Americans Speak on Health Reform: Report on Health Care Community Discussions

III. Concerns About the U.S. Health Care System

D. Quality Concerns

Many Health Care Community Discussion participants identified quality of care as a significant problem in our health care system. A common theme among participants was the concern that our health system did not provide high quality of care, relative to other nations, despite its high expense. A report from a conference call Health Care Community Discussion between four doctors, including a former Surgeon General, urged, "The U.S. Health System has to be reoriented toward maximizing health status indicators with an emphasis on improving health status in the most vulnerable populations." At a Health Care Community Discussion in Northampton, Massachusetts, the group noted, "While the US has by far the highest per capita cost for health care in the world, we fall near the bottom among developed nations for standard outcomes such as infant mortality and life expectancy." The issue of quality is linked to several other issues raised in the Health Care Community Discussions including high costs, poor access to care, and the system's lack of emphasis on wellness and prevention. Most of the quality concerns were expressed in general terms (47%), although 36 percent of reports that mentioned quality focused on overuse of services and 20 percent discussed medical errors (see Figure 6).

Medical Personnel Training, Performance, and Errors

A number of Health Care Community Discussion participants expressed several concerns about the lack of skill, knowledge, or effective use of skill and knowledge on the part of providers and facilities. While studies point to system breakdowns as the primary cause for concern, most Health Care Community Discussion reports that focused on the topic offered personal examples. At a Health Care Community Discussion at a home in Ellicott City, Maryland, one participant commented that the biggest problem with the health care system is, "There are providers that should not be in practice." Specific concerns raised in the reports included misdiagnosis, failure to correctly and quickly diagnose evident problems, and delays in diagnosis and subsequent treatment. A Health Care Community Discussion in Highland, Maryland, discussed these problems in the context of a 14 year-old girl who was incorrectly diagnosed with a cyst and an underactive thyroid instead of the accurate diagnosis, cancer. In another case, failure to provide correct medications led a mother in Santa Fe, New Mexico, to report "how her daughter was given seizure medication that had the side effects of causing seizures." A Health Care Community Discussion held in Sedona, Arizona, by an advocacy group that helps homebound and disabled individuals noted, "Medical testing and test interpretation is sloppy and often inaccurate." A participant at a neighborhood gathering in Bella Vista, Arizona, attended mostly by retirees, noted that "many times poor discharge planning resulted in people being rehospitalized."

The Health Care Community Discussions elicited numerous concerns about medical errors and hospital acquired infections. Participants at a local public library in rural Kentucky expressed "concerns that you are safer outside of the hospital than in it, unless you have an advocate who can make sure the proper care is being given to a loved one." Another participant at a restaurant in Cincinnati, Ohio, described a situation where "in the process of surgery, the surgeon stretched and cut the nerve, the lung collapsed and when she told the doctor she couldn't breathe, he didn't even examine her." At a Health Care Community Discussion in a home in Newark, Delaware, a provider expressed concern that "doctors too often misdiagnose illnesses until it is too late, which only [drives] cost for treatment later on."

Some groups identified competence issues for specific populations. For example, a Health Care Community Discussion at a center for adults with severe disabilities in Palm Beach Gardens, Florida, noted, "When patients with disabilities are hospitalized, they often go without basic needs (food, hygiene, toileting, communication) unless a family member or friend can stay with the person." A gathering in Lincoln, Nebraska, also commented, "Nursing homes... often do not provide the ongoing physical therapy that is needed for maintenance of basic body functions...In other words, care is canned, not individualized."

Some Health Care Community Discussions linked concerns about competence to the lack of comprehensive training and compensation of hospital medical staff. In Westfield, New Jersey, a meeting organizer hosted a virtual meeting after snow derailed the planned Health Care Community Discussion at her home. Their report concluded, "In order to promote better health care outcomes, the compensation and training of both nurses and attendees (the people who interact most with patients) must be addressed." A second group of professionals who met for a last minute event in Woodbine, Georgia, concurred, "[the] quality of care is often minimal as hospitals try to keep costs down-i.e. hospital staff need further training / education."

Reasons for Quality Problems

Several Health Care Community Discussions reported that a lack of "humanized" care drives health quality problems. At a pot-luck lunch with seven retirees in Boise, Idaho, participants commented that patients are "herded like cattle through the doctor's office." Two board certified emergency physicians in Phoenix, Arizona, held an event with attendees ranging from "plumbers and climbers to an architect, several real estate or travel agents, engineers, nurses, internists, ED physicians, and several businessmen." Their group report stressed the importance of "chang[ing] medicine back to something based on humanism, with patients treated as human beings not numbers or sides of beef." A report from a "virtual" Health Care Community Discussion on an Albuquerque, New Mexico-based blog highlighted, "We're finding it harder and harder to talk to our doctors, and we're feeling that our day-to-day health concerns are being increasingly marginalized."

Many groups felt that the amount of time doctors are able to spend with patients is inadequate and lowers quality of care. A Health Care Community Discussion in Fredericksburg, Virginia, described this "cattle syndrome," saying, "Doctors are forced to see too many people in too short of time. [This] results in doctors treating symptoms without ever being able to counsel patients on root causes, healthy lifestyles, or alternative therapies. [They] cannot develop doctor-patient relationships that can really address health issues." A Health Care Community Discussion at a home in Rockwell, Texas, highlighted that, "many 'quality' issues really result from doctors spending inadequate amounts of time with patients. More time should be spent in diagnosis, counseling, and tailoring treatment to the individual patient with more negotiation of treatment between doctor and patients." Patients and providers at a Health Care Community Discussion at the George Washington University Institute for Spirituality and Health described the systemic effect: "Health care delivery suffers from fragmented, disjointed care because physicians don't have enough time to spend with patients – specifically in order to provide whole-patient centered care. Health care delivery should not be like a factory...Not being fully open to taking the time to discuss a patient's problem results in the administration of too many tests because physicians don't have the time to really explore patient's problems. This leads to errors because in their rush to get to the next patient, health care providers do not ask critical questions or think about proper tests; this leads to physician burnout and high turnover; and, finally, this leads to disgruntled patients whose needs are not met."

Some Health Care Community Discussion groups attributed quality problems to overworked and exhausted medical personnel. At a Muslim-American community center in the Garland, Texas area, participants reported, "It is observed that doctors have heavy workload due to shortage of doctors; therefore sometimes errors are made from their side, to overcome this shortage the H1B visa sponsorship program may be started as it was started for IT professionals and nurses." A participant from a Health Care Community Discussion group in Miami, Florida, complained, "[W]hen I called the phone rings and rings and nobody picks it up. There [is a] workers' shortage..." A group in San Francisco, California, met on the Sunday night before Christmas and argued that we "need more GPs/PCPs [general practitioners / primary care providers], so that they're not overworked and have more time to spend with patients."

Other participants blamed the short time dedicated to patient care on decisions motivated by profits and financial incentives. The report from a Health Care Community Discussion at the Kansas City Public Library raised concerns that "health care facilities have become 'for profit' institutions, with emphasis on profitability, rather than on good quality care." A Health Care Community Discussion held in Palm Beach Gardens, Florida, discussed how "decisions as to what is paid for (medications, therapies, equipment) are made by the insurance companies or Medicaid (often people with no medical training)...not by the doctor and patient." In Newport News, Virginia, a physician at a gathering, which included several family doctors, nurse practitioners, a medical office accountant, and a medical office administrator, commented, "Such low pay for thoughtful medical care forces PCPs [primary care providers] to see more patients per hour but with less time we are quicker to send patients to specialists where they receive fragmented and expensive care." A small meeting at a home in South Orange, New Jersey, summed up their many concerns in this statement, "The problem of inadequate quality is driven by financial concerns which cause time limits, inadequate coordination of services, consumer demands for inappropriate services (which are all too often provided) and provider-driven fear of malpractice (excessive and duplicate tests and procedures)."

Overuse of Health Care

Health Care Community Discussions often commented on the overuse of harmful or ineffective services. A Sedona, Arizona group felt there was an overuse of "pharmaceuticals prescribed for symptom relief" rather than "diagnosis and treatment of underlying causes." A submission from a Springfield, New York gathering reported that a woman "talked about unsuccessful visits to the doctor in which the doctor was unable to diagnose the pain in her knee but was quick to write a prescription for the undiagnosed condition." Participants who met at the United Methodist Church in Red Hook, New York, worried about "instances ...where doctors pressured them to undergo surgery, without alternatives or a second opinion being provided." The report from a Health Care Community Discussion in Solana Beach, California, attended by 80 people, expressed concern about the "over medication of our society and too many tests with not enough results." Several groups also commented on unnecessary care given at the end of life. One summary from a meeting at a home in Tucson, Arizona, attended by 26 people, noted that we "need a balance between giving comfort and heroic overcare." A Health Care Community Discussion from Hancock, Michigan, also noted that our health care system needs to "support much more palliative care, as well as hospice care."

Health Care Community Discussion groups cited several factors as causes of overuse of health care services. Malpractice liability was one commonly mentioned cause. A gathering of friends and family members in Camano Island, Washington, noted that the "response to illness is sometimes more costly because the provider is concerned about a negligence lawsuit and either prescribes unnecessary treatment or orders excessive tests to avoid possible litigation in the future." One senior, at a café in Ashland, Kentucky, noted, "Doctors who do certain things always seem to find those things when you go to them." Others mentioned the patient's responsibility for overuse. A group that met at a hospital in Nogales, Arizona, pointed out, "Health care is expensive, but this cost is made exorbitant by high patient expectations that 'everything should be done for them.'" A Glen Ridge, Florida gathering also discussed that another cause of duplication of care is the "lack of a medical record that goes with the patient."

Underuse and Fragmented Health Care

On the opposite end of the use spectrum, many participants reported that poor quality and outcomes resulted from the underuse of medically necessary care. A participant at a Health Care Community Discussion in Orange, Massachusetts, shared a story about a cancer survivor who fought "the system" for four months to receive approval for physical therapy because "radiation [had] left her arms very weak." She explained, "The wait further deteriorated her arms and should not have occurred, the treatment was a 'no brainer.' Red tape has no place in cases where it is clearly evident that medical treatment is required." Further, at a forum hosted by the Everest Institute in North Miami, Florida, one attendee described, "I heard of three different women who had untreated ovarian cysts that grew to the size of full term pregnancies before they were surgically removed. All had to be in imminent danger of death before the hospitals involved would authorize the surgery because none of the women had insurance and none could qualify for Medicaid."

Some Health Care Community Discussions highlighted how fragmentation can cause problems to fall through the cracks and lead to errors, duplication of services, and problematic prescribing. At a local restaurant in Gaithersburg, Maryland, one group noted, "Fragmentation and lack of continuity of care create opportunities for medical error and redundant diagnostic and treatment efforts and associated costs." Other groups discussed that highly specialized providers find it hard to see patients as individual cases, sometimes leading to misdiagnosis, ineffective treatment, and unnecessary expenditures. Changes in insurance coverage were also cited as a source of fragmentation. A group of physicians at an open house community holiday party in Bethesda, Maryland, described, "[P]atients have to find new docs and employers have to find new plans yearly or bi-yearly as a means to cut costs which decreases quality due to poor continuity of care."

A few participants voiced concern over the inability of many clinicians to identify and properly handle mental health and substance abuse problems. Consequently, participants felt such problems are often neglected and exacerbated, sometimes with disastrous consequences for the patient and family. A Health Care Community Discussion group facilitated by a non-profit community health organization in Asheville, North Carolina, described, "Patients bear the burden of undiagnosed mental health and substance abuse. Behavioral health is usually separated from physical health." Participants perceived the lack of integrated benefits – including mental health, substance abuse, and dental health services – as having some relationship to the lack of attention to these issues among clinicians.

Conclusion

Health Care Community Discussion participants expressed significant concerns about their ability to obtain high-quality health care. They attributed medical errors and dehumanized care to a variety of factors, including provider shortages, a lack of training and compensation for health care workers, and decisions that are driven by profit-seeking rather than a commitment to quality. Participants cited over-treatment and duplication of services as concerns, yet also worried about the underuse of needed services. In short, discussants conveyed that they live in a fragmented health care system that does not always deliver quality care. Many participants expressed that this should not be the way the system operates. As participants in a city library gathering in Seattle, Washington, wrote, "Having to sacrifice quality to lower cost = fallacy."