{"id":6082,"date":"2020-06-11T07:30:39","date_gmt":"2020-06-11T11:30:39","guid":{"rendered":"http:\/\/www.silvercentury.org\/?p=6082"},"modified":"2020-06-11T16:35:35","modified_gmt":"2020-06-11T20:35:35","slug":"patient-advocates-pathfinders-in-the-complex-world-of-medicine","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2020\/06\/patient-advocates-pathfinders-in-the-complex-world-of-medicine\/","title":{"rendered":"Patient Advocates: Pathfinders in the Complex World of Medicine"},"content":{"rendered":"

When a life-threatening staph infection sent Dominick Buttiglieri, 64, to the hospital, his situation quickly worsened\u2014and his wife, Deborah, soon felt overwhelmed. <\/span><\/p>\n

\u201cHis organs were shutting down, and the doctors weren\u2019t giving us much hope,\u201d she said. Dominick was in pain and barely conscious; Deborah was beside herself with worry. <\/span><\/p>\n

The Buttiglieris\u2019 son lives in another city and couldn\u2019t be there to help. Instead, he searched online and hired AnnMarie McIlwain, a patient advocate, who turned up at the hospital to assist. Immediately, the family felt more control over the situation. <\/span><\/p>\n

\u201cAnnMarie spoke to the doctors, gave me better insight into what was going on and made suggestions without telling us what to do,\u201d Deborah Buttiglieri said. \u201cI\u2019m not an in-your-face person. I didn\u2019t know what questions to ask to get the information I wanted.\u201d <\/span><\/p>\n

As Dominick started to recover, McIlwain helped the family arrange for his transfer to a good rehab facility. Now, he\u2019s home and on the mend. <\/span><\/p>\n

We have the most confusing health care system in the world. If you\u2019re feeling overwhelmed, it\u2019s not you.<\/b><\/p>\n

\u2014Caitlin Donovan<\/b><\/p><\/blockquote>\n

More and more patients and their families are following the same path as the Buttiglieris: enlisting the help of a patient advocate to navigate the complexities of the medical system. <\/span><\/p>\n

\u201cA patient advocate\u2019s role is to make sure the medical team has the right information, to make certain the client is getting the proper attention, and translating for the family what is going on,\u201d McIlwain said. \u201cThe hospital environment is stressful; patients are usually in pain, sedated and weak, and their loved ones are understandably emotional. It\u2019s too much to advocate for themselves.\u201d<\/span><\/p>\n

Patient advocates support people undergoing medical treatment, with a focus on getting the best possible care while keeping costs as manageable as possible. Patient advocates may also use other names\u2014health advocates, patient or health navigators, case or care managers or doulas. They work one-on-one with patients as independent consultants, paid by the patients or their families. Some advocates come with a medical or social work background; others learn on the job. Many join the field after assisting a family member. <\/span><\/p>\n

\u201cPatients should only have to concentrate on getting better,\u201d said Caitlin Donovan <\/span>of the Patient Advocate Foundation, a nonprofit that provides advocacy and patient education. \u201cWe have the most confusing health care system in the world. If you\u2019re feeling overwhelmed, it\u2019s not you.\u201d <\/span><\/p>\n

Multiple Roles<\/b><\/p>\n

Patients who are considering enlisting the help of a patient advocate should first consider: What kind of help is needed? The role of a patient advocate can vary broadly, depending on the patient\u2019s needs and the patient advocate\u2019s area of expertise. Some patient advocates have medical training and assist with navigating medical care, sometimes even specializing in areas like oncology. Some focus on billing issues. Others may assist with more administrative tasks: scheduling medical appointments, helping people sign up for Social Security or Medicare, organizing medical information or hiring a caregiver. Some work in teams to provide a range of skills and expertise.<\/span><\/p>\n

Patient advocates often fill the communication gaps that can occur with older adults who have multiple medical issues. Deirdra Kindred, an RN and patient advocate, was hired by a family to assist their 92-year-old mother, who was losing weight and refusing to leave her room in the upscale, assisted living facility where she lived. <\/span><\/p>\n

\u201cShe was suffering from diarrhea and nausea and did not want to leave the room because she was afraid she\u2019d throw up or have an accident,\u201d Kindred said. She learned that the woman was taking 17 medications, some of which had been prescribed for years. She had several specialists but no one assessing her overall medicine intake. Working with the woman\u2019s doctors, Kindred helped her wean to nine medications, and the diarrhea and nausea disappeared. Soon the woman was leaving her apartment, eating regularly and enjoying life again.<\/span><\/p>\n

A patient advocate understands the system, knows how to ask the right questions and can lessen the burden for patients and their families. <\/b><\/p><\/blockquote>\n

Some patient advocates assist in navigating insurance and correcting billing errors. Experts estimate that as many as 80 percent of all medical bills contain errors. Yet the process for correcting those errors is often labyrinthine. If there\u2019s a snag in insurance processing, a hospital typically will continue to bill the patient and even threaten to send the bill to a collection agency. Getting the right people on the phone who can resolve the problem\u2014either at the hospital and\/or the insurance company\u2014can prove difficult and time-consuming. Most patients don\u2019t have the knowledge or the energy to tackle the challenge. A patient advocate who works in this area, however, understands the system, knows how to ask the right questions and relieves some of the burden for stressed patients and their families.<\/span><\/p>\n

\u201cWhen our case managers help a patient, it takes an average of 22 phone calls to resolve a billing issue,\u201d Donovan said. \u201cHaving someone who knows how to talk to billing offices and to insurers is incredibly helpful.\u201d <\/span><\/p>\n

Patient advocates also help navigate the vastness of the medical system. Barbara Abruzzo, a registered nurse, helps clients obtain second opinions, sorts out their options and manages complex care. She also may assist families in researching which doctors, hospitals or research facilities are best, given the patient\u2019s condition and situation. <\/span><\/p>\n

Abruzzo has organized conference calls that brought together family members, hospital administrators, surgeons, physicians and nurses at once to plan a patient\u2019s care when it required the expertise of several different specialists. For that kind of complex care navigation, she believes, clients should seek a patient advocate with medical training. <\/span><\/p>\n

\u201cDoctors see that I know what I\u2019m doing and that I mean business,\u201d she said. <\/span><\/p>\n

In the Hospital\u2014and Out <\/b><\/p>\n

Some patient advocates offer hospital accompaniment\u2014visiting or even staying at the client\u2019s bedside when family members can\u2019t be there or feel they can\u2019t advocate effectively in a complex situation. <\/span><\/p>\n

\u201cToo many medical professionals are overworked and overwhelmed,\u201d said Lisa Berry, a patient advocate. \u201cFor years, doctors have told me off the record that hospitals are dangerous places, because they cannot do their jobs. It\u2019s very easy for mistakes to be made.\u201d <\/span><\/p>\n

No one should go into a hospital without someone there to advocate for them, whether it\u2019s a professional advocate or a family member, said Michael Weisburg, MD, a gastroenterologist. Most primary care physicians no longer have hospital privileges to attend to their patients when they\u2019re hospitalized. Instead, patients\u2019 care is managed by hospitalists\u2014physicians who coordinate their treatment until they go home. Hospitalists work only in hospitals, which employ them, and the care they provide is dictated by each institution\u2019s guidelines.   <\/span><\/p>\n

\u201cThe hospitalist is someone who has never seen you before, knows nothing about you and doesn\u2019t have the time to learn about you,\u201d Weisburg said. \u201cAnd that doctor in charge may change every couple of days.\u201d<\/span><\/p>\n

A patient advocate can help as patients leave the hospital\u2014a critical juncture when things can easily go wrong. <\/b><\/p><\/blockquote>\n

Weisberg experienced this dilemma himself during his 91-year-old father\u2019s hospitalization for a broken hip. While visiting, Weisburg saw that his father was agitated and trying to get out of bed. Weisberg suspected a problem with his catheter and alerted a nurse. However, the hospitalist on duty was occupied by another emergency and simply prescribed a sedative, which only made the patient more agitated. Still busy with the emergency, the hospitalist ordered the nurse to restrain Weisberg\u2019s father. <\/span><\/p>\n

Because restraints are dangerous (they can cause patients to aspirate), Weisberg called another hospitalist who had cared for his father earlier and was off duty. That hospitalist ordered nurses to check on the catheter, which, as Weisberg suspected, was not functioning properly. Another catheter was inserted and quickly filled with two bags of urine. Weisberg\u2019s father immediately felt much better and fell into a deep sleep. <\/span><\/p>\n

\u201cIf I hadn\u2019t been there, he could\u2019ve been put into restraints, aspirated and died,\u201d Weisberg said.  <\/span><\/p>\n

Another task of patient advocates is to assist clients as they transition out of the hospital for recovery at home, at rehab or at another facility\u2014a critical juncture when things can easily go wrong. Often, hospitals will discharge patients who need ongoing medical attention, expecting family members to pick up the responsibility at home. Patients who don\u2019t have family or friends willing or able to help may be left to fend for themselves. <\/span><\/p>\n

Patients do have legal rights in this kind of situation, Berry noted, but most don\u2019t know that. She works hard to make sure her clients aren\u2019t discharged prematurely, which often occurs with Medicaid coverage or similar programs that pay minimal reimbursements to hospitals. In one case, a hospital tried to discharge one of her pro bono clients too early; the social worker on duty told Berry there was no option to protest. Berry knew better and insisted on an emergency hearing with an administrative law judge. The patient stayed. <\/span><\/p>\n

Finding a Patient Advocate<\/b><\/p>\n

The Alliance of Professional Health Advocates offers a <\/span>complete list of services<\/span><\/a> that patient advocates provide, as well as AdvoConnection, <\/span>a searchable directory<\/a><\/span> of patient advocates. While users may search by zip code, a patient advocate doesn\u2019t necessarily need to be local. Many advocates can assist remotely, depending on the situation. The Patient Advocate Foundation, a nonprofit, offers a <\/span>range of services<\/span><\/a>, including trained volunteers who can assist patients with billing and getting access to care; much of their work is done remotely. <\/span><\/p>\n

Keep in mind that independent advocates differentiate themselves from nurse navigators or patient advocates hired by hospitals or insurers, who don\u2019t ultimately answer to the patient.<\/span><\/p>\n

Another good place to start is with nonprofit groups that support people with specific diseases or conditions. These organizations may offer referrals to patient advocates, including some who are volunteers. The American Cancer Society, for example, can connect patients with advocates in some areas of the country. <\/span><\/p>\n

When looking to hire a patient advocate to help navigate medical care, talk to at least three candidates by phone, Berry said. (Most will do a preliminary consultation at no cost; ask first.) To get a good feel for whether someone will have the expertise to address particular concerns, provide a clear description of the patient\u2019s issues and needs. <\/span><\/p>\n

Family as Advocates<\/b><\/p>\n

Family members can be effective patient advocates, especially if they\u2019re quick studies and have the time to devote to the task. Bruce Carr found himself in that role in early 2019 when his sister, Joan, 72, was hospitalized with a severe infection that was complicated by underlying conditions. Carr traveled from his home in Ohio to be near her in Dallas. Quickly, the task became his full-time job. <\/span><\/p>\n

\u201cI dropped everything,\u201d said Carr, who is a turnaround and bankruptcy consultant. \u201cThankfully, I was between gigs and in the financial position to take the time off.\u201d  <\/span><\/p>\n

He spent his days talking to her doctors and helping Joan make tough decisions; he devoted his evenings to reading medical literature and insurance information. Even though his sister was receiving world-class care, Carr said, she needed someone to advocate for her. <\/span><\/p>\n

Carr\u2019s advice: keep a journal and write everything down. <\/span><\/p>\n

\u201cSo much comes at you so fast, you can\u2019t remember if you don\u2019t write it down,\u201d he said.<\/span><\/p>\n

Eventually, he made decisions when she was unable to do so herself. Joan passed away in September 2019; without his presence, Carr believes, she would have died six months earlier. <\/span><\/p>\n

Family members can find resources online to assist in their advocacy efforts. The National Patient Advocate Foundation offers <\/span>tips for communicating<\/span><\/a> with health care providers. Another nonprofit, Zaggo, offers <\/span>a variety of resources <\/a><\/span>including a free, downloadable chart for tracking treatments and medications. <\/span><\/p>\n

Not everyone, of course, has a family member like Carr available and able to focus on a loved one\u2019s care; professional patient advocates can fill that gap. Plus, disagreements can arise in the family over the best course of action for a family member\u2019s medical care, especially if the patient is unable to make decisions herself (or himself). In those situations, a professional patient advocate can serve as a neutral third party, someone who can objectively weigh available treatment options and help families better resolve disagreements. <\/span><\/p>\n

Whether it\u2019s a family member or a professional, Weisberg says, what\u2019s most important is to have someone in your corner when you\u2019re sick. <\/span><\/p>\n

\u201cThere\u2019s got to be someone\u2014a parent, a spouse, a child, someone you pay\u2014who has your best interests at heart and can stand up for you,\u201d he said. <\/span><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

When a life-threatening staph infection sent Dominick Buttiglieri, 64, to the hospital, his situation quickly worsened\u2014and his wife, Deborah, soon felt overwhelmed.  \u201cHis organs were shutting down, and the doctors weren\u2019t giving us much hope,\u201d she said. Dominick was in…<\/span><\/p>\n

Read more Patient Advocates: Pathfinders in the Complex World of Medicine<\/span> ›<\/span><\/a><\/div>\n

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