Introducing the Patient Advocate

Doesn’t Everyone Do That?

The casual observer might be forgiven if he or she should view the role of a “patient advocate” in the practice of oncology—or any medical specialty—as redundant. After all, every healthcare professional might be considered a patient advocate, if that term is understood to mean “one who acts in the best interest of a given patient;” few doctors, nurses, physician assistants, and related personnel are not trained to work toward that end. However, in the contemporary healthcare environment, the challenges faced by the individual patient have never been more numerous or complex. The modern patient must choose among a bevy of available therapeutic options, navigate a Byzantine series of rules on reimbursement and insurance coverage while finding enough money to pay for treatment, and answer complicated legal and ethical questions. According to Cheree Briggs Cleghorn, founder of 1patientadvocate.com, “Every day, everywhere in America, half of caregivers and half of patients are uninformed about or unable to do what’s necessary to get the patient the right care, at the right time and in the right place.”

While members of the treatment team can certainly help with some of these issues, for obvious reasons their attention must remain mostly focused on clinical matters. In some cases—especially when a patient is diagnosed with cancer—it becomes necessary for someone outside of this circle to assist or speak for the patient in some capacity. This person, a patient advocate in a more formal sense, is becoming an increasingly important figure in the healthcare of the 21st century patient with cancer.

A patient advocate may come from any number of places. In some cases, a hospital or physician practice may employ an individual or several individuals whose entire profession comprises patient advocacy. Alternately, a patient may choose to hire a patient advocate through, for example, a local chapter of the American Cancer Society. A close relative or friend may also serve as patient advocate, especially when support on matters outside the financial and legal realms is required. A better understanding of the role of the patient advocate may be found in a more detailed exploration of the range of duties that he or she may be asked to perform; note that since “patient advocate” is not a clearly defined profession with a specific dedicated course of study, the advocate’s job description may vary considerably from area to area, or even from institution to institution. Some patient advocates may concentrate mostly on one or two of the areas described below while de-emphasizing others. If you decide to hire a patient advocate (hereinafter “PA”) for your practice, your first step should be to assess your own areas of need and decide what duties your new prospective employee will be expected to perform.

Managing Managed Care

Few developments have changed the way physicians practice medicine as dramatically as the advent of managed care in the United States. It is no longer possible for a physician to simply select the course of treatment he or she feels is most appropriate for a given patient. Compliance with ever-more complicated managed care rules and restrictions can frustrate the physician and confuse the patient. Theoretically speaking, it is the responsibility of the managed care organization (MCO) of a patient’s health plan—and not that of the physician—to educate patients on the intricate details of their coverage. However, author Sandra E.D. McGraw, JD, MBA, writing in Family Practice Management, notes that this responsibility is often neglected in the practical world. “Can you count on MCOs that may have tens of thousands or hundreds of thousands of enrollees to ensure that each of them fully understands all aspects of his or her health plan?” asks McGraw. “Well, no, you just can’t.”

Since most physicians are far too pressed for time because of managed care to learn everything about managed care, in many cases, a PA will be appointed to interact with MCOs and help ensure that patients receive the best possible care and doctors receive reimbursement consistently and promptly. Says McGraw, “hiring a patient advocate could help you to re-establish the role you expected to play in the healthcare system: the one in which you and your patients act together to determine the treatment plan that is best for each patient.”

In this context, a PA must learn all rules associated with the HMOs with which your practice interacts and develop relationships with the MCOs thereof. He or she should also work with you to identify referral physicians covered under each plan and determine how systems and policies specific to your office—phone triage, billing guidelines, e-mail consultations, and the like—are affected by HMO regulations. On a day-to-day basis, the PA will explain formulary restrictions to your patients and help them identify appropriate pharmacies, facilitate referrals to other healthcare providers (and be certain that providers to whom a patient is referred understand the MCO guidelines relevant to that patient), and—perhaps most importantly—serve as an all-purpose troubleshooter, identifying problems as they arise and working to fix them without physician intervention. Ideally, a PA hired to perform these duties should be hired as a full-time employee (so that he or she is available to handle phone calls and other matters at any moment), be experienced in the workings of the HMO system, and have exceptional communication and organizational skills.

A PA hired by or working for the patient may also represent the patient in dealings with MCOs, of course, and may be an even more fervent advocate for the needs of the patient if disagreements about treatment and/or coverage should arise. “When someone is diagnosed with cancer, arguing with an insurance company over treatments and payments is demoralizing, says Nancy Davenport-Ennis, founding executive director of the Patient Advocate Foundation (PAF). In the winter of 1998, the PAF was contacted by a woman named Joyce Trainer, who had been admitted to a Houston hospital with bowel cancer and undergone a series of surgeries that claimed her small bowel, appendix, and parts of her stomach and pancreas. Trainer, whose health had continued to deteriorate even after these procedures, wanted to contact a specialist at the nearby MD Anderson Cancer Center but had been rebuffed by her insurance carrier. “I didn’t have the first clue of what to do,” Trainer said. “I would have died. I was a long-term, high risk for an HMO.”

The PAF intervened immediately, lobbying Trainer’s insurance company to provide coverage and soliciting media attention for her cause. Almost immediately, she was moved to MD Cancer Center, where she received two weeks of treatment and was ultimately discharged, her weight back up to 81 pounds from a low of 69. (Read Joyce Trainer’s complete story)

Practical Matters

Depending upon the needs of the individual patient, a PA may also be called upon to handle any of dozens of other duties, quite apart from matters related to insurance coverage. PA involvement in the clinical realm generally involves assisting the patient in making key decisions about his or her own care. Specifically, a good PA will provide resources to help the patient at all three stages of the decision-making process:

1. Compiling the Information Needed to Make a Decision: A PA may help the patient research specific tests or treatments, investigate the possible genetic implications of his or her condition and possibly arrange for genetic counseling, determine whether ongoing clinical trials specific to the patient’s illness are currently accepting new enrollment and evaluate the risks and potential benefits associated with the investigational therapy, and the like. Above all, a PA should help each patient describe his or her own needs and develop—in conjunction with the patient’s doctor and the treatment team, of course—a practical goal for treatment (even if the goal is simply the relief of specific symptoms, such as pain).

2. Making the Decision: Patients may receive support from a PA when choosing an institution or other care provider, requesting and receiving a second opinion on diagnosis or treatment recommendations, and choosing among available therapeutic options (including complementary or alternative treatments if the patient wishes to attempt them). In particular, the PA is often responsible for making sure that the patient’s wishes are understood and respected by everyone involved in the treatment process. The PA may also help coordinate the schedules of patient and physician to ensure that treatment and other care is carried out in a timely fashion.

3. Dealing With the Results of the Decision: If a patient is inclined to downplay side effects or other negative results of treatment, the PA is often charged with communicating these problems to the physician and treatment team. The PA will also help the patient determine how his or her illness and associated therapy will affect work and will advocate aggressively for fairness in the workplace if it becomes necessary.

More generally, a PA will do whatever is required to help smooth the course of treatment outside the office or clinic. The American Cancer Society tells the story of Shadonna Jones, a five-year-old girl diagnosed with brain cancer in October 2002. Accompanied by her family, Jones spent several months at St. Jude Children’s Research Hospital in Tennessee, where she received radiation therapy for her condition before preparing to return to her native Shreveport, LA, to begin chemotherapy. However, a leaky roof in her home meant that Shadonna might be subjected to mildew and mold, potentially deadly health hazards given her situation. Catherine Credeur, a PA with the ACS, was contacted by Jones’ mother Candra, and—within a day—persuaded two members of the Home Builders’ Association of Shreveport-Bossier to fix the family’s roof and clean the accumulated mildew and mold, all free of charge.

Emotional Support and Beyond

Of course, sometimes what a patient needs most is simply a friendly face and sympathetic ear; someone who will listen to the patient’s complaints and offer encouragement and support. This, too, may be a job for a patient advocate—or perhaps, by the virtual equivalent of one. The website CancerPatientAdvocate.com was founded by Lynn Eib, who was hired in 1996 as a patient advocate by Dr. Marc Hirsh, the oncologist who had successfully treated her for metastatic colon cancer five years earlier. Unlike the PAs described above, Eib has never interacted with an MCO and spends little time poring over medical reference books or investigating clinical trials. Rather, she offers “emotional and spiritual support to cancer patients and their caregivers.”

According to Hirsh, “the diagnosis of cancer usually evokes thoughts of death and dying. It causes fear of suffering, of losing control, and of losing value as a person.” Eib’s role in his practice is to help patients address those concerns. “When a patient is upset emotionally, I feel a need to spend more time with that patient, but the patient’s concerns are often not really medical [in nature],” says Hirsh. Because he can now offer to let such patients speak with Eib, he continues, he has more time to spend dealing with clinical issues. “That’s usually what someone really wants anyway—someone to listen to them and feel their pain. When the patient advocate takes over the emotional/spiritual care, it frees me up to see the next person in the schedule.” The spiritual support that Hirsh and Eib offer is often religious in nature, but the general model—using a PA to provide the emotional assistance that the physician may be too rushed to offer—may be helpful even to physicians who wish to avoid incorporating religion into their practice. Meanwhile, Eib’s CancerPatientAdvocate.com offers a number of resources for PAs, patients, and healthcare professionals of all stripes, including information on starting a support group, a comprehensive listing of support groups already in operation around the country, and more.

1PatientAdvocate.com is another site that considers the role of PA in part as a provider of emotional support. It is designed specifically to be “a virtual community for women who want the best possible health outcomes for their family and friends.” The site dispenses a wide variety of information and resources designed to help patient advocates of any type function effectively (a small fee is charged for the membership-based site, but visitors can apply for a free trial membership to investigate the available information before joining). One of the most valuable resources to be found on 1patientadvocate.com is the “Community Room,” a flourishing series of chat rooms in which actual patient advocates—of every type and from every geographic region—share advice and experience. A full understanding of the myriad roles filled by PAs in the modern healthcare system can be found by perusing some of the exchanges found there.

Conclusion: To Hire or Not to Hire

Hiring a patient advocate will represent, at least at first, a new expense; something that many physicians may feel ill-equipped to absorb in the modern healthcare environment. However, for many practices, a PA—or more than one, depending upon the number of patients served by that practice—may represent a cost-efficient allocation of resources. In some cases, the presence of a PA might directly save your practice money every year, if that PA can help handle your dealings with MCOs. “Begin by checking your withholds or other incentive-based compensation to gauge the extent to which your practice is incurring the kinds of financial losses that a patient advocate could help to prevent,” says Sandra McGraw. “Next, assess how much risk you’ve assumed in your current arrangements with MCOs, and estimate your potential risk burden for the immediate to near future.”

Even if your managed care losses are not significant enough to outweigh the cost involved in hiring a patient advocate, there are other, slightly less directly measurable benefits. As Dr. Hirsh discovered when he hired Lynn Eib, having a PA in the office to address nonmedical concerns clears physician time to see more patients, which will ultimately result in more money coming into the practice (while, not incidentally, improving the patient’s overall satisfaction with care). Furthermore, since many patients may hire or otherwise obtain a patient advocate anyway, having one already on staff—one who is familiar with the particulars of your practice and the people who work in it—can make the process easier and more pleasant for all concerned. “In the long run,” maintains McGraw, “the benefits a patient advocate can bring to your practice and to your patients should more than make up for the initial increase in your overhead costs.”

The Patient Advocate Foundation

This organization, the leading player in the field of patient advocacy, is a “national nonprofit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, [and] job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys.” The organization’s well-designed home site dispenses news and information, most notably through the National Cancer Institute’s Cancer Advocates E-Newsletter, published once every two weeks and featuring updates on cancer advocacy issues in Washington and nationwide. A variety of publications targeted toward advocates and patients round out the content; titles include “Managed Care Answer Guide,” “Your Guide to the Appeals Process,” and “First My Illness, Now Job Discrimination: Steps to Resolution.”

The Patient Advocate Around the Nation

A quick look at the PA position as it exists at several hospitals and other institutions in the United States.

Roswell Park Cancer Institute (Buffalo, NY)

The Roswell Park Patient Advocacy staff “...ensure that patient rights are respected and that patients are satisfied with treatment... introduce parking and meal incentives, listen to questions/concerns and either resolve [them] or direct patient/family/significant other to [someone who can]... offer nondenominational religious service to family members and friends to celebrate the life of patients who have passed away... coordinate both internal and external sources available for communicating with patients who have special communication needs (non-English speaking and hearing impaired)... [and] offer individual assistance” for those wishing to complete an advance directive.

MIT Medical, Cambridge, MA

MIT Medical’s patient advocate program is designed to “...help patients resolve any issues that emerge in their interactions with MIT Medical... you do not need to identify yourself when contacting a patient advocate.” Billing concerns and questions about insurance coverage are handled not by the PA, but by other divisions within the institution.

University of Rochester Health System, Rochester, NY

University Health System patient advocates “...respond to patient concerns and work to resolve them... review UHS practices and procedures and recommend changes... familiarize patients with available choices regarding their care, and represent patients’ interests in UHS management meetings.”

Clearfield Hospital, Clearfield, PA

Clearfield Hospital patient advocates “...act as the liaison between Hospital personnel and the patient to answer nonmedical questions and concerns... handle complaints and serve as a central unit for patients and family members to discuss anxieties, ask direct questions, resolve problems, or simply as someone who will listen... track trends in the Hospital and identify problem areas so that corrective action can be taken... provide a more comfortable and warm environment in what sometimes appears to be a cold and sterile atmosphere.”

Office of the Patient Advocate, California

The Office of the Patient Advocate “...is an independent office under the Business, Transportation, and Housing Agency... informs consumers about their HMO rights and responsibilities and helps assure the highest level of customer service at the Department of Managed Health Care’s HMO Help Center... develops educational and informational guides [about HMO] for consumers that explain consumer rights and responsibilities... compiles an annual Report Card [accessible through this site] on the state’s HMOs to help consumers make better choices.”

Children’s Mercy Hospitals and Clinics, Kansas City, MO

Patient advocates at the Children’s Mercy Hospitals and Clinics “...serve as liaisons between families and the hospital staff... serve as a barometer of the hospital’s goals of continually meeting and exceeding the needs and expectations of patients and families.”