Shedding New Light On Hospice Care

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Woman and caregiverEarlier this year, Kathy’s 86-year-old mother was hospitalized in Colorado after a fall. As she rushed to her side, Kathy asked for a consultation with a palliative care nurse.

“I wanted someone to make sure my mother was on the right medications,” Kathy said.

For all her expertise — Kathy Brandt advises end-of-life organizations across the country — she was taken aback when the nurse suggested hospice care for her mother, who has advanced chronic obstructive pulmonary disease, kidney disease and a rapid, irregular heartbeat.

“I was amazed — really?” Kathy said, struggling with shock.

It’s a common reaction. Although hospices now serve more than 1.4 million people a year, this specialized type of care, meant for people with six months or less to live, continues to evoke resistance, fear and misunderstanding.

“The biggest misperception about hospice is that it’s ‘brink-of-death care,’” says Patricia Mehnert, a longtime hospice nurse and interim chief executive officer of TRU Community Care, the first hospice in Colorado.

In fact, hospice care often makes a considerable difference for those with months to live. “When someone is further out from death, we can really focus on enhancing their quality of life,” says Rachel Behrendt, senior vice president of Hospice of the Valley, which serves the Phoenix metropolitan area.

New research confirms that hospice patients report better pain control, more satisfaction with their care and fewer deaths in the hospital or intensive care units than other people with a similar short life expectancy.

What should seniors and their families, the largest users of hospice care, expect? It’s fairly well understood that patients forgo curative therapies in favor of comfort care when they enter hospice. Here are additional features:

Four Levels Of Care

Hospice providers are required to offer routine care in patients’ homes (this includes seniors who reside in assisted living or nursing homes); continuous care at home for people with out-of-control symptoms such as pain or breathing problems; inpatient respite for families that need a break from caring for a loved one; and general inpatient care for medical crises that cannot be handled in any other setting.

With continuous care, a nurse must be on-site in the home for at least eight hours a day, helping to bring symptoms under control. Usually, this will happen in one to three days. Respite care has a maximum limit of five days.

Some hospices have their own general inpatient facilities and “it’s a common misconception that patients are sent to inpatient hospice to die,” says Jean Cohn, clinical manager at Montgomery Hospice’s inpatient facility, Casey House. “In fact, we’re frequently fine-tuning patients’ regimens in inpatient hospice and sending them back home.”

Intermittent Care At Home

Routine care at home is by far the most common service, accounting for about 94 percent of hospice care, according to the latest report from the National Hospice and Palliative Care Organization.

While services vary depending on a patient’s needs, home care typically involves at least one weekly visit from a nurse and a couple of visits from aides for up to 90 minutes. Also, a volunteer may visit, if a patient and family so choose, and social workers and chaplains are available to address practical and spiritual concerns.

Hospices will provide all medications needed to address the underlying illness that is expected to cause the patient’s death, as well as medical equipment such as hospital beds, commodes, wheelchairs, walkers and oxygen. Typically, there is no charge for such gear, although a copay of up to $5 per prescription is allowed.

What families and patients often do not realize: Hospice staff will not be in the home every day, around the clock. “Many people think that hospice will be there all the time, but it does not work that way,” Brandt says. “The family is still the front line for providing day-to-day care.”

In assisted living, patients or their families may have to hire nursing assistants or companions to provide supplemental care, since hands-on help is limited. In nursing homes, aides may visit less often, since more hands-on help is available on-site.

Self-Referrals Are Allowed

Anyone can ask for a consultation with a hospice. “We get many self-referrals, as well as referrals from family and friends,” says Behrendt of Hospice of the Valley. Usually, a nurse will visit and do a preliminary assessment to determine if a person would qualify for hospice services.

To be admitted, two physicians — the patient’s primary care physician and the hospice physician — need to certify that the person’s life expectancy is six months or less, based on the anticipated trajectory of the patient’s underlying illness. And re-certification will be required at regular intervals.

A Person Can Choose Their Physician

A person has a right to keep their primary care physician or they can choose to have a hospice physician be in charge of their medical care.

At JourneyCare, the largest hospice in Illinois, “we prefer that the patient retains their primary care physician because that physician knows them best,” says Dr. Mark Grzeskowiak, vice president of medical services.

These arrangements require close collaboration. For instance, if a nurse observes that a patient with heart failure is experiencing increased shortness of breath, JourneyCare staff will get in touch with that patient’s primary care physician. The physician is responsible for altering the treatment plan; the hospice is responsible for implementing that plan and giving clear instructions to the patient and family.

Concerns About Medications

“There’s a misconception that a person is going to be medicated to a highly sedated state in hospice,” says Dr. Christopher Kerr, chief executive officer and chief medical officer for Hospice Buffalo Inc. in upstate New York. “The reality of our primary goal is to increase quality wakefulness. Managing these medications is an art and we’re highly experienced.”

Family caregivers are on the front line since they are responsible for administering pain medications such as morphine. “Absolutely, there’s a great deal of fear and anxiety around all the issues associated with giving medications,” says Cohn of Montgomery Hospice. “We try to reassure caregivers that the doses we start with are very small, monitor how the patient reacts, and go deliberately slow.”

Because most hospice stays are short — the median length is only 17 days — and because the diversion of painkillers from people’s homes is a risk, doctors have begun writing prescriptions for a week or two at a time, says Judi Lund Person, vice president of regulatory and compliance for the National Hospice and Palliative Care Organization. If concerns exist, hospices can have a lockbox for medications sent to the home.

Discharges Are Possible

Estimating when someone is going to die is an art, not a science, and each year hundreds of thousands of hospice patients live longer than doctors anticipate.

If physicians can document continued decline in these patients — for instance, worsening pain or a noticeable advance in their underlying illness — they might be able to re-certify them for ongoing hospice care. But if the patient is considered stable, they will be discharged, various experts say.

In 2015, nearly 17 percent of hospice patients were so-called live discharges, according to a report from the Medicare Payment Advisory Commission. Two days before a discharge, hospices are required to give the patient or family members a Notice of Medicare Non-Coverage. Expedited appeals of discharge decisions can be lodged with a Medicare quality improvement organization.

There are no regulatory requirements governing what hospices should do to facilitate live discharges. Some hospices will spend weeks helping patients make arrangements to receive medications, medical equipment and ongoing care from other sources. Others offer minimal assistance.

At The Very End

Almost 1 in 8 hospice patients do not get visits from professional staff during their last two days of life, according to a study published in JAMA Internal Medicine last year. And this can leave families without needed support.

Some hospices have responded by creating programs specifically for people who have a very short time left to live. “We’ve put together a special team for people who are expected to live 10 days or less because that requires a different kind of management,” says Ann Mitchell, chief executive officer of Montgomery Hospice. “Instead of a nurse for every 15 patients, a nurse on this team will have five to six patients and a social worker is available seven days a week.”

“One-third of our patients are here for less than seven days and often we receive them in a crisis,” says Kerr of Hospice Buffalo. “We’ve had to re-purpose our services to address the urgency and complexity of these patients’ needs and that means we have to be ever more present.” Across the board, Hospice Buffalo requires that patients be seen within 24 hours of an expected death.

Old-School Pharmacy Hand Delivers Drugs

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Grubbs PharmacyIf House Speaker Paul Ryan comes down with the flu this winter, he and his security detail will not be driving to the closest CVS for Tamiflu, a little-known perk for the powerful members of Congress. 

Instead, he can just walk downstairs and pick up the pills, open to every member of Congress, from Ryan and Majority Leader Mitch McConnell down to the newest freshman Democrat or Republican.

Nearly every day, for at least two decades, pharmaceutical drugs have been brought by the carload to the Capitol — an arrangement so under the radar that even pharmacy lobbyists, who regularly pitch Congress in their industry, are not aware.

The deliveries arrive at the secretive Office of the Attending Physician, an elaborate medical clinic where Navy doctors triage medical emergencies and provide basic health care for lawmakers who pay an annual fee of just over $600. Every medicine comes from Washington’s oldest community pharmacy, Grubb’s.

Mike Kim, the reserved pharmacist-turned-owner of the pharmacy, says he has become familiar with knowing the most sensitive details about some of the most famous people in Washington.

“At first it’s cool, and then I realize, I’m filling prescription drugs that are for some serious health problems (i.e. diabetes and Alzheimers). And these are the people who are running the country,” Kim says.

“It makes me kind of sit back and say, ‘Wow, they’re making the highest laws of the land and they might not even remember what happened yesterday.’

Kim’s tiny pharmacy — which, at its busiest, sends as many as 100 prescriptions to members in a day — is nestled among Capitol Hill’s stateliest row houses, less than four blocks from the Capitol building. Founded in 1867 and named for a previous owner, the pharmacy predates penicillin, the American health insurance system, and even the Lincoln Memorial.

The two-story nostalgic shop, with its bay windows and wood counters, is reminiscent of the past, though the computer systems and supplements inside are not far removed from a typical Walgreen’s or CVS counter — if all the inventory in a pharmacy of today were placed into the nooks and crannies of three small aisles and labeled with individual stickers. At Grubb’s, staff will even scoop Hershey’s ice cream into cones from a small counter in the corner, a modern-day nod to the marble-topped soda fountain once popular with the neighborhood kids.

The pharmacy mostly serves the staffers, lobbyists, and families who make their home in the quiet, leafy neighborhood just east of the Capitol building, though Grubb’s five drivers will deliver prescriptions across the entire city. Some 800 prescriptions leave its doors every day, filled by three dozen pharmacists, technicians, and support staff.

The relationship between Grubb’s and the Capitol has gone nearly unchanged for decades, even as congressional leaders have pushed again and again to overhaul the nation’s broader health care system.

For the most part, lawmakers get the same prescription delivery service as any other customer of Grubb’s. The pharmacy still bills each lawmaker’s insurance plan. Grubb’s keeps credit card information on file for co-pays and other purchases. There are no discounts, Kim says. No special treatment.

“The Capitol takes somewhat of a precedence just because of who we are servicing,” Kim says. “The member might be calling to say, ‘I’m about to leave in five minutes, where’s my drug? So [the clinicians at the Capitol] get into panic mode. I wouldn’t say they’ve ever become frustrated with us, but it’s a concern, ‘Oh my gosh, the member just called asking about their drug.’

Those busy moments are much more prevalent in winter, when lawmakers have been in session for a while and when they might be facing more late-night vote sessions, Kim says. During August recess, the Capitol pharmacy business — like much of Washington’s economy — slows considerably.

Most lawmakers know far more about the Office of the Attending Physician than about Grubb’s or its arrangement with Congress. In a STAT survey of two dozen House and Senate members from both parties, only one knew about the single pharmacy that delivers all their drugs: Congress’s only pharmacist, Rep. Buddy Carter (R-Ga.).

“It’s a great opportunity for us, as pharmacists, to showcase what we do because what we do is take care of patients,” Carter told STAT. “This is another example of how we go above and beyond our call of duty to help people in health care.”

Others were quick to praise the Navy doctors and nurses in the Office of the Attending Physician, which has at least one pharmacist and several technicians on its staff.

Lawmakers describe the Office of the Attending Physician as a modern space much like a regular doctor’s office — though the $3.7 million budget it enjoyed for 2016 suggests a relatively well-furnished space. It’s strictly off-limits to reporters.

The office is not without controversy. Its services — and the relatively low fees that members must pay for access — were thrust into a harsh spotlight in 2009, as Congress began to debate the Affordable Care Act and as reporters began to ask how lawmakers’ own care might color their perspectives on policy. The central issue is the cost: In 2016, lawmakers paid $611 for annual membership — a fee that, unlike most health care prices, has risen much slower than inflation. In 1992, the first year the office charged a fee, it was $520.

The Office of the Attending Physician itself was formed in 1928, after three members of Congress died in their offices within months of one another — more than 50 years after Grubb’s first opened its doors.

But the pharmacy services at the Capitol may go back even further — a 1911 text on senatorial privileges describes an “assortment of drugs and viands, tonics and recuperatives” on hand and “readily accessible” for lawmakers. Back then, reportedly, senators took tablet after tablet and vial after vial of quinine, pepsin, and calomel, “endless supplies of cough drops,” and something described as “dandruff cure.”

It’s not clear how long Congress has contracted with Grubb’s to provide private prescriptions, but a 1992 review of the OAP — hastened after one senator threatened to make his colleagues pay market prices for the free care they got at OAP — decreed that prescription pharmaceuticals for lawmakers should be obtained through private pharmacies and paid for by the lawmakers themselves, according to a memo shared with STAT by the Senate historian.

It’s not clear, either, just how many drugs the OAP keeps on hand, whether for members or emergencies. But Dr. Lee Mandel, a retired Navy physician who spent several years working for OAP in the 1980s, remembers a well-stocked pharmacy just off the main corridor under the speaker’s office.

“We provided some pretty comprehensive service, to keep the members doing their jobs so they didn’t have to go look for a doctor,” he told STAT. “As far as all medications, I don’t know — maybe the more exotic ones we didn’t — but we probably did stock [most drugs] on their behalf.”

Kim, 47, knows only that the OAP’s relationship with Grubb’s has existed since at least 1997, when he joined the staff part-time as he finished his training at Howard University.

Not much has changed since then, though enhanced security protocols after 9/11 ended the pharmacy’s practice of driving each prescription to an individual member’s office and collecting cash in-person. Now, the drivers — all of whom have undergone a Capitol Police background check — head straight to OAP.

After 20 years at Grubb’s, Kim himself is not nearly so starstruck by the lawmakers. Even when they stop by the shop in-person, he says they’re just like any other customer.

“I still remember John Kerry — it was literally the day after he lost [the 2004 presidential election], he came in and was just standing in line with everybody else,” Kim recalled. “I just remember seeing him standing in line and almost feeling sorry for him — one day he’s a superstar, he’s got his entourage and security detail, and the next day he’s just by himself, picking up his prescription.”

Though Kim himself is active in the National Community Pharmacists Association that lobbies on behalf of the industry, he said he usually does not push lawmakers to talk shop when they are in line as customers.

Although he isn’t lobbying Congress, Kim is still working to improve his relationship with OAP. He desperately wants the office to use an electronic system to route prescriptions to the pharmacy, rather than having their physicians call them in every time.

The “back to back” calls are slowing down the rest of his business, and he thinks it’s important to have a clearer record of what prescriptions are ordered than a phone call can provide.

Those frustrations aside, however, Kim is proud of the work he does for the powerful figures who dominate Washington’s attention.

“It’s definitely a special arrangement that no other pharmacy in the country has,” he says. “In other states, [a community pharmacy] may fill prescriptions for maybe one or two members. But at this location, we are servicing almost every member from all across the country. It’s very cool.”

Holistic Approach To Eliminating Opioids

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Couple exercising

Each year, more than 300 patients with chronic pain take part in a three-week program at the Pain Rehabilitation Center at Mayo Clinic in Rochester, Minnesota. 

Their complaints range widely, from specific problems such as intractable lower-back pain to systemic issues such as fibromyalgia. By the time patients enroll, many have tried just about everything to get their chronic pain under control. Half are taking opioids.

In this 40-year-old program, that’s a deal breaker. Participants must agree to taper off pain medications during their time at Mayo.

More than 80 percent of the patients who enroll stay for the entire program, said Wesley Gilliam, the center’s clinical director, and many previous opioid users who finish the treatment report six months later that they have been able to stay off opioids. Just as important, he added, they have learned strategies to deal with their pain.

But such a program is not for everyone. Insurers might disagree that the intensive, interdisciplinary approach is medically necessary for some patients or simply not cover the program’s billing codes, he said. Mayo’s insurance team is sometimes an advocator on a patient’s behalf if they are a good candidate for treatment, however,  success is not assured.

Mayo’s program is not the only one to address the emotional, social and psychological aspects of pain, and other programs also focus on reducing patients’ reliance on addictive medications to manage their pain. But as our nation weathers an opioid epidemic, there are too few programs like these around the country to address the need, Gilliam says.

Gilliam, is a clinical psychologist with a specialty in behavioral pain management and talks about the program.

Q: How do pain medications work? By blunting the pain?

They blunt some of the pain. Opioids are very effective for acute problems, but they were never designed to be used chronically. They are not effective in the long term.

Opioids are central nervous system depressants. They soothe people who are in distress. Many people are not demonstrating improved functioning when they take opioids; it’s calming their nerves and it’s chemical coping.

Q: In treating pain, does it matter what may be the cause or it’s severity?

Pain is pain. The fundamental approach to self-managing it does not change based on the cause or severity of the pain. 

Q: How is someone chosen for a program such as yours?

Virtually all of our patients have tried and exhausted primary and secondary treatment options for pain.

[In] primary care, a patient has a complaint and a treatment plan is developed. It generally involves encouraging the patient to be active, to stretch, maybe the doctor initiates a non-opioid medication like a non-steroidal anti-inflammatory or an antidepressant.

If the patient continues to complain of chronic pain, the primary care provider will step up to level two and refer someone to a neurologist or maybe a pain psychologist or pain anesthesiologist.

If patients do not respond, they start to think about step three, which is a pain program like Mayo.

Q: How does the Mayo program work?

People come to us every weekday from 8 a.m. to 4 p.m. for three weeks.

We do not take a medical approach. It’s a biopsychosocial approach, [which] acknowledges not only the biological aspect of pain, but also recognizes that psychological and social variables contribute to how people experience pain.

That is not to say that pain is imagined, but rather how people experience pain is influenced by mood, anxiety and how that person’s environment responds to the person’s symptoms.

A more medical approach tends to focus on targeting and eliminating symptoms at the expense of the recognition of individual differences.

Q: What does that mean for the patient who’s in pain?

People need to accept that they have pain and focus on their quality of life. Some approaches reinforce in patients that the only way you can function is if you reduce your pain, as measured on a pain scale from zero to 10.

We focus on how to get a person back into their life by focusing on function instead of eliminating symptoms and pain. When I refer to functioning, I mean getting back into important areas of their life such as work, social activities and recreation. If a person is waiting for pain to go away, they are never going to get back into their life. When that happens, people get despondent, they get depressed.

Q: So how do you help people manage pain?

When a person is in chronic pain and it’s poorly managed, the nervous system can get out of whack. Their body behaves as if it’s under stress all the time, even when it’s not. Their muscles may be tense and their heart and breathing rates elevated, among other things.

With meditation and relaxation exercises, we are trying to teach people to learn how to relax their bodies and hopefully kick in a relaxation response.

If I have low-back pain, for example, during periods of stress, muscular tension is going to exacerbate the pain in my back. We focus on helping people to disengage from their symptoms.

By learning to relax in response to stress, muscular tension can be diminished and the experience of pain eased. This does not require a medication or a procedure, just insight and implementation of a relaxation skill.

Relaxation/meditation training is one component of a much broader treatment package. All aspects of our treatment — cognitive techniques for managing mood, anxiety and anger, physical therapy, occupational therapy — are all designed to settle the nervous system.

Q: Does insurance typically cover the program? 

Insurance companies may want to see patients complete more conservative treatment approaches before approving an interdisciplinary pain rehabilitation program like ours.

There are patients whose policies do not cover our billing codes. If we deem a patient as a good candidate, we will write letters saying they should be accepted.

There are a very select few who have paid out-of-pocket for our program. This is a significant minority, however. The program can cost up to $40,000 for someone with other complicated medical problems in addition to chronic pain.

There are studies that show these programs do save money over the long term in health care costs and reduced health care utilization.

If we are going to manage this chronic pain problem, we have to look at it for what it is: multifaceted. You cannot just treat the symptom, you have to treat the whole person.