There is help. Patient advocates—both free services and paid companies—help patients and their families with treatment options, emotional support, public programs and insurance issues.
For advocates, illnesses generally fall into two categories: life-threatening diseases such as cancer and long-term conditions like Alzheimer’s and mental illness. The categories represent different needs for patients and their families, such as Kay Skinner, who, without Ikor, a professional advocate company, would not have been able to care for her sister-in-law, who suffers from psychiatric disorders.
But, first, the story of two people who did not have patient advocates.
Joe and Christine Bove married in 2004 , 40 years after they graduated from Conrad High School in Wilmington. They weren’t high school sweethearts, just friends. But after Christine was divorced from her first husband, a friend reintroduced her to Joe. He immediately remembered her as “the cheerleader with blonde hair.” It was love at 101st sight.
But before they were married, Christine was diagnosed with uterine cancer. In 2003, Christine, then 49, was told by her gynecologist that menopause was to blame for her heavy bleeding and pain. The doctor later changed the diagnosis to uterine cancer and told Christine she needed a hysterectomy. She had the procedure.
Yet the cancer remained. Doctors told Christine radiation was the correct treatment, and it shrunk the tumor. But two years later, the tumor returned. In 2005 doctors gave Christine more radiation and drugs to regulate her hormones. “We asked the doctors if there was another treatment,” Joe says. “What about chemotherapy? Or anything else? They told us that radiation was the only option.”
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Though there are no patient advocates at Christiana Care, there is a staff of 30 social workers who help patients with emotional and psychological support, health insurance, and Medicaid and Medicare issues, says Linda Brittingham, corporate director of social work for Christiana Care. Social workers also help patients find nursing homes, care facilities and home health care, and they link them with community services and support groups.
“A social worker would be called in if you seem to be in distress,” Brittingham says. “We would talk to the patient about options with insurance. ‘Insurance says you can get a second opinion. Have you thought about that?’ Some will say, ‘I want my doctor, and I trust my doctor.’”
That’s what Christine Bove said. She stayed with her doctor.
In 2007 the Boves got bad news. Christine’s tumor had returned—and it had grown. Then they got worse news. Joe had prostate cancer.
The doctor told Joe that he had one option: surgery. “I said to the doctor, ‘What about radiation?’ and he said, ‘No. Surgery is the only choice,’” Joe says.
So Joe went home, picked up the phone, and called Fox Chase Cancer Center in Philadelphia. There, he was put in touch with Dr. Mark Buyyounouski, a radiation oncologist who told Joe about Calypso, a new treatment involving precision radiation. Surgery was not required. Joe elected Calypso. He began what would be 39 treatments. Joe insisted Christine also go to Fox Chase. She finally agreed.
Calypso treatments cured Joe’s prostate cancer, but it was too late for Christine. The Fox Chase doctors told her the cancer was terminal. She died on May 3, 2009.
“I should have made Chris go to Fox Chase right away,” Joe says. “We should have gotten second opinions, especially about the radiation. There had to be other treatment options.”
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These are the kind of people that the American Cancer Society helps. Theresa M. Young is executive director of the society’s Cancer Resource Network Division Service Center, South Atlantic Division. Young oversees the society’s free patient advocate program.
“Our division service center is for patients, caregivers, and healthcare providers,” Young says.
After an assessment, patients with elevated needs are assigned to a licensed clinical social worker. “The LCSW does a psycho-social assessment of the patient,” Young says. “What issues are they dealing with? Loss of income? Lack of insurance? Finding community resources? The emotional impact? The LCSW helps the patient take care of immediate concerns so that the patient can focus on getting healthy.”
What about treatment options? “We don’t provide clinical, medical advice,” Young says. “We give information and resources to empower patients to make their own decisions.”
Patients with life-threatening diseases other than cancer can turn to the Patient Advocate Foundation. Founded in 1996, the foundation provides free services to patients—48,000 of them in 2008—who suffer from a wide variety of illnesses. “We are mediators between the patient and the care,” says Erin Moaratty, chief special projects officer for the foundation
“We negotiate preauthorizations, insurance appeals, broker insurance for continuing coverage, and connect patients with social service agencies. If patients are dealing with employment issues or job discrimination because of an illness, we mediate with the employer on the patient’s behalf.”
In the medical realm, Patient Advocate Foundation gets patients access to pharmaceuticals, treatments and medical devices. Through a partnership with the Centers For Disease Control, the foundation offers patients options for clinical trials.
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Patients initiate service by calling Patient Advocate Foundation or going online to answer questions that are reviewed by a medical intake specialist. Within 72 hours, patients are contacted by a case manager who works with patients to find answers to their problems.
There aren’t always resolutions. Patients who suffer from life-threatening illnesses often succumb to them. Then there are patients who live with illnesses that spare their bodies but steal their minds.
The Alzheimer’s Association and National Association for Mental Illness-Delaware provide resources and support for patients and families.
But who gives daily care? Who feeds and bathes patients? Who pays their bills? The answer, more and more, is to enlist the services of paid patient advocates who help the patient and the family. Such is the case with Kay Skinner, whose 86-year-old sister-in-law, Pearl Burns, got a double diagnosis of mental illness and dementia.
In 2004, after the death of her husband, Burns moved to Ware Presbyterian Village, a continuing care retirement community in Oxford, Pennsylvania, to be with her brother, William, and his wife, Kay. “We knew that Rose had ‘issues,’” Kay Skinner says. “But, we didn’t know the extent of them until she moved into Ware.”
It was Burns’ second suicide attempt that led Skinner to seek the services of Ikor. The first suicide attempt had come almost immediately after Burns moved into her cottage at Ware. Burns, then 81, was moved to the psychiatric unit of Brandywine Hospital in Chester County, where she stayed for two weeks. “She was disoriented and confused,” Skinner says, “but the doctors said she was stable enough to return to Ware.”
She wasn’t. Two weeks after Burns’ release, Skinner found her in the bathtub with her wrists slit.
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One day before that, Skinner’s husband had suffered a stroke. William Skinner was in rehabilitation for 40 days while Burns was in the psychiatric unit of Brandywine Hospital, then Montgomery Hospital. Kay Skinner was emotionally and physically overwhelmed. “But that was just the beginning,” she says.
Burns’ contract at Ware was voided because she was a proven danger to herself. Burns was, essentially, homeless.
“Montgomery Hospital wouldn’t release Pearl until I found a place for her to live,” Skinner says. But many senior facilities will not accept patients with psychiatric disorders. “I went to the independent living nurse at Ware and said, ‘I need help.’ The nurse told me that I need a patient advocate. She suggested Ikor.”
Remembering her first call to Ikor, Skinner has tears in her voice. “I said, ‘My name is Kay Skinner. Will you please help me?’”
Ten years ago, a call like that one inspired Patricia Maisano, a registered nurse working as a disability case manager, to create Ikor. “A woman called me, crying,” says Maisano, CEO and president of Ikor. “She needed help for her mother and didn’t know where to turn. I knew that I could help her.”
How does a paid patient advocate work?
“We begin by understanding the patient’s baseline,” Maisano says. “We do a medical, environmental and psycho-social assessment. Then we educate the patient. In easy to understand, non-medical terms, we explain the situation and present options, then ask questions. What are the wishes of this person? What do they want for their life, now and in the future?
“Once the patient and family make those decisions, we relay that information to people who touch that person’s life, including doctors and all care givers.”
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Here’s how Ikor helped Kay Skinner and her sister-in-law. Acting as a patient advocate for Pearl Burns, Ikor found placement for her at the locked-down Alzheimer’s unit at Arden Courts in Wilmington. When Burns fell and broke her hip in 2006, Ikor facilitated her move to ManorCare for medical care. When Burns could not return to Arden Courts because the facility had stopped accepting Medicaid, Ikor found a place for her at Regal Heights, a skilled nursing facility in Hockessin.
At almost the same time, Skinner’s husband, William, Burns’ brother, had a heart attack. He underwent cardiac surgery to save his life. Skinner was then diagnosed with thyroid cancer, which she conquered, and had to have knee replacement surgery. Skinner realized that if she and her husband died or became disabled, no one would be left to care for Burns. Again, Ikor came to Skinner’s aid.
Ikor now handles Burns’ insurance, runs her finances, monitors her pharmaceutical needs and shares power of attorney with Skinner. Skinner monitors financial activity through Ikor’s online banking program. And, through Datikor, Ikor’s secure client portal, Skinner can view all of the medical and psychological updates given to Ikor by the staff at Regal Heights.
If all of that sounds dry and technical, that’s because it is. But that’s only one aspect of patient advocacy. Consider Patricia Maisano’s response to Joe Bove’s question.
Could a patient advocate have saved Christine Bove? Maisano doesn’t have an answer, but she has plenty of questions.
“The initial diagnosis of menopause seems wrong. Immediately, I would have questioned that. Was it endometriosis? Uterine cancer? Ovarian? I would have gone to another gynecologist for a second opinion. From there, I would take Mrs. Bove to a cancer specialist. And there is no this-is-your-only-option. I would say, ‘We don’t leave this room until we have all of the options on the table. And if you don’t give me other options, that means we need to see another specialist.
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“Maybe there was a good reason that Mrs. Bove wasn’t given chemotherapy. But the patient deserves to know the reason. I would say, ‘I’m an RN. Explain it to me, and I’ll explain it the Boves.’
“If the radiation treatment continued not to work, I wouldn’t let them keep doing it. I would say, ‘We are wasting time. Some cancers move very quickly. We are talking about this person’s life, Christine Bove’s life.”
Where To Find Help
American Cancer Society
Delaware Cancer Consortium’s
Cancer Care Coordinators
National Association of Mental Illness, Delaware
New Castle County: 427-0787
Kent County: 744-9356
Sussex County: 226-3334
Patient Advocate Foundation