In our annual HealthLeaders 20, we profile individuals who are changing healthcare for the better. Some are longtime industry fixtures; others would clearly be considered outsiders. Some are revered; others would not win many popularity contests. All of them are playing a crucial role in making the healthcare industry better. This is the story of Jim Geary.
This profile was published in the December, 2011 issue of HealthLeaders magazine.
"Support groups are as needed today as they were 25 years ago. There's an array of issues that medical personnel cannot really address or don't have the time to address."
At this very moment across the United States, hospitals are struggling with a series of interconnected challenges: How to get patients more engaged in their care and encourage providers to practice participatory medicine; how to coordinate care along the entire continuum; how to build a care team that includes not only providers and patients, but also family members and advocates; how to incorporate alternative medicines and treatments and spiritual beliefs and practices into the patient's care plan; and how to improve quality during care transitions to improve outcomes and prevent readmissions.
To Jim Geary, these issues are nothing new. He's been challenging the healthcare system to address them for 30 years.
Geary moved to San Francisco in 1974 and he worked for three years as an attendant on an oncology unit. A few years later he was protesting alongside Mayor George Moscone and Supervisor Harvey Milk against the Briggs Initiative, which would have made it mandatory to fire gay teachers and any public school employees who supported gay rights. The measure was defeated. Several weeks later, Moscone and Milk were assassinated.
Geary found some kind of solace as a volunteer for the Shanti Project, a support group for people with life-threatening illnesses. In 1982, while serving as executive director, Geary spearheaded a change in mission, turning Shanti into what's considered the first support agency for the disease that came to be known as AIDS.
(Geary later resigned from the organization amid allegations of nepotism, sexual harassment, and discrimination. Both Geary and the Shanti Project were ultimately cleared of all charges.)
As predominantly gay men were being ravaged by a little-understood virus, they were also being vilified by the public and abandoned by friends and family. Many healthcare workers were not immune to the panic and confusion, donning gowns, masks, and gloves for fear they might catch the virus through the air or by touching a patient. Shanti proved to be not only a key support network for patients, but also played a key role in educating the public and healthcare professionals.
In early 1983, Kaiser Permanente invited Geary and several AIDS patients to tell their stories to doctors, nurses, and other healthcare professionals.
"That was so empowering and so transforming for the healthcare professionals. A lot of them had never seen a person with HIV at the time or interacted with one. Hearing the stories firsthand was a tremendous opportunity for them to dispel a lot of the stereotypes that they had previously held."
The kind of dialogue could help healthcare professionals better treat patients suffering from today's epidemics: obesity, diabetes, and heart disease, for example, he notes.
Geary went from being an activist for all AIDs patients to an advocate for one in 1992, when his own lover of 20 years, Jess Randall, was diagnosed with AIDS. As they navigated the healthcare system together, many of its problems—issues with which the industry still grapples today—became painfully apparent.
About a year before Randall died, he was admitted to the hospital with a high fever and a sepsis infection. That was Geary's first encounter with the dangers inherent in lack of care coordination and patient engagement and empowerment.
Randall's therapy had not been working, but the nurses on the new shift didn't know that—they didn't know Randall—and followed the doctor's standing orders.
"As a lover, I was keenly aware of the dramatic changes that had happened to him within a 24-hour period," Geary says. "I pleaded with the nursing staff to take note of that." Even when he convinced the charge nurse to call the doctor, she wasn't able to clearly communicate the changes in Randall's condition over the past 24 hours because she had not seen them first-hand.
"I called the doctor myself and I said, 'Something's not right—you really need to get in here. I think he's going to have a heart attack or go into respiratory arrest very shortly.'"
The doctor moved Randall to intensive care. But once he was stabilized, nurses wanted resume the same standing orders that Geary believes put Randall in jeopardy. Geary, as Randall's healthcare surrogate—refused the treatment. Geary believes if he had not had the courage to speak up, the treatment would have hastened Randall's death.
Although many believe that stronger physician-patient partnerships could improve quality of care, the old doctor-as-God model is still too common, Geary says.
"Some people are basically arrogant and it is 'physician or head nurse knows best.' When you come up against that it is difficult to assert yourself, particularly in a weakened physical and emotional state to advocate for yourself. I think that was one of the tremendous benefits of Shanti volunteers is that often they could advocate for a patient when the patient was not able to advocate for themselves," he says.
"The majority of healthcare professionals are coming from a caring, loving place and a passionate place, but they get overwhelmed, they get stressed, they get burned out, they work long hours and in managing their time they feel they only have a certain amount to provide each patient. So maybe some of that curtness and that way of dismissing the patient's voice is a result of that."
Even so, healthcare must listen to the patients' voice, he says, and "really connect with that person before us and inquire genuinely about what their needs are and how we can assist them. That may take another minute or so but it just gives the patient such a feeling of comfort and ease when they're seen in that light and they're treated with that type of respect."
Healthcare professionals are often afraid that such emotional connections will lead to burnout—Geary says he understands that and agrees there's a need to set limits.
"In order to be a good doctor or healthcare professional you need to allow yourself to feel to a certain level. You need to put yourself in the shoes of the person you are serving for a few moments. And you need to allow yourself to be affected, emotionally, by their story," he says. "Burnout is when you wall yourself off emotionally—when you're so afraid of connecting with somebody on that heart level, on that emotional level … It's a terrible disconnect from the person you're trying to service."
Healthcare organizations could do a better job of supporting patients in concrete ways, as well.
"Support groups are as needed today as they were 25 years ago," Geary says. "There's an array of issues that medical personnel cannot really address or don't have the time to address. The patient is not necessarily in need of physiological or therapeutic counseling, but they really want to meet someone who has gone through or is going through a similar experience."
Hospitals should play an active role in forming support groups to lessen the alienation that people newly diagnosed with a disease or condition feel, and increase their sense of empowerment, Geary says.
"People don't write grants to create support groups, they just kind of happen willy-nilly. And yet the benefits of them are just tremendous," he says. It would be "wonderful" if these groups were offered in a hospital setting.
"You treat someone at the hospital and then you send them home, and oftentimes you send them to a home where they don't have that type of emotional support available. They don't know other people with the illness. Certainly local AIDS organizations can help with that but a lot of people fall through the cracks," he says.
"This would be a great thing for hospitals to do more of. It's certainly low-cost to them and it would make their patients feel much more secure and probably a lot of the issues just in terms of time management … could so easily be handled within a support group. It would also have the benefit of empowering patients to be able to articulate more clearly what they need from their doctor-patient relationship."
This article appears in the December 2011 issue of HealthLeaders magazine.