​Advance directives play a key role in reducing hospitalizations that could do more harm than good, but reluctance on the part of providers, families, and residents to discuss them continues to be a roadblock to better end-of-life care.

John Bolduc, a veteran long term care provider, recalls the time an advance directive did exactly what it was supposed to do.

The executive director of Odd Fellows’ and Rebekahs’ Home of Maine, a nonprofit residential care and nursing center in Auburn, Maine, had gone into the room of a recently deceased resident to extend his condolences to the family. The resident had been failing for some time, but had the foresight to craft his advance directive at a time when he still had his mental faculties.

His family elected to follow the wishes of the advance directive “and not opt for heroic measures, which could have extended the resident’s life, and their suffering,” Bolduc says.

When he got back to his office after his discussion with the family, the resident’s son came in to thank him and his staff for the wonderful care they had given his father. Bolduc spoke highly of the resident and told his son how fortunate his father was to have such a devoted family that visited as often as they did, and showed so much support for the center’s staff.

The son asked Bolduc if they had taken the right course of treatment for his father.

“I was very touched,” Bolduc says. “I knew he meant he felt guilt about refusing the life-saving measures available. I said to him, ‘It wasn’t your decision, it was your father’s; he didn’t want to put that on you.’ The gentleman says, ‘I know, thank you.’ He shook my hand and said thank you again as he left. That moment will always be with me.”

Whether it’s a living will or an order to not resuscitate, advance directives provide key insights into people’s final wishes about their fates, in the event something catastrophic takes place and they’re no longer able to speak for themselves. Despite the vital role it plays and national efforts by nonprofit organizations to enhance its importance, not everyone takes advantage of the advance directive as John Bolduc’s patient did.

Less than a third of the U.S. population has such a document. As some health care observers claim, not knowing what a person wanted for their care often leads to angst and confusion among family members and, at times, has financial repercussions for the patients and the centers that care for them.

There’s also a general reluctance among health care providers, families, and patients alike to discuss the painful issue. A legal document that tells health care providers that they should or shouldn’t resuscitate, or whether to take heroic measures to save a loved one’s life, is a difficult subject for families to come to terms with.

The advance directive is a checkmark of sorts: oftentimes the only resource a center has to move forward with a person’s care plan. As Ruth Tappen, EdD, professor and Christine E. Lynn Eminent Scholar at the Florida Atlantic University College of Nursing, observes, the conversation piece that accompanies these directives is often the most challenging part of all.

Few people want to have a discussion about end-of-life care, but it’s a necessary one, says Tappen, who led a team of health care professionals to develop the Decision Guide, Go to the Hospital or Stay Here?, a document that educates consumers about the alternatives to hospitalization skilled nursing centers can offer to patients.

Especially among patients with Alzheimer’s disease or other dementias, getting papers in order is strongly recommended, Tappen says. “This way, you can let people know what you want when you can articulate it. There will come a day when it will be hard to get your feelings across.” And many times, “we look to the families to interpret and explain and speak for the resident. At some point, facilities have no choice, but sometimes they need more perspective” on what the patient wants.

Such perspective may be difficult to attain. Families and residents aren’t always on the same page about the advance directive. “They’re not necessarily arguing about it, but there’s a different philosophy” among these parties sometimes, she says.

It’s not a comfortable topic. Health care professionals aren’t always keen on bringing it up. Yet, the residents of long term care centers are counting on experts within the field to take responsibility for these conversations, Tappen says. As others in the profession observe, it takes a village to ensure that the advance directive does what it’s supposed to do. It involves a dedicated, coordinated effort between all caregivers, the family, and the patient.

In many respects it’s an exciting time for the advance directives movement. For the past decade, Nathan Kottkamp, a partner of health law at McGuireWoods in Richmond, Va., has spearheaded National Healthcare Decisions Day (NHDD), which seeks to educate providers and consumers about the importance of advance care planning.

Just recently, NHDD acquired some new partners: the Boston-based Conversation Project, which collaborates with the not-for-profit Institute for Healthcare Improvement to improve the movement’s visibility and get more providers involved.

Through this new collaboration, “I’m looking forward to seeing how we grow in our tenth year,” Kottkamp says.

NHDD to date has attracted 3 million people to its events and has the support of more than 110 national and 1,600 state and local organizations. But when Kottkamp is asked if more people are investing in advance directives, his answer is less than encouraging. “The numbers continue to hover around 25 percent of the population” in the United States, he says. At one of the facilities he works with, prevalence is even lower, at 20 percent.

A study conducted by the Conversation Project in 2012 found that just 30 percent of individuals actually take the step of discussing end-of-life care planning, even though 90 percent acknowledge it’s important to talk about their wishes.

Not all residents in long term care facilities have them, either. At least among nursing center residents, just over 55 percent had an advance directive in 2014, according to third-quarter data from the Centers for the Medicare & Medicaid Services (CMS) Certification and Survey Provider Enhanced Reports (CASPER) database, which includes aggregated information about residents of skilled nursing centers.

It’s clear that while some progress has been made, it’s not enough.

Communication breakdowns along the care continuum are leading to problems long before admission to a long term care center, Kottkamp says. “There are many missed opportunities along the way.” It often starts in independent living communities. New residents are mostly concerned about the golf course and other amenities. They’re still relatively healthy and don’t want to think about end-of-life planning, he says.

Issues may come up with the advance directive either when it doesn’t exist—or can’t be found. Kottkamp says he routinely hears from hospital clients about the absence of an advance directive when they get an admissions transfer from an assisted living or nursing center.

In cases where an individual is no longer able to speak for him- or herself and the authorized decision maker is unknown, this can lead to family strife or, quite possibly, astronomical medical bills.

If a spouse can speak on behalf of a patient, that’s more cut and dried. Complications arise when the patient is a widow, has multiple children—and there’s no advance directive. The result is three or four children living in different parts of the country with different religious and political beliefs are suddenly cast as the decision makers—and may or may not agree on their mother’s end-of-life care. “It’s a major opportunity that’s lost,” Kottkamp says.

The guardianship process, where a court appoints someone to speak on a patient’s behalf in the event there’s no advance directive, is usually a long and costly process—not just for the patient, but for taxpayers at large, he says.

Kottkamp recalls one instance where a woman in her thirties was admitted to the hospital with abdominal pain. She was divorced with two minor children and living with a friend of hers. There was no advance directive, and when the woman went into a coma due to rare complications from the surgery, her friend couldn’t speak on her behalf, even though she was the most appropriate person to serve as her agent.

The legal fees associated with paying two separate law firms for appointing this woman as guardian, and for court-ordered treatment of the patient, amounted to $75,000, Kottkamp says. This doesn’t even include the hours physicians, social workers, and other providers invested to resolve this case. There were probably tens of thousands of dollars in lost time expenses—all because there wasn’t an advance directive, he says.

Lost opportunities can take place within the health care facilities themselves.

Hospitals, skilled nursing centers, and hospice and home health agencies are required under Medicare and Medicaid’s conditions of participation to ask patients about advance directives upon admission. But the way some facilities go about asking patients “is almost meaningless,” due to the rushed process of checking patients into a hospital, Kottkamp says.

In many facilities, admission and other registration personnel are evaluated based on through-put. The faster the patient is checked in, the better they’re scored on performance reviews.

For these facilities, it delays the registration process if a patient has an advance directive and wants to go through a big checklist and have a meaningful conversation about end-of-life care, he says.

Patients are often just as eager to clear through registration as quickly as they can and speak to a doctor. Often the center doesn’t follow up with the patient about an advance directive, and the issue falls through the cracks.

There’s also hesitancy to discuss advance directives when the focus is on healthy living. Facilities “worry that this will be a downer for residents,” Kottkamp says. The problem is these very same patients are looking for guidance from providers because they’re often confused about what to do.

These conversations can be difficult, however, if the interested parties don’t understand what’s in the document.

The language is often very technical, “and it’s a challenge to get patients and families to understand what it all means,” says Crystal Brown, DNS, director of nursing with Bayberry Commons, a skilled nursing center in Pascoag, R.I., that specializes in rehabilitation, long term care, and Alzheimer’s disease care.

James Gonzalez, MPH, FACHE, LNHA, president and chief executive officer of Broadway House for Continuing Care, in Newark, N.J., knows what it’s like to deal with patients who struggle to understand these documents and, at times, have no family structure to lean on. As the only HIV-AIDs specialty care center in the state, Gonzalez frequently sees residents who are in the last stages of their lives.

“Many have dementia and can’t process what you’re telling them,” he says. They might have other comorbidities like cancer and drug addiction and behavioral health concerns. While some have family support, others are ostracized from their families, possibly resulting from the stigma of having HIV, or the patient’s history with drugs or a crime record.

This is where it’s the center’s job to introduce the patient to a caring environment: to offer pain management and comfort care, while helping them with tasks such as the advance directive, Gonzalez
says.

Broadway House’s approach is to introduce the advance directive in a simplistic, step-by-step manner.

“You might have to repeat what you say to these patients multiple times,” Gonzalez says. Eventually, they start to develop a relationship with the providers—the doctors, nurses, and addiction counselors that are trying to help them. “They start understanding that we’re trying to make the end of their life as comfortable as we possibly can.”

If the patient has no friends or family to rely on, “they become part of our family,” Gonzalez says. In these instances, Broadway House will seek guardianship for the resident and assist them with any legal issues.

Some health care observers suggest that advance directives could play a role in reducing the penalties associated with readmissions under new quality initiatives in the Accountable Care Act (ACA), while making better-informed decisions about patient care.

An ACA provision that penalizes hospitals with high rates of 30-day readmissions has a trickle-down effect on long term care centers, says Susan Cornell, administrator of Bayberry Commons. CMS’ Hospital Readmissions Reduction Program reduces pay for certain hospitals if too many Medicare fee-for-service patients with conditions such as heart failure or heart attack, chronic obstructive pulmonary disease, pneumonia, or hip/knee replacements return within 30 days of discharge.

Starting in 2018, penalties will also apply to skilled nursing facilities under the federal value-based purchasing program. Cornell says CMS is tracking the data that it will use to assess these penalties and is still working out the details. “Nursing homes will have 2 percent taken initially and then be refunded based on their performance on readmissions to the hospital,” Cornell says.

In the meantime, “we are indirectly getting penalized due to a decrease in referrals from hospitals and being left out of preferred provider groups or accountable care organizations [ACOs] if our rates are too high” for sending Medicare fee-for-service residents back to the hospital, she says.

This could ultimately affect her center’s financial bottom line. Although it serves only a small percentage of Medicare patients—most of Bayberry’s inhabitants are covered by Medicaid or private insurance—Medicare rehabilitation patients are a positive revenue source, she says. And these are the patients that CMS is tracking in its readmissions program.

High readmission rates also have an effect on a center’s public ratings. CMS’ Five-Star Quality Rating program for skilled nursing centers tracks 30-day readmission rates, and all of this information gets posted on its website. If a center has below three stars, it gets fewer referrals, Cornell says. Managed care looks at these ratings, and if a center’s rating is too low, the hospital might not choose to have it in its provider network.

This is also true of some ACOs that are only choosing to do business with four- and five-star facilities that
have low rehospitalization rates.

Not only that, families are looking at these ratings to decide where to send their loved ones, says Brown of Bayberry Commons. Taking a second look at the advance directive could help to avoid multiple rehospitalizations, she says.

With so many quality measures ensnaring hospitals for providing excess care, hospitals and nursing centers need to develop more effective dialogue with one another, Gonzalez says. “They all have to be on the same page when it comes to advance directives. This means sitting down at the same table and mapping out a strategy.” Until this communication problem is resolved, patients will continue to bounce back and forth to the hospital. “That doesn’t help anyone financially, and it’s bad for the patient,” he says.

Even before the ACA and these reporting measures existed, many elderly residents went in and out of the hospital without showing signs of improvement, which meant that a proper discussion on advance care planning needed to take place, says David Gifford, MD, senior vice president for quality and regulatory affairs with the American Health Care Association.

If public reporting “is what it took to trigger this dialogue, that’s great. But it should have taken place a long time ago,” he says.

That said, financial penalties should not ultimately be driving these conversations, Gifford adds. “If a provider is pressuring a patient to not go to hospital to avoid a payment penalty or look bad on a quality measure, that’s unethical. On the flip side, not having conversations about advance directives and finding out what the patient’s wishes are, that’s also inappropriate and unethical.”

Sandy Morrison, social worker and admissions coordinator for the Odd Fellows’ & Rebekahs’ Home of Maine, says her center’s staff has not experienced any reimbursement concerns with respect to hospitals and frequent readmissions.

“The concern that I see occurring most often is that the resident’s situation changes, and they do not update their advance directive,” she says. The document doesn’t always reflect current wishes or what’s appropriate for the resident.

Advance directives are not set in stone, she says. They need to be reviewed on an ongoing basis, “when the resident is cognitively able to,” Morrison says. “Upon admission, part of my duty is to educate people about the advance directive and help them implement them if they so choose. Each resident/family’s needs/wishes are different and so is the approach for each person.”

Ultimately, money is not at the heart of this issue, Cornell emphasizes. Having the appropriate advance directive in place “benefits the resident, family, and staff. It creates a culture of true caring. End-of-life decisions so often are intertwined within the framework of the family and past relationships and issues. Not only is it about giving the patient optimal care, it is about person-centered care, involving the entire family,” she says.

In cases where a full code patient (those in need of life-saving measures such as intubation or resuscitation) is admitted to a center, it’s important to talk to the family so that they can get a full picture and prognosis, Cornell says. The difficult part is separating what the family wants and what the patient wants.

“Residents may not want heroic things done to them, but they do it because the family isn’t ready to let go yet,” Cornell says. As part of its revised advance planning program, Bayberry has assembled a health care team of providers that offer spiritual and religious guidance, massage, art and music therapy, and education and guidance about palliative care.

“We realized that we needed to look at advance directives in a different way…to make sure that they were in place and conducted in a timely manner.” Advance directives are often done onsite, most ideally when the patient is still of sound mind and body. If they’re unable to fill it out, then staff go over the document and the options available with the family.

If there’s a reluctance to change the terms of an advance directive, a nurse will explain things to the patient and the family from a medical standpoint, with other doctors and caregivers standing by to offer assistance.

“If we strongly believe the advance directive doesn’t match the prognosis, we have that support of the whole team to work with family and residents to come up with something more realistic,” Cornell says.

This approach worked successfully with a resident who upon admission was still alert and able to walk, but took a turn for the worse shortly afterward.

“She had cancer, and the family had a hard time accepting the prognosis,” Brown says. Working with the palliative care nurse, Brown was able to encourage the family to change the advance directive and give the patient comfort care instead of sending her back to the hospital for drastic rehabilitative measures.

It’s a difficult thing for these families to do, she concedes. “They don’t want to think they’re giving up on the family member.”

A little foresight in planning goes a long way. Jay Galeski, an internist with Virginia Physicians in Richmond, Va., says the majority of his patients who bring advance directives to the hospital don’t have any problems getting their wishes honored. That’s because “these care plans were created in the calm and unhurried atmosphere of an office visit, not in the ICU or emergency room setting, where many take place.”

This approach worked for the family of one of his patients who experienced a cerebral hemorrhage. “The wife and son were able to feel comfortable that the patient’s health care wishes for end-of-life care were honored,” Galeski says, “and there wasn’t any guilt when he was taken off of life support.”