By Bill Scott

After reading recent media reports such as The Seattle Times series, “Methadone and the politics of pain,” I’ve been saddened to learn of the overwhelming number of Washington residents living in chronic pain and/or addicted to painkillers. Also, the near universal frustration of both patients and providers for solutions is alarming.

I’m sure that all caring persons agree that no one should ever be left in agonizing pain, but is increasing dependence on painkillers the only answer?

For instance, why is this largely an American problem? With less than 5% of the world’s population, Americans consume 80% of painkillers sold. A recent comment on the Times website noted, “I just worked in Cuba. There (are) NO narcotics except for a couple of doses after major surgery. Tylenol is over the counter and ibuprofen by prescription. Somehow they manage and they have a lot less pain. Consider that paradox? They have no pain medicines and have less pain?”

According to recent news reports, I’ve been encouraged to hear that some patients are managing to get off painkillers, including Cynthia Toussaint. From an ABC NEWS report last June, she “was confined to her bed, writhing in pain from muscle spasms, unable to walk or to live a meaningful life.”

Yet, ten years later, after turning to a variety of integrative medicine treatments, she resumed her singing career. Toussaint noted, “There’s a whole range of under-appreciated non-traditional treatment options that are low-cost, effective and with no side effects.”

A recent article in The St. Petersburg Times explains how addiction to prescription painkillers nearly killed ex-NFL star Randy Grimes. Yet, at a point that Grimes describes as “a spiritual moment,” he began to regain control of his life, found renewed purpose and now works to help others to overcome the same addiction. Throughout my entire life, I’ve taken a spiritual approach to my own health and have experienced consistent, positive results.

It’s also encouraging to read reports on therapeutic approaches that focus on thought and the mind in reducing pain. Studies at Stanford, Duke and Wake Forrest Universities have proven many mind-body approaches to be effective in clinical trials.

One reason alternative therapies are not more commonly used by the public appears to be the lack of insurance coverage. According to The Seattle Times, Rep. Jim Moeller believes it is “unfortunate” that Medicaid covers narcotic painkillers but not alternative treatments.

However, there are signs this may be changing. From a recent press release, starting in July of 2012 the 13,000 employees of Maricopa County, Arizona will soon have the option of an integrative approach “that embodies the philosophy and practice of healing oriented medicine, addressing mind, body and spirit.”

Specialists who work with patients dealing with pain have told me they support expanding health coverage to include alternative therapies that are less obtrusive and generally more affordable.

On Dec. 16, the Obama administration surprised many by declaring that each state will now be allowed to have greater freedom in what their respective health exchanges will include.

This may be a unique opportunity to include alternative treatments, especially the treatments that already qualify as medical expense deductions for federal income tax purposes. Including alternative therapies in health insurance will make them more accessible to patients who may be struggling to find better ways to manage their pain.

This article first appeared on Blogcritics.

A retired architect, Bill Scott writes about spirituality and health for Blogcritics.org and also serves as the Christian Science Committee on Publication for Washington State.

In the series, the Times reported that in order to save money the state steers Medicaid patients, workers’ compensation recipients and state employers toward methadone, a long acting drug that costs less than a dollar a dose.

The drug’s effects, however, are unpredictable, increasing the risk of overdose, and the Times investigators found that since 2003 at least 2,173 people in Washington had died from unintentional overdoses linked to the drug.

In today’s article, the Times writes:

The health advisory marks the first public acknowledgment by a powerful state committee that methadone can be more unpredictable than other pain drugs, or opioids. State officials had previously resisted attempts to single out methadone for special treatment, insisting the drug was as safe and effective as any other narcotic pain drug.

To learn more:

• Read today’s article in the Seattle Times: State plans emergency warning on risks of methadone.

Read the Seattle Times series:

Part 1: Silent deaths

State pushes drug that saves money, costs lives

Timeline: State defends methadone as deaths rise

How we did it: our analysis

Part 2: Politics of pain

New law leaves patients in pain

Source documents

Part 3: A troubled clinic

In pain clinic’s wake: doubts, chaos, deaths

Source documents

Graphics

More deaths from methadone than other drugs

The paper argues drug is dangerously unpredictable and responsible for the deaths of hundreds, particularly among the poor.

At the same time, the state has adopted tough new prescription rules that are making it difficult for patients with chronic pain to find doctors willing to treat them, the paper reports.

The series is written by Seattle Times staff reporters Michael J. Berens and Ken Armstrong.

To learn more read the paper’s series: The Politics of Pain.

• State pushes drug that saves money, costs lives

To cut costs, Washington steers Medicaid patients to a narcotic painkiller that costs less than a dollar a dose. The state insists methadone is safe. But hundreds die each year — and more than anyone else, the poor pay the price.

• New state law leaves patients in pain

It was meant to curb rising overdose deaths. But Washington’s new pain-management law makes it so difficult for doctors to treat pain that many have stopped trying, leaving legions of patients without life-enabling medication.

By Jessica Marcy

A poll released Tuesday found that an overwhelming majority of doctors support palliative care, with 96 percent responding that they believe enhancing the quality of life for seriously ill patients is more important than extending life as long as possible.

Despite these sentiments, many physicians responded that they have some hesitations about palliative care and that there are barriers to its full adoption.

Notably, the poll, released by National Journal, also found a dramatic “generation gap” in physicians’ education and training on palliative care.

Seventy-three percent of physicians age 39 or younger report “a great deal” or “some” exposure to palliative care during medical school compared to 36 percent of those age 40-49, 23 percent of those age 50-59, and only 6 percent of those age 60 or older.

Ezekiel Emanuel

Speaking at a National Journal event Tuesday, oncologist and bioethicist Ezekiel Emanuel, who currently teaches at the University of Pennsylvania, called upon the medical community to push for even greater incorporation of palliative care into the health system.

Emanuel, the brother of Chicago Mayor Rahm Emanuel, said that his own career illustrates the major transformation in end-of-life care training. In 1984, during his third year of medical school, he decided to switch gears to pursue a PhD on end-of-life care issues, noting that his adviser told him, “That’s a career ender. Nobody wants to talk about end-of-life care.”

Despite such initial discouragement, he went on to incorporate palliative care in oncology treatment at the Dana-Farber Cancer Institute and later served as the founding chair of the Department of Bioethics at the NIH Clinical Center until last August and as a special health policy adviser at the White House, where he raised attention about ethical issues in end-of-life care.

Meanwhile, the poll found that 91 percent of physicians believe patients are not adequately informed about palliative care; other physician concerns include that patients are reluctant to accept it because it means they might not recover, health insurance companies and Medicare don’t reimburse adequately for consultations, there aren’t enough palliative care physicians and services and patients can’t afford the care.

Many physicians also reported that they received little training on operational and financial aspects of palliative care and that they would like more on those topics.

Shannon Brownlee, the New American Foundation’s acting health policy director, expressed concerns that the current reimbursement system inhibits the full use of palliative care, which would lead to the reduction of expensive treatment.

“This is the horrible dilemma that hospitals find themselves in,” Brownlee said. “When you reduce that volume, you’re punished.”

Emanuel said that at some point insurers and Medicare will have to “make a leap together” to better support paying for palliative care. Emanuel, recalling Republican charges that the 2010 health law would establish “death panels,” noted that such political tactics “completely backfired.” Instead, he said they reinvigorated physicians’ efforts to improve end-of-life care.

“My inbox was flooded with support from physicians and it renewed the recognition by physicians that we have to do something on this,” Emanuel said.

The poll, conducted by FTI Consulting and commissioned by National Journal, surveyed 500 board-certified physicians, 45 percent of whom were primary care providers and 55 percent specialists between Oct. 28-Nov. 2.  The poll has a margin of error of plus or minus 4 points.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

Jim Young and his children

In January 2010, after beginning treatment for chronic Lyme disease, 53-year-old Jim Young lost significant weight and struggled to breathe.

Doctors admitted him to a private room in the hospital, but within 15 hours, his wife Erica Kosal received a call about his imminent transfer to the intensive care unit (ICU).

The first time seeing him in the ICU came as a shock to Kosal, 42, a college professor. “I can remember he was hooked up to all kind of machines. He looked so deflated. He was out of it and really sleepy and confused. He didn’t look like the same person and I wasn’t prepared for that,” Kosal said.

Several days after giving birth in 2003, marketing agency owner Ann Albergotti, then 35, woke to a throbbing headache and temporary blindness.

After doctors diagnosed her with a stroke in the ER, she spent 5 days in the ICU. Her nurses and doctors kept her and her family well informed: “I knew what was happening, what was going to happen and why,” Albergotti said.

But when her 76-year-old mother was admitted to the ICU last year for a collapsed lung, the flow of information between staff and family didn’t run so smoothly.

“When her condition worsened, it happened overnight and at a time when the family had left for the night to return in the early morning. We didn’t find out what happened until our return and we had specifically asked that if her condition changed while we were away, that we get a call. That was upsetting,” Albergotti said.

Like Young and Albergotti, every year more than 5 million people in the United States spend time in intensive care units for acute injuries or life-threatening illnesses.

For patients, family members and friends, the ICU experience is often emotional and confusing.

Who’s Who in the ICU

If you or a loved one is in the ICU (sometimes referred to as critical care), you’ll come in contact with a variety of medical professionals. Here’s a brief who’s who:

Intensivist:

Doctors who diagnose ICU patients and direct their care and treatment are called intensivists. These physicians, also called critical care doctors, have specialty and subspecialty training in treating critically injured and ill patients. Intensivists usually work in the ICU full-time.

 ICU nurse/critical care nurse:

ICU nurses implement the intensivist’s plan of care. They monitor the patient, assess pain, administer medications, and perform tasks such as placing tubes and managing ventilators and dialysis. They also work closely with families, explaining the patient’s condition and care.

Nurse manager:

The nursing unit manager, or charge nurse, oversees the nursing care in the ICU and assists the nurses when necessary.

Specialty physician:

“Whatever the patient’s primary sickness is, those doctors will be there in addition to the primary critical care doctor,” Adalja said. Inside the ICU, you may see other specialists, such as gastroenterologists, surgeons, neurologists and infectious disease doctors.

Pharmacist:

Pharmacists prescribe medicine dosages for ICU patients. Like intensivists, ICU pharmacists have specialty training in prescribing medicines for critically ill and injured patients.

Therapist:

Several types of therapists work with the critical care team. Respiratory therapists help ICU staff monitor the patient’s breathing. Physical therapists work to minimize permanent disabilities. Occupational therapists in the ICU help reduce patient’s disability at work and at home.

Social worker:

Families in the ICU may benefit from talking to a clinical social worker (sometimes called a case manager), a person trained to help with communication between medical team members and family. An ICU social worker may offer emotional support, provide referrals to community resources, assist with the transition out of the ICU and help families navigate the end-of-life decision making process.

Clergy/chaplains:

Hospital clergy members provide emotional and spiritual support to ICU patients and their families. Some ICUs have their own dedicated chaplains; others have a hospital chaplain that serves patients and family in all hospital units.

The Sickest Patients

Photo by Hamma

If you’ve ever visited a family member or friend in the ICU, your stomach sick with fear and worry, you may have wondered — why the ICU? Why not some other hospital unit?

“ICUs take care of the sickest patients in the hospital,” said Amesh A. Adalja, MD, FACP, a clinical assistant professor in the department of critical care medicine at the University of Pittsburgh Medical Center.

People who’ve experienced heart attacks, strokes, surgical complications and severe respiratory problems receive care in the ICU. The ICU also provides trauma care for those who’ve been severely injured in automobile accidents or from gunshot wounds, fires, falls or industrial accidents.

What sets the ICU — sometimes referred to as the critical care unit — apart from the emergency department or other hospital units is that ICU patients require continuous monitoring and sometimes, advanced machinery to support their life functions.

For example, a patient whose kidney function is impaired may receive intermittent dialysis in other areas of the hospital. But a patient who needs dialysis around the clock requires ICU care.

Patients who need regular suctioning of the respiratory tract, who require a ventilator to help them breathe or who need infusions of medicines to keep their blood pressure stable are other examples of those requiring ICU monitoring.

The ICU also differs from other hospital units in its much lower ratio of nurses to patients. ICU nurses typically care for only one or two patients. In other areas of the hospital, nurses may be responsible for six or more patients.

Not all ICUs are created equal, and the size of the hospital you’re visiting plays a role in the type of ICU environment you’ll experience. Smaller hospitals may have only one ICU that takes all types of patients.

In larger hospitals, there may be multiple ICUs, each specializing in a certain type of critical illness, such as stroke or cardiac or thoracic surgery.

How the ICU looks also varies from hospital to hospital and unit to unit. In general, though, ICUs tend to be more open, compared to other areas of the hospital. ICU “rooms” may not have a door, they may be enclosed only on three sides, or the door or room may be transparent so that staff can more easily monitor patients by sight from a central desk.

“Compared to other areas of the hospital, ICUs are also busier, faster, with a large number of people and lots of equipment around each bed. There is also more ambient noise than in many other hospital areas from things like monitors, ventilators and other medical devices,” said Linda Bell, MSN, RN, a clinical practice specialist with the American Association of Critical-Care Nurses.

Putting Family at Ease

Most of the time, patients admitted to the ICU come from other areas of the hospital. Like Erica Kosal, family members may receive a call from emergency services or another hospital unit letting them know their loved one is being transferred to the ICU.

“They’re stressed, so it’s important to put them at ease. We try to give them an overall picture of what’s going on with the patient,” said Michael Bergman, MD, director of the ICU at University Hospital of Brooklyn at Long Island College.

When families first get to the ICU, the nursing staff typically explains what will happen at the patient’s bedside, what type of monitoring they’re on and what the plan of care will be, said Barbara Maffia, RN, ICU Nurse Manager at University Hospital of Brooklyn at Long Island College. Nurses in the ICU may also ask the family whether the patient has a health care proxy, a person to make medical decisions for them.

Bergman points out that ICUs are stressful environments for both family members and medical staff. “In other hospital units, doctors may know the patient’s diagnosis before the patient is treated. In the ICUs, the diagnostic process goes on while treatment goes on. In ICUs, if the patient is sick, a lot of times we don’t have all the answers of what’s going on. You’re trying to stabilize blood pressure, fluid status and other issues while trying to figure out what caused all this,” said Dr. Bergman.

Keeping Family and Friends Informed

For some people, a phone-tree is an efficient way to pass along information (one person calls three people with updates, who each call three others, etc.) But for many, there’s no longer a need for a phone tree: the families of today’s ICU patients can easily keep out-of-town friends and family informed by creating a simple blog-style, privacy-protected patient website. Family members can update everyone on the patient’s condition at once, share photos and receive messages of support. Try these free resources:

• CarePages
• Caring Bridge
• LotsaHelpingHands
• MyLifeLine

Seeing Your Loved One

Finding out your loved one is in the ICU is difficult. Seeing your loved one in the ICU environment often proves startling and upsetting. Though this experience is usually emotional, knowing what to expect may help you remain strong when first arriving.

Your loved one’s appearance may have changed drastically from the last time you saw him or her. ICU patients may have bruising because of blood tests, clotting problems or injury. Many patients in the ICU experience facial swelling due to medications or from injury. The patient may have tubes in his or her nose or mouth. You may see bandages to help hold tubes in place. Your loved one may need a catheter to collect urine or a temporary or permanent opening in the stomach to collect urine and stool.

If you’re visiting someone in the ICU, don’t be surprised if you’re asked to leave during certain medical procedures, such as central or intravenous line placement or catheterization. The medical staff informs family of the need for these procedures beforehand, but encourages them to step away from the patient’s room—but with good reason.

“You may think that they’re being put through discomfort when they’re not. These procedures can be quite traumatic for families to watch,” and having family members in the room can cause added stress for medical personnel performing the procedures, Bergman said.

The aftereffects of certain procedures, such as breathing tube insertion, can cause pain in the throat, making speech difficult. In addition, fluctuations in body fluids and chemicals in the blood can interfere with a person’s cognitive ability, making it difficult to think clearly or talk.

Finally, the medicines used to manage the pain associated with critical illness may cause big changes in how your loved one talks and acts, causing disorientation, hostility or confusion.

Managing pain is an important aspect of ICU care for critically ill patients. “Many patients have pain, discomfort or agitation, either because of illness or because of the procedures being done. ICU teams put a great emphasis on relieving pain and discomfort,” Bergman said. Patients in ICU may receive analgesics, or pain-relieving medications, as well as sedatives to reduce anxiety.

As part of ICU care, nurses reassess pain regularly and administer medications as necessary. But if you notice distinct changes in your loved one’s personality or feel that the patient looks uncomfortable, it doesn’t hurt to advocate for your loved one. You should approach the ICU nurse, and say “to me, she looks uncomfortable,” Bergman said.

A Family Affair

When it comes to family member visitation in the ICU, the policies vary from hospital to hospital and from unit to unit. Nurses often have some discretion to either expand or limit family access, but generally any adult who wants to visit during visiting hours will be allowed to, Adalja said.

Bergman noted that his ICU limits patient visitation in the morning, when nurses and physicians are busiest assessing pain levels, performing procedures and administering medications.

In the busy ICU environment, family members may feel that getting the answers to their questions is a challenge. Bell recommends designating a single family member to act as the conduit for information for the rest of the family who is prepared to write down questions they may have to discuss with the clinical team at a convenient time. Critical care is full of jargon, so stopping a doctor to politely ask, “What does that mean?” is a useful strategy to get answers to your questions, Bergman said.

While you’re visiting your loved one in the ICU, it’s easy to feel helpless among the medical machinery and highly trained staff. But Bell notes that patients may benefit from the touch and assistance of friends and family.

“They might also want to ask if it’s okay for them to help with some of the routine care, things like combing hair, swabbing the mouth, massaging or putting lotion on the arms or legs,” Bell said.

To help ease Young’s ICU recovery, Kosal brought in photos of their children and a special pillow for him to use after his tracheostomy. Both Young and his daughter designated a special stuffed animal that they could hold when missing each other, Kosal said.

In the wake of stress and worry that invariably accompanies a loved one’s ICU stay, don’t neglect your own needs. “The hard part for family members will come when the patient is discharged and in need of additional care at home. So it is vitally important that family members take time to eat, rest and take care of their personal needs,” Bell said.

Photo of the ICU monitor by Hamma

Health Behavior News Service is part of the Center for Advancing Health

The Health Behavior News Service disseminates news stories on the latest findings from peer-reviewed research journals. HBNS covers both new studies and systematic reviews of studies on (1) the effects of behavior on health, (2) health disparities data and (3) patient engagement research. The goal of HBNS stories is to present the facts for readers to understand and use for themselves to make informed choices about health and health care.