From retired caregivers, a spoonful of compassion

A prominent Boston physician is organizing retired colleagues to provide the personal attention that is often missing in modern medicine.

The volunteers with Bedside Advocates will not practice medicine. Instead, they aim to provide comfort and compassion while helping fragile and elderly patients navigate the increasingly complex medical system by accompanying them to the doctor's office, the hospital, and the nursing home. They hope to help patients get better care by empowering them to ask questions, follow their medication regimes, and get prompt attention to problems.

And most of all, they plan to be there when no one else is, providing relief for tired caregivers and support for patients without families, according to Dr. Jonathan Fine, who is leading the effort.

"This is an attempt at . . . helping to fix a broken healthcare system -- one where we give patients an MRI to put their head in, rather than a shoulder to put their head on," said Fine , also the founder of Physicians for Human Rights , a global health-advocacy group.

Bedside Advocates is part of a larger movement to improve patients' experiences with the healthcare system and to prevent gaps in care as they move from doctor's office to hospital and back home. Many cancer programs now provide social workers to serve as "patient navigators," and some health insurers pay for care coordinators to keep in touch with patients with chronic conditions.

"The need is just enormous," said Jim Conway , senior vice president of the Institute for Healthcare Improvement, which is supporting Fine's effort. "The complexity of care and the decisions you have to make can combine to make an unbelievably confusing experience. To have someone with you . . . is an extraordinary gift."

Conway said Bedside Advocates, which will assist patients with a range of illnesses, could serve as a national model.

Fine, 75, of Cambridge, envisions a cadre of retired doctors, nurses, physician's assistants, and trained lay people who would provide one-on-one support to thousands of patients, seeking to humanize healthcare while reducing medical errors, complications, and hospitalizations. He has already recruited about 20 doctors and secured some start-up funding from the Legislature, and he plans to launch the program in a pilot phase this spring. The organization expects to find needy patients through practicing doctors, senior centers, and people who call asking for help.

The idea for the program sprang from Fine's experience with a long time friend, retired Probate Court Judge Sumner Kaplan , who was hospitalized in 2004 with life-threatening colon cancer. Fine, who is retired from medical practice, went to visit and found his friend in such need of comfort that he ended up staying, sometimes sleeping on the hospital floor. Fine fetched ice water and helped Kaplan walk the halls. He explained in layman's terms what the doctors were telling Kaplan, and he did his best to alleviate Kaplan's anxiety about dying.

Fine, who was previously medical director of North End Community Health Center and director of public health in Boston, continued his advocacy after Kaplan went home. He helped press for a CT-scan that uncovered an internal hemorrhage, which could have killed his friend.

"He probably saved my life," said Kaplan, who at 87 is well enough to raise private funds for Bedside Advocates. "And he gave me not only a feeling of comfort, but of hope."

The two friends decided that thousands of patients could use the same kind of caring help and began organizing among a lifetime of contacts and colleagues. They raised $40,000 in private donations and secured $20,000 in the state's 2007 budget with help from Senator Cynthia Creem , vice chairwoman of the Committee on Public Health . The money is paying Fine a small salary as executive director and covering organizing expenses.

"It's a beginning," said Creem, a Newton Democrat, who intends to seek more funding for 2008. "It would be another layer of safety . . . for patients."

The project also won support from a committee of the Massachusetts Medical Society that has agreed to advertise the need for volunteers. Dr. David Singer, chairman of the Society's Committee on Senior Volunteer Physicians , said the program could help fill a role formerly occupied by primary care physicians, who no longer have time for much explaining or coordinating of care outside the office.

"Frequently, when a patient is hospitalized, there's an enormous amount of confusion in the patient's mind about who is responsible for his care. There's a lot of consequences to this, not the least of which is unnecessary anxiety," Singer said. "Dr. Fine's program aims to close that gap. It will give the patient . . . an educated ombudsperson."

But the effort has run into resistance from others in the medical profession. Some doctors have told Fine that they don't want anyone second-guessing their decisions or intervening between them and their patients. Hospital officials were lukewarm to Fine's requests for partnerships, he said, citing worries about liability and patient privacy.

Fine acknowledges that some issues still need to be worked out. Most retired doctors no longer pay for malpractice insurance, so the organization needs to figure out how to protect them from possible lawsuits. In addition, the organization needs to ensure that patients give the advocates legal permission to see their private medical records, to better help them. The law firm McDermott Will & Emery is volunteering its help with these legal questions.

And then there is the issue of screening volunteers.

"We need people who have the utmost in diplomatic skills," said Fine, who believes the organization can work all this out in a few more months.

Meanwhile, he is continuing to help patients. Fine met Jose Amado when the two were roommates at Massachusetts General Hospital, in December 2005. Fine recovered quickly from a severe migraine, but Amado, 53, was struggling to come back from surgery for an intestinal blockage and his second episode of bleeding into the fluid around the brain. After Fine was discharged, he visited daily, sometimes helping translate for Amado, who is more fluent in Portuguese than English.

When Amado went home to Fall River, Fine helped him adhere to a medicine regimen that includes pills for high blood pressure, gout, and high cholesterol. Learning that another brain bleed could kill Amado, and that his work in heavy construction might trigger that bleeding, Fine helped Amado apply for disability payments. Fine also guided Amado to a primary care doctor who speaks Portuguese, Dr. James Nolan of the Cambridge Health Alliance .

"It can be very helpful," Nolan said of Fine's role. "It's like having your own attorney in the court of medicine."

Amado puts it in more simple terms. Fine, he says, has become like a father to him. With Fine at his side, Amado said he is much more comfortable with the litany of specialists he sees.

"A man like Jonathan, the US needs millions like him."

Alice Dembner can be reached at dembner@globe.com. To contact Bedside Advocates, call 617-547-0023, e-mail jonathanfine@bedsideadvocates.org, or go to bedsideadvocates.org.