieve your pain. Federal guidelines specifically exempt palliative care patients from a recommendation that daily opioid doses not exceed 90 milligrams morphine equivalence (MME). If you have not been declared to be in palliative care and it isn’t in your medical record, your opioid dosage may be reduced. 

Presenting Your Case for Palliative Care

In order to obtain proper care and necessary medications in today’s healthcare system, you will likely need to be declared “palliative” by one of your personal physicians. This declaration will need to be recorded in your medical record and all concerned parties informed of it. Your pharmacy, insurer, laboratory and other healthcare providers should all be told that you are in palliative care.  

Most IPS patients need palliative care and meet the necessary requirements to be declared as palliative. One of your doctors needs to simply write into your medical record the name of your incurable disease, and that your treatment will focus on symptom management, comfort and quality of life. There is no requirement to state how long you may live.

The only required documentation is a written chart note in your medical record by a licensed physician in your state. They will need to state the specific name of your incurable disease and that you are in palliative care.

Every IPS patient and family needs to determine whether their treatment needs to be palliative or curative.  While everyone would like a cure, this may not be practical or possible.  What evidence or experience tells you that you can achieve a cure?  It may be depressing to recognize that a complete cure is not possible, but you must face reality.

Keep in mind that an incurable disease and pain doesn’t have to keep you from having a meaningful, productive and good quality of life. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here. The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

Hospice Patients Getting Fewer Opioids for Pain Relief

By Pat Anson, PNN Editor

Overzealous enforcement of opioid guidelines has led to a significant decrease in opioid prescribing to terminally ill patients being admitted to hospice care, according to a new study that found some dying patients may have had their pain undertreated.

The study, led by researchers at the Oregon State University College of Pharmacy, looked at prescription records for over 2,600 patients discharged from hospitals to hospice care from 2010 to 2018. Nearly 60% of the patients had a cancer diagnosis.  

In 2010, researchers say about 91% of the patients were receiving opioids for pain at discharge to hospice. But by 2018, only 79% were getting opioid medication.

The goal in hospice care is to minimize the suffering of dying patients and to maximize their comfort and quality of life. Patients in hospice or palliative care are generally exempt from federal and state opioid prescribing guidelines.

"Indiscriminate adoption or misapplication of these initiatives may be having unintended consequences," said lead author Jon Furuno, PhD, an associate professor and interim chair of the Oregon State Department of Pharmacy Practice. "The CDC Prescribing Guideline and the other initiatives weren't meant to negatively affect patients at the end of their lives, but few studies have really looked at whether that's happening. Our results quantify a decrease in opioids among patients who are often in pain and for whom the main goal is comfort and quality of life."

The CDC’s opioid guideline specifically says it is “not intended for patients undergoing active cancer treatment, palliative care, or end-of-life care.” But in practice, many of those patients are being forced to follow the CDC’s recommended daily dose limit of 90 morphine milligram equivalent (MME). Some get even less.  

“I'm a cancer patient on palliative care and being forced tapered off to 20 mg when I was on 100 mg for 20 years and working, taking care of my family and myself. Now I'm in bed all day in severe pain,” said one patient who responded to PNN’s recent survey on the CDC guideline.

“My daughter is in palliative care and been on 330 MME daily for 8 years. Now her palliative care doctor wants to force taper her to 50 MME a day because he says the state is changing rules,” a mother told us. “She’s terrified of being forced to taper. I’m going to lose my daughter because she can’t be in intractable severe pain. It’s inhumane and cruel to do to a patient who is never going to get better and has a degenerative condition.” 

“I have stage IV metastatic lung cancer, it is terminal.  I have gone months without pain medication after being jerked off medication completely. I have struggled to find a doctor to treat my pain,” another patient told us. “I am in total shock that cancer patients have to suffer like this. These guidelines have terrified doctors. If they’re too scared to treat cancer pain, what pain will they treat?”

According to Furuno, more than 60% of terminally ill cancer patients have "very distressing pain.” He and his colleagues found that while opioid prescribing declined for patients heading into hospice, there was more prescribing of less potent, non-opioid analgesics.

"Sometimes non-opioids alone are the best choice, or non-opioids in combination with opioids," Furuno said. "But it's important to remember that non-opioids alone are also not without risk and that delaying the start of opioid therapy may be delaying relief from pain.”

The study findings were published in the Journal of Pain and Symptom Management.

Can ‘Magic Mushrooms’ Help Dying Patients?

By JoNel Aleccia, Kaiser Health News

Back in March, just as anxiety over COVID-19 began spreading across the U.S., Erinn Baldeschwiler of La Conner, Washington, found herself facing her own private dread.

Just 48 and the mother of two teenagers, Baldeschwiler was diagnosed with stage 4 metastatic breast cancer after discovering a small lump on her chest, no bigger than a pea.

Within weeks, it was the size of a golf ball, angry and red. Doctors gave her two years to live.

“It’s heartbreaking,” she said. “Frankly, I was terrified.”

But instead of retreating into her illness, Baldeschwiler is pouring energy into a new effort to help dying patients gain legal access to psilocybin — the mind-altering compound found in so-called magic mushrooms — to ease their physical and psychic pain.

“I have personally struggled with depression, anxiety, anger,” Baldeschwiler said. “This therapy is designed to really dive in and release these negative fears and shadows.”

Erinn Baldeschwiler

Dr. Sunil Aggarwal, a Seattle palliative care physician, and Kathryn Tucker, a lawyer who advocates on behalf of terminally ill patients and chairs a psychedelic practice group at Emerge Law Group, are championing a novel strategy that would make psilocybin available using state and federal “right-to-try” laws that allow terminally ill patients access to investigational drugs.

They contend that psilocybin — whether found in psychedelic mushrooms or synthetic copies — meets the criteria for use laid out by more than 40 states and the 2017 Right to Try Act approved by the Trump administration.

“Can you look at the statute and see by its terms that it applies to psilocybin?” Tucker said. “I think the answer is yes.”

Currently, psilocybin use is illegal under federal law, classified as a Schedule 1 drug under the U.S. Controlled Substances Act, which applies to chemicals and substances with no accepted medical use and a high potential for abuse, such as heroin and LSD.

Recently, however, several U.S. cities and states have voted to decriminalize possession of small amounts of psilocybin. This month, Oregon became the first state to legalize psilocybin for regulated use in treating intractable mental health problems. The first patients will have access beginning in January 2023.

It’s part of a wider movement to rekindle acceptance of psilocybin, which was among psychedelic drugs vilified — and ultimately banned — after the legendary counterculture excesses of the 1960s and 1970s.

“I think a lot of those demons, those fears, have been metabolized in the 50 years since then,” Aggarwal said. “Not completely, but we’ve moved it along so that it’s safe to try again.”

He points to a growing body of evidence that finds that psilocybin can have significant and lasting effects on psychological distress. The Johns Hopkins Center for Psychedelic and Consciousness Research, launched this year, has published dozens of peer-reviewed studies confirming that psilocybin helped patients grappling with major depressive disorder and suicidal thoughts.

Researchers are also looking at psilocybin as a treatment for post-traumatic stress disorder (PTSD), Lyme disease syndrome, cluster headaches and migraines. A small placebo-controlled study by Yale researchers found that migraine sufferers experienced a significant decrease in weekly migraine days after only one dose of psilocybin. 

“Psilocybin was well-tolerated; there were no unexpected or serious adverse events or withdrawals due to adverse events. This exploratory study suggests there is an enduring therapeutic effect in migraine headache after a single administration of psilocybin,” researchers found. 

Psilocybin Shifts Perception

Psilocybin therapy appears to work by chemically altering brain function in a way that temporarily affects a person’s ego, or sense of self. In essence, it plays on the out-of-body experiences made famous in portrayals of America’s psychedelic ’60s.

“What psychedelics do is foster a frame shift from feeling helpless and hopeless and that life is not worth living to seeing that we are connected to other people and we are connected to a universe that has inherent connection,” said Dr. Ira Byock, a palliative care specialist and medical officer for the Institute for Human Caring at Providence St. Joseph Health.

“Along with that shift in perspective, there is very commonly a notable dissolution of the fear of dying, of nonexistence and of loss, and that’s just remarkable.”

The key is to offer the drugs under controlled conditions, in a quiet room supervised by a trained guide, Byock said. “It turned out they are exceedingly safe when used in a carefully screened, carefully guided situation with trained therapists,” he said. “Almost the opposite is true when used in an unprepared, unscreened population.”

The FDA has granted “breakthrough therapy” status to psilocybin for use in U.S. clinical trials conducted by Compass Pathways, a psychedelic research group in Britain, and by the Usona Institute, a nonprofit medical research group in Wisconsin. More than three dozen trials are recruiting participants or completed, federal records show.

But access to the drug remains a hurdle. Though psychedelic mushrooms grow wild in the Pacific Northwest and underground sources of the drug are available, finding a legal supply is nearly impossible.

End of Life Washington, a group focused on helping terminally ill patients use the state’s Death With Dignity Act, recently published a policy that supports psilocybin therapy as a form of palliative care. Other treatments for anxiety and depression, such as medication and counseling, may simply not be practical or effective at that point, said Judith Gordon, a psychologist and member of the group’s board of directors.

“When people are dying, they don’t have the time or the energy to do a lot of psychotherapy,” she said.

Baldeschwiler agrees. With perhaps less than two years to live, she wants access to any tool that can ease her pain. Immunotherapy has helped with the physical symptoms, dramatically shrinking the size of the tumor on her chest. Harder to treat has been the gnawing anxiety that she won’t see her 16-year-old daughter, Shea McGinnis, and 13-year-old son, Gibson McGinnis, become adults.

“They are beautiful children, good spirits,” she said. “To know I might not be around for them sucks. It’s really hard.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

New Think Tank Seeks to Reduce Pain and Improve Lives

By Stephen Ziegler, PhD, Guest Columnist

Millions of men, women and children in the United States and around the world are dying of cancer, and some die in severe pain because they have limited or no access to essential palliative medicines. Much of that suffering is avoidable.

Opioids and other palliative medicines are powerful drugs that are deemed essential by the World Health Organization. They provide comfort and relieve suffering at the end of life and for those who face serious medical conditions. Unfortunately, these very same drugs also have the potential for abuse, misuse, overdose and exploitation by the illicit market.

According to the 2017 Lancet Commission Report, governments around the world adopted “overly restrictive legislation” that focused more on preventing abuse than ensuring safe access to essential medicines. The problem is not limited to developing countries. Well-intentioned government policies to reduce opioid prescriptions across the United States have resulted in unintended harms for those who are recovering from painful surgeries or who were functioning well on opioid therapy.

Unfortunately, governments rarely investigate whether the drug control policies they create actually work and whether their policies are effective in preventing abuse while providing access to the drugs for those who need them.

But with your help we can change that.

I am proud to announce the creation of the Center for Effective Regulatory Policy and Safe Access (CERPSA), a new nonprofit think and do tank sponsored by the Colorado Nonprofit Development Center.  

CERPSA is a non-partisan, science-based research organization that focuses on the reduction of human pain and suffering by improving the regulation of - and safe access to - palliative medicines and treatments.  

Our mission is to eliminate unnecessary physical pain and suffering, and to help governments and communities create and maintain effective drug control policies that improve people's lives. We believe that there are good public health reasons for controlling drugs, whether in the form of prescription opioids, antibiotics, or even medical cannabis. We do not seek the elimination of regulation, only its dramatic improvement so that drug control policies can ensure access while at the same time prevent abuse.  

CERPSA represents a bold new effort to help reduce pain and improve people’s lives through research, education and outreach. Now more than ever, we need science-based initiatives that can fundamentally help change the way drugs are controlled.  

You can become part of the movement. Please join us by visiting our website and donating to CERPSA and help us reduce human pain and suffering in the nation and around the world. 

Dr. Ziegler has been trained as both a social scientist and attorney, has been involved in pain treatment and drug policy for almost two decades, and was both a Mayday Pain Scholar and Fellow.

The New Norm for Chronic Pain Patients

By Rochelle Odell, PNN Columnist 

Come the new year, I will start my 28th year battling Complex Regional Pain Syndrome (CRPS). Like so many high impact pain patients, I have been experiencing a pain flare that isn't improving and prevents me from doing many tasks. I am praying it will get better and not become my new norm.  

I have been a palliative care patient for a couple of months now. Palliative care is not what many people think it is. My meds did not get increased and I still live at home. A home health RN visits me twice a week, takes my vital signs, asks how I am doing, how is my pain, and what doctor do I see next.  

I was evaluated this time last year for Transitional Care Management or TCM. It’s usually for patients getting out of the hospital and is short term -- only two to three months at the most. A medical doctor evaluated me and told me I was “high functioning” but needed assistance. High functioning? I have no help and only have me to depend on. I have to function to some degree just to survive. 

My RN tells me palliative care is meant to help patients be as comfortable as possible. They used to be able to give their patients pain meds, but now all they can give is Toradol, a non-steroidal anti-inflammatory drug, which does me no good because I am deathly allergic to NSAID's and aspirin. She is compassionate and caring and says what is happening to me and others in pain is "Just not right." I have to agree with her. 

Perhaps part of this new norm is reading so much negativity coming from our not so illustrious leaders in DC, along with blurbs from the CDC and the FDA. To me it appears to be getting worse as opposed to getting better.  

Is my increased pain clouding what I am reading? I don't believe so. Many of us suffering from high impact pain -- about 20 million Americans – are unable to get opioid medication. Even those suffering from life ending cancer are being turned away. That is nothing but plain cruelty. 

There is a core group of pain patients, probably numbering a few thousand, that is trying to change things. We call and write our elected officials and various government offices that have deemed it their duty to destroy our lives piece by piece.

Those that are physically able can attend a Don't Punish Pain Rally. There is another DPP rally coming up October 16. I have only been able to attend one rally. It's hard when one is in extreme pain and with limited funds to be able to travel to the rallies.  

Why Are We Being Treated This Way?

What is happening to us? Why are our physicians, those trained to treat and care for us, turning their backs on us? Why are we being shunned? Why are we being treated like we did something wrong?  

Why are people who abuse drugs being treated with compassion and care but not us? They hurt their families, they steal, they destroy their bodies, they seemingly don't care. We don't do any of that. Our pain is caused by diseases we never asked for. We care, we want to live and we want to participate in life.   

They get clean needles, clean rooms to shoot up in, free Narcan, and in Canada they are giving Dilaudid (hydromorphone) to those who abuse drugs. Dilaudid is an opioid used for treating severe pain. I was on Dilaudid three years ago. Not anymore.  

I just read about a county in England that is going to provide medical grade heroin twice a day to drug addicts. Why? The police are hoping it will lower crime in the area. I bet they have lines form they never expected.  

So now those who abuse are getting free heroin. Yet pain patients are kicked to the curb. How can physicians care for one who abuses their body but refuse to treat a human being suffering from intractable pain? I don't mean to sound so cold when it comes to those who abuse, but people in pain are suffering unrelenting pain because of them.   

If we ask for meds, ask for referrals or refuse a treatment we know will have adverse effects, we are accused of being non-compliant and dropped by our doctors. I believe the loss of compassion from our physicians is why many of us are having these unexplained pain flares that are becoming our new norm.  

I have been reading on social media that patients on opioids who move or are dropped are finding it impossible to get a new primary care physician. I saw my PCP last week and asked her about it. She emphatically told me "they" would not accept new patients who are on or had been on opioids. I was afraid to ask who “they” were, but am assuming it's all or most of the doctors in this area. 

I am sorry for all my friends in pain and for those I don't know who are in pain. I am sorry we are being treated like addicts. That those in healthcare would turn a blind eye to us. My heart breaks for those who feel the only solution is to take their life to end the pain. That is so wrong. Human beings are being pushed to that point by those elected to represent us and those in healthcare who are supposed to care but don't. I am so very sorry. 

Rochelle Odell lives in California.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

This column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

WHO Criticized for Withdrawing Opioid Guidelines

By Pat Anson, PNN Editor

A coalition of international palliative care organizations is protesting a decision by the World Health Organization (WHO) to withdraw two guidelines for treating pain with opioid pain medication.

“We are extremely concerned that the withdrawal of these guidance documents will lead to confusion and possible extreme measures that will hinder access to patients with legitimate medical needs,” the coalition said in a joint statement released this week.

The guidelines were withdrawn after two U.S. congressmen released a report that accused WHO of being “corruptly influenced” by Purdue Pharma and other opioid manufactures when it developed the guidelines in 2011 and 2012. The guidelines for treating pain in adults and children state that opioids “are known to be safe and there is no need to fear accidental death or dependence.”

Reps. Katherine Clark (D-MA) and Hal Rogers (R-KY) said the WHO guidelines served as “marketing materials” for Purdue, the maker of OxyContin.

“We are highly troubled that, after igniting the opioid epidemic that cost the United States 50,000 lives in 2017 alone… Purdue is deliberately using the same playbook on an international scale,” the report said. “If the recommendations in these WHO guidelines are followed, there is significant risk of sparking a worldwide public health crisis.”

WHO withdrew the guidelines a month after the report was released, citing “new scientific evidence” that emerged since their publication.

WHO’s decision to withdraw the guidelines gave credibility to a congressional report based largely on innuendo, according to the statement released by over a hundred palliative care organizations, including the American Academy of Hospice and Palliative Medicine and the UK-based International Observatory on End of Life Care.

“The report contains serious factual inaccuracies and draws inaccurate and unfair conclusions. It includes misleading information, and by making false accusations of existing collaborations and alliances to advance pain relief and palliative care, concludes that there was corruption within WHO,” the coalition said. “No staff member of the offices of the U.S. representatives contacted any of the organizations or individuals mentioned in the document to seek our responses to the allegations made in the report.”

According to the coalition, the withdrawal of the guidelines could further impede the availability of pain medication in third world countries, where less than 2% of palliative care patients have access to opioids.

“Under-treatment of severe pain is reported in more than 150 countries,” the coalition said. “At least 5 billion people live in countries affected by the crisis of under-consumption, and more than 18 million annually die with untreated, excruciating pain.”

The coalition cited the case of a cancer patient in New Delhi, India, who wanted to die until she was able to obtain opioids through a CanSupport palliative care program.  

“I am a functioning human being in charge of my life once again. This has been made possible thanks to the oral morphine that I now take.”

— Cancer patient in New Delhi, India

“I was a human wreck. My family was at their wits end as to how to help me. Because of my excruciating pain, I could not sit, sleep, eat or drink, let alone speak or think. When the team first met me my first request to them was for an injection that would put me out of my misery,” the patient said.

“Today, I am a functioning human being in charge of my life once again. This has been made possible thanks to the oral morphine that I now take on a regular basis.”

The palliative care coalition said it was unfair to deny opioids to patients in third world countries because of abuse and addiction problems in the U.S. and other developed nations.  The coalition called on WHO to update and revise the guidelines “with all deliberate speed” and to reinstate them until the revisions are made.

Is Palliative Care an Option for Chronic Pain Patients?

By Rochelle Odell, PNN Columnist

Most of us have heard about 2016 CDC Opioid Guideline, which is supposed to be a voluntary guideline for primary care physicians treating non-cancer pain.

What has happened? In the span of two years the guideline has seemingly become law. Countless pain patients have made the trek to their doctor dreading the thought that their lifeline -- opioid pain medication – will be reduced or even discontinued.

Pain patients are often forced into surgical procedures such as epidural steroid injections or implants of spinal cord stimulators and other medical devices. The implants and injections all too often create more problems than they help. I know because I have had three different stimulators implanted and removed, as well as two pain pumps. The devices ultimately damaged my spine, compounding my Complex Regional Pain Syndrome (CRPS). 

Many of us are told if we do not undergo these invasive procedures our opioid medication will be stopped.  We are then forced to find a new physician for pain medication, a search that is often futile.

What happened to “patient driven healthcare” and freedom of choice in the so-called opioid epidemic? Is there anything patients can do?

Yes, we can request our physician determine if we meet the requirements for palliative care, which is specifically exempt from the CDC guideline.

Palliative care is often confused with end-of-life or hospice care, but imminent death is not a requirement for palliative care. The CDC defines palliative care in a way that many chronic and intractable pain patients would qualify for:

“Palliative care is defined… as care that provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness. Palliative care can begin early in the course of treatment for any serious illness that requires excellent management of pain or other distressing symptoms for cancer.”

The World Health Organization (WHO) takes a similar broad view of palliative care:

“Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

According to WHO, palliative care should include “a support system to help patients live as actively as possible” and “enhances quality of life.”

If these palliative care conditions are met, does it mean we are safe from having our opioid medication cutoff? Not necessarily. but it’s an option we should ask our doctors about.

Therein lies a possible roadblock. Too many physicians, nurses and healthcare organizations still associate palliative care with cancer and other diseases where the only outcome is death. 

The Alliance for the Treatment of Intractable Pain (ATIP) is working to enhance and clarify the definition of palliative care to include those suffering from chronic, intractable pain that may not be terminal. Cancer pain isn't necessarily different or anymore painful than the pain suffered by CRPS patients. Our pain is often worse, as there is no end in sight. The pain lasts a whole lifetime and we do not get better.

A case in point regarding the confusion over palliative care. A friend of mine was told that she qualified for palliative care. Great, one might think.  Her pain medication is still being prescribed, but her physician is afraid of losing his license and will not continue to prescribe her current dose or increase it. She will have to find a new pain management physician, assuming she can find one. 

I have been requesting for over two months that I be evaluated for palliative care, but my own pain management group "does not do palliative care." My case manager told me palliative care is only meant to keep the patient out the hospital.

My primary care physician's office has been working on my request and recently a doctor from Home Health Care came to my home to evaluate me. Not for palliative care, but for Transitional Care Management (TCM), a term I had not heard of. 

TCM is very much like palliative care in that the patient receives care from any needed medical specialty. A support system is put in place and whatever specialist I need to see will be covered.  The physician who did the evaluation based it not only on my medical records but by interviewing me and going over all my physical and mental health requirements. He noted I had been on high dose opioids and anti-anxiety medication and functioned with both them. He also recommended that my opioid medications be increased.

Will they be increased? I don't know yet, but a Home Health Care nurse will now be coming to my home on a regular basis. Unless I am unconscious and basically on death's door, I will not go to an emergency room for treatment. I refuse to wait hours on end only to be treated like a drug seeker. The nurse will come to my home and give me opioid medication if I need it. That is a definite plus and something I will not abuse.

These two avenues of palliative care and transitional care management appear to be a chronic pain patient's only options. Many doctors may not initiate either one. It is often the patient or patient's family who must push for care. Being alone and with no help means I will have to do more research and seek care even if it means contacting my physician's office multiple times. It’s the only option I have.

Rochelle Odell resides in California. She’s lived for nearly 25 years with Complex Regional Pain Syndrome (CRPS/RSD).

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

‘Opiophobia’ Leaves Millions Dying in Chronic Pain

By Pat Anson, Editor

More than 25 million people – most of them poor and living in developing countries – die each year in severe pain because they have little or no access to morphine and other painkillers, according to a new report.

A special commission created by The Lancet medical journal looked at pain care around the world and found major gaps in the availability of opioid pain medication. While opioid analgesics are relatively available in the United States and Canada, patients in many parts of the world have no access to them. In addition to the 25 million who die in pain, the commission estimated that another 35 million live with chronic pain that is untreated.

“The fact that access to such an inexpensive, essential, and effective intervention is denied to most patients in low-income and middle-income countries and in particular to poor people -- including many poor or otherwise vulnerable people in high-income countries -- is a medical, public health, and moral failing and a travesty of justice,” the Lancet commission found.

"Unlike many other essential health interventions already identified as priorities, the need for palliative care and pain relief has been largely ignored, even for the most vulnerable populations, including children with terminal illnesses and those living through humanitarian crises."

The voluminous report by 61 health experts from 25 countries took three years to prepare. It shared the story of a doctor in India who treated a patient named “Mr S” who suffered crippling pain from lung cancer. The doctor was able to provide him with morphine to relieve his pain, but when Mr S returned the next month, no morphine was available.

“Mr S told us with outward calm, ‘I shall come again next Wednesday. I will bring a piece of rope with me. If the tablets are still not here, I am going to hang myself from that tree.’ He pointed to the window. I believed he meant what he said,” the doctor said.

The commission said there were several barriers that stood in the way of effectively treating pain, including “opiophobia” – prejudice and misinformation about the medical value of opioids.

“A prevalent but unwarranted fear of non-medical use and addiction to opioids and opioid-induced side-effects, both among health-care providers and regulators and among patients and their families, has led to insufficient medical use. Unbalanced laws and excessive regulation perpetuate a negative feedback loop of poor access that mainly affects poor people,” the commission said.

“Efforts to prevent non-medical use of internationally controlled substances, such as morphine and other opioid analgesics, have overshadowed and crippled access to opioids for palliative care. These efforts have focused on preventing diversion and non-medical use rather than ensuring access by people with legitimate health needs.”

The commission also blamed the poor state of pain care on a tendency in the medical community to focus on curing and preventing disease, rather than preserving a patient’s quality of life and dignity.  

The report recommends that palliative care be included as part of universal health care coverage and that inexpensive morphine should be available “for any patient with medical need.”

Lessons about Palliative Care from Extreme Measures

By Roger Chriss, Columnist

The book Extreme Measures: Finding a Better Path to the End of Life by Jessica Nutik Zitter, MD, provides essential insights into palliative medicine and end-of-life care. It also gives important ideas for pain management that are all too often overlooked in healthcare today. 

Palliative medicine became a board-certified subspecialty of internal medicine in 2006. Zitter defines it as “an interdisciplinary approach to managing suffering in the context of medical illness, whether physical, emotional, familial, or spiritual.”

The importance of palliative care cannot be understated. As Zitter explains, over 50 percent of Americans die in pain, and 70 percent die in hospitals, nursing homes and other institutions.

The book opens with Zitter describing her background in medicine and how she came to appreciate the value of reducing the suffering and easing the process of death in the terminally ill.

“It took the palliative care movement to teach me that treating pain early on was one of the most important things I could do for my patients -- almost as important as maintaining blood pressure or treating infection,” she wrote.

American healthcare has focused on preserving life at all possible costs, often without respecting the desires or values of the patient. This is clearly visible in long-term acute care. Zitter tells us that annual admissions to acute care facilities tripled between 1997 and 2006, rising from 13,000 patients to more than 40,000. Of those 40,000 patients, 30 percent were partially or fully dependent on intensive interventions such as mechanical ventilation.  

Zitter calls this a treatment treadmill, a form of healthcare inertia that moves a person along to more aggressive interventions, even when there is essentially no hope of clinical benefit. She describes cases from her own professional experience, including a pancreatic cancer patient whose treatment team at New York Presbyterian was ready and willing to continue chemotherapy with curative intent, despite the spread of metastatic disease and the patient’s deteriorating health. 

In reference to such treatment, Zitter cites the remarks of Charles Blanke, MD, an oncologist, and Erik From, MD, a palliative care physician: “If an oncologist suspects the death of a patient in the next 6 months, the default should be no active treatment.”

In other words, chemotherapy should be given with palliative, but not curative intent.

“Let us help patients with metastatic cancer make good decisions at this sad, but often inevitable, stage. Let us not contribute to the suffering that cancer, and often associated therapy, brings, particularly at the end,” they advocate.

Unfortunately, aggressive treatment with curative intent is not limited to “A-Team” physicians at world-class oncology facilities.

Zitter discusses cases of older adults suffering from kidney failure, pneumonia, and cerebral hemorrhage, all subjected to painful and virtually pointless interventions that in some instances may have been against the patient’s wishes. 

The reasons, she says, are multifold. Doctors are caught in legal and ethical binds or may not realize the severity of their patients’ condition.

One study published in the British Medical Journal found that physicians' estimates of how long patients would live was over five times longer than the actual time they had left.

Similarly, patients may not have a good understanding of their illness or prognosis. Zitter states that “patients are more likely to learn realistic information about their disease trajectory and prognosis while in their doctor’s waiting room than during the actual office encounter.”

The interactions between patients, their families, and treating physicians may also be problematic. Breaking bad news to a patient is difficult for physicians, as Zitter recounts in several places in her book. And this is a problem in medicine in general.

"Doctors with good news were treated as much more compassionate than those with bad news, even when the news was delivered equally empathetically,” she wrote.

The book does not shy away from the ethical challenges of palliative medicine. Zitter relates the story of a patient she calls Mrs. Z, a woman who survived the Holocaust, but was unable to express preferences regarding her care. Zitter explains how difficult the decisions about a patient’s care become when a physician has to guess at the patient’s values and preferences. 

She gives the four principles of bioethics -- beneficence, nonmaleficence, justice, patient autonomy -- as guiding ideas for medical practice. It is not, in her view, a matter of simply “do no harm,” but rather acting in the best interests of the patient while knowing and respecting the patient’s values and preferences. 

Zitter’s focus is patient-centered care, which she states should be “a grounding principle at the core of every subspecialty in medicine, and within the hearts and minds of all physicians everywhere.” The goal is quality of life, restoring or improving function where possible, and easing the act of dying where unavoidable. 

But these ideas go beyond end-of-life care. As Zitter writes at the end of the book: “Palliative care isn’t only for the dying: any patient with serious symptoms or communication needs can benefit.”

She emphasizes this point with respect to pain management: “We should have protocols for a Code Pain like we do for Code Blue.”

The 1903 version of the American Medical Association’s Code of Medical Ethics states: “The medical attendant ought not to abandon a patient because deemed incurable; for, continued attention may be highly useful to the sufferer, and comforting the relatives, even in the last period of the fatal malady, by alleviating pain and by soothing mental anguish.”

We can do much more one hundred years later, but we have to ask ourselves when more becomes too much. Zitter encourages all of us to discuss our healthcare preferences with our family members and clearly document our choices, including those for end-of-life care. Her goal is ultimately the same as ours: to reduce pain and suffering throughout life. 

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why the CDC Needs to Recognize Palliative Care

By Barbara Nelson, PhD, Guest Columnist

A little over a year ago, the Centers for Disease Control and Prevention released its “Guideline for Prescribing Opioids for Chronic Pain.” Its goal is to help reduce the raging and heartbreaking overdose epidemic in the U.S.

Unexpectedly, the guideline has exposed the extraordinary need for palliative care for millions of patients who may live for decades with intractable pain. These patients now face enormous obstacles getting medically-needed opioids for effective pain control, especially when the dose exceeds the highest recommendation made in the guideline of 90 morphine milligram equivalents (MME) per day.

This unbending recommendation is too low to provide pain control that will keep many intractable pain patients out of agony.  In the last year, untold numbers of chronic pain patients requiring palliative care lost the correct opioid dose for their diseases -- making work, self-care, and family interactions harder or impossible.

I have seen this suffering, both personally and professionally.  I have an incurable and progressive neurological pain disease that, before diagnosis and some pain control, left me unable to read. My disorder profoundly changed my life as I previously knew it.

The dosage recommendations in the CDC guideline show no compassion for those with intractable pain, who will probably need higher opioid doses for the rest of their lives. Only later, when faced with terminal illness and imminent death, will official support for adequate pain control be acknowledged.

How Did We Get Here?

The objective of the guideline was to reduce opioid addiction and overdoses by limiting the dose and duration of prescriptions written by primary care doctors.

The guideline begins with support for “appropriate and compassionate” pain control for those with chronic pain.  It pays special attention to the chronic pain care needed by those fighting cancer, needing palliative care, or facing terminal illness. These three categories of pain are excluded from the CDC’s suggested highest daily opioid dosages because of their well-researched requirements for higher than average pain control, 

There is a problem to this approach, however.

The differences between these three categories are unclear to many doctors and patients. Most frequently, palliative care is confused with end-of-life or hospice care for cancer.  But palliative care is different from end-of-life care, because in palliative care there is no assumption of imminent death, nor is there a decision to withhold medication that might curtail the disease itself.

Chronic obstructive pulmonary disease (COPD), multiple sclerosis and sickle cell anemia are routinely considered diseases that can require palliative care, and these patients may live decades after their diagnoses.

The CDC guideline defines palliative care “as care that provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness. Palliative care can begin early in the course of any serious illness that requires excellent management of pain or other distressing symptoms.”

Not all diseases requiring palliative care also require opioids.  But those patients who require both palliative care and opioids are virtually invisible in the guideline.  Invisible patients get neither appropriate nor compassionate pain care.

The Need for a Palliative Care Appendix

The CDC should produce an appendix for all prescribers – not just primary care doctors – that would help them provide fully adequate pain relief to palliative care patients with life-long pain rather than near-death pain.  

The appendix could start by examining the legislative or regulatory language used in the 13 states that define intractable pain and that allow higher than typical opioid dosing.  The appendix also needs to emphasize research on the most painful long term diseases, which will offer physicians a wider variety and more specialized array of treatment options than is available from a focus on generalized chronic pain. 

The appendix could begin with the recognition that intractable pain patients needing palliative care do not get “high” or “euphoric.” Opioids are medicines that reduce pain and let them live closer to normal lives.

Helping physicians assist patients in organizing self-directed palliative care is another necessity, because most patients will not have access to a palliative care practice, let alone to one that is appropriate for their conditions. 

For patients with rare diseases, the CDC should emphasize the role of the doctor as learner as well as expert, as he or she must take the time to become familiar with a disease they may have never seen before. 

Yes, there may be some patients who attempt to scam the palliative care approach. However, I doubt that this kind of long-term pain is easily faked. The CDC guideline itself asks physicians to make dozens of new medical judgments. Acknowledging intractable chronic pain patients who require palliative care is just one more.

If the CDC does not add a palliative care appendix to the guideline, perhaps the American Academy of Pain Medicine, the American Medical Association or the American Academy of Hospice and Palliative Medicine could convene a group of all stakeholders to thoughtfully discuss the issues of pain treatment within palliative care.  Civil rights organizations that focus on inequality, including medical inequality, could contribute to this effort. 

Groups outside the CDC could also expand the mandate beyond training primary care physicians about opioid dosages, to include pain treatment for diseases requiring palliative care.

The conflict over opioid guidelines that are treated as laws or regulations, instead of recommendations, is not going away.  Several states, insurers and federal agencies have adopted versions of the CDC guideline, and others are sure to follow.  

Providing adequate pain control to palliative care patients would not make legislators, regulators or citizens any less committed to reducing misuse of opioid prescriptions.  In fact, drawing attention to palliative care would demonstrate a welcome dose of wisdom that millions of Americans would applaud.

Without an appendix to the CDC guideline or some other booklet that promotes correct palliative pain care, how will outstanding doctors be protected from unwarranted intrusions by insurance companies and drug enforcement organizations?  How will patients who deal correctly with pain that most people can’t imagine receive the palliative care that they deserve? They won’t.

The CDC’s “one-size-fits-all” guideline is bad medicine and bad policy. It ignores millions of intractable pain patients who require higher opioid doses.  

Everyone needs to recognize the importance of palliative care. You may need it someday. And unless changes are made, you won’t get appropriate medication either.

Barbara J. Nelson, PhD, is Dean Emerita of the UCLA Luskin School of Public Affairs and is Professor Emerita of UCLA’s Public Policy Department. She is the founder of The Concord Project, which builds social capital that allows people from divided communities to work together on projects of mutual benefit.

Barbara also directed The Leadership and Diversity Project, improving policy education and policy making through creative inclusion and enacted equality.  She served on the board of the Greater Los Angeles United Way.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.