Risk Management

The High Cost of Refused Care

Anne M. Menke, RN, PhD, OMIC Risk Manager

Digest, Winter 2013

A patient calls to report symptoms suggestive of endophthalmitis but refuses to drive to a satellite office where the ophthalmologist is working that day. A patient who recently had cataract surgery calls the surgeon to complain of headaches unrelated to the surgery but won’t go see her primary care physician. A glaucoma patient refuses to come in for a follow-up visit to perform visual fields and check the optic nerve but wants the ophthalmologist to keep refilling her prescription. A comprehensive ophthalmologist refers a patient to a glaucoma expert for surgery but the patient won’t go. The parents of a minor patient with retinoblastoma won’t agree to surgery. These narratives are just a few of the many examples of situations where patients of OMIC-insured physicians, or patients’ representatives, have refused care. These patients and parents gambled that they could beat the odds of not only vision-threatening but life-threatening conditions. All patients sustained harm, and all sued their ophthalmologist when they did. In this issue of the Digest, we explore the high cost to patients and physicians alike when care is refused, and we propose ways to reduce this risk.

Who may refuse?

Physicians may be uncomfortable when care is refused, but recognize that adult patients have the legal right to consent to, or refuse, recommended care. Indeed, this right is the premise behind informed consent discussions, where the physician explains the patient’s condition, proposed treatment, and its risks, benefits, and alternatives, including no treatment. In order to make a meaningful choice, however, adult patients must have decision-making capacity (DMC). Adult patients are presumed to have DMC if they appear to understand their condition and the risks associated with the recommended treatment, and are able to communicate their wishes. In the Fall 2010 issue of the Digest, we addressed the need to screen for dementia, especially in older patients. Patients who seem “difficult” and miss appointments or refuse care may actually be suffering from dementia, so the first step in assessing a patient’s refusal of care is to consider cognitive impairment. Such patients should be referred to a primary care physician for evaluation. See “Older Patients Need Additional Informed Consent Consideration” for a discussion of dementia screening tools and surrogate decision-makers.

Clarify why care is refused

Having ruled out cognitive impairment or lack of decision-making capacity in adult patients, the ophthalmologist will next want to ascertain the reason for the patient’s refusal. Ophthalmologists and staff are often quite frustrated when patients refuse recommendations, and just as often make assumptions about the reasons. The healthcare team members may lose important opportunities to intervene if they do not take the time to discern the patient’s motives. A simple, straightforward approach can be very effective: “You’re not willing to have the surgery? That is certainly your choice, but I would like to understand your decision. Can you tell me more about it?” Sometimes, patients disagree with the diagnosis: “I don’t need the surgery because that is not what’s wrong with me!” Keeping an open mind, the physician can ask the patient “What do you think is wrong?” Staff can play an important role by anticipating problems with compliance, and letting patients know that it is acceptable to ask questions.

Educate the patient about the disease process and treatment recommendations, targeting the education to the reason for the refusal. When possible, identify social service resources that may help, such as pharmaceutical companies that may provide free or reduced-cost medications. Have information available about the enrollment criteria and process for obtaining state and federal assistance, and be aware of transportation services for patients. If the care is not authorized by the patient’s insurance, act as an advocate and appeal the decision. If the main reason behind the refusal is an unwillingness to pay for care, a different approach is needed. See the Hotline article for suggestions on how to handle this.

Duty to warn

If the patient persists in declining recommended treatment, the physician must then obtain what is referred to as “informed refusal.” While courts have recognized the patient’s right to refuse treatment, they have consistently ruled that the decision must be an informed one. OMIC’s claims experience has shown that experts and juries alike consider the patient to be “ignorant until proven educated.” To ensure that patients have adequate information on which to base their choice, physicians are thus required to warn patients of the foreseeable consequences of refusing treatment, such as reduced vision or blindness.

Some refused care situations are straightforward, prompting physicians and their staff to warn patients. In the lawsuit featured in this issue’s Closed Claim Study, a postoperative patient with symptoms highly suggestive of endophthalmitis was asked to come in to a satellite office where a physician could see him immediately since the office he usually went to was closed that day; the patient refused to drive to the other office, claiming it was too far away. Staff and the ophthalmologist were concerned and repeatedly warned the patient that a delay in treatment could lead to serious vision loss or blindness in that eye—all to no avail.

Physicians can only warn of consequences they foresee. About eight days after cataract surgery and the implantation of a premium intraocular lens (IOL), a patient reported that she had experienced migraine-like headaches since the procedure and had been awakened at 3 am by one the night before her appointment. When the eye exam was unremarkable and the only finding was a tender area in the right sub-occipital area, the eye surgeon informed the patient that the IOL was not causing her headaches and instructed her to contact her primary care physician (PCP) to explore other causes. The headaches persisted to the point that the patient called the ophthalmologist five days later and asked to have the IOL removed. The physician again advised her to see her PCP or go to the emergency room. She refused to do either, convinced they would only prescribe more pain medication. The patient was worked in to the ophthalmologist’s schedule several hours later and was so ill that she vomited twice while in the waiting room. The eye exam was again normal. Concerned, the ophthalmologist contacted the PCP himself and arranged for the patient to be seen right away. She saw her PCP that day and a CT was performed. The patient collapsed and died the next day right after a return visit to the PCP. The CT showed a large, chronic subdural hematoma, confirming that the cause of the headaches was not related to the cataract surgery. The ophthalmologist was criticized by both plaintiff and defense experts for not examining the optic nerve or ordering a sedimentation rate, since the patient had no history of migraine headaches but did have hypertension. The defense expert acknowledged, however, that the eye surgeon did arrange for the patient to see her PCP and confirmed that her death was unrelated to the eye surgery. The ophthalmologist settled for a nominal amount, and the case continued against the PCP.

Ongoing and repeated noncompliance

OMIC’s claims data shows that ophthalmologists who treat glaucoma patients frequently confront noncompliance and refused care, but often do not adequately warn their patients of how such noncompliance puts them at risk. One patient with chronic primary open-angle glaucoma had homes in both the Northeast and the South. Citing a planned trip to her other home as the reason, she declined to come in for her follow-up examination during which visual field testing was scheduled. She nonetheless asked the ophthalmologist to renew the prescription for her glaucoma medication. The physician agreed to the patient’s request, not just once, but over many months. By doing so, he operated on the assumption that the medication was controlling the patient’s disease and so did not warn her that the medication might not be effective or that, without an examination, her disease could progress despite treatment. Unfortunately for both the patient and the physician, this is exactly what happened. When she suffered visual loss as the result of progressive glaucomatous changes, she sued her ophthalmologist. Defense and plaintiff experts agreed that the patient’s refusal to come for follow-up care was a factor, but felt that it was below the standard of care for the physician to continue to prescribe without examining the patient and warning her of the consequences of refusing to be examined. OMIC settled the case.

Sometimes, the patient provides no reason for refusing to follow treatment recommendations. One such patient changed her appointments at will, coming only when it was convenient for her, as evidenced by several pages in her medical record devoted to the dozens of missed and rescheduled appointments. Despite written instructions and regular documented warnings from her physician about the importance of administering her glaucoma and steroid drops as instructed, she continued to take them as she pleased, leading to sustained increased intraocular pressure over a six-month period during which time she kept missing appointments. It was only when signs of glaucoma progression were noted that the comprehensive ophthalmologist referred her to a glaucoma surgeon. She allegedly refused, but there was no documentation in this instance of the warning. The patient denied that she had refused to see the glaucoma specialist but, since she also denied that she had missed appointments, defense counsel challenged her credibility, and the defense expert pointed to the patient’s noncompliance as a significant cause of her diminished vision. Experts on both sides insisted that regardless of the patient’s behavior, the eye MD had a duty to take more decisive action in the face of this patient’s repeated unwillingness to partner in her care, such as referring the patient much earlier and documenting a warning when she declined the referral. Not surprisingly, the plaintiff did not cooperate any better with her attorney than she had with her ophthalmologist. She “no showed” for her own deposition and eventually decided not to pursue the case. See “Noncompliance: A Frequent Prelude to Malpractice Lawsuits” for detailed recommendations on prescription refill policies, how to manage missed appointments, track tests, and reduce the risk of noncompliance.

Duty to report neglect

Patients who have not reached the age of majority, generally 18 years of age, do not usually have the legal authority to consent to or refuse care (see Policy Issues for more information on minor consent). Eye surgeons often have questions about how to handle a parent or legal guardian’s refusal to give consent for the treatment of a minor. The concern is warranted, for the physician has both a duty to the child to provide needed care, as well as a duty to report suspected child abuse or neglect. State laws generally include in the definition of neglect a situation in which the child’s health may be endangered by the failure to provide medical care, demonstrating that a parent’s right to refuse certain types of care is restricted. For example, an OMIC-insured ophthalmologist diagnosed retinoblastoma, and explained to the distraught parents that surgery was urgently indicated in order to preserve the child’s life. The parents declined. The same advice was given by a series of physicians who were asked by the parents to see the child. Eventually, the parents were reported to the state’s child protective services department, and the child had the surgery after being removed from the parents’ home. The surgery occurred too late to save the child’s life. The parents proceeded to sue each physician who had examined the child; their suit was unsuccessful.

Ophthalmologists who care for minor patients should seek risk management assistance when parents refuse care. Physicians should have a low threshold for reporting refused care as possible child neglect if the minor patient risks significant loss of vision or harm. Consistent with this recommendation, OMIC has amended its sample letters to parents of infants being screened for retinopathy of prematurity, for example, to state that if the parent refuses screening or treatment for ROP, the ophthalmologist will discuss the refusal with the other physicians involved in the infant’s care and with the state’s child protective services.

These case examples demonstrate that physicians put their professional well-being and the patient’s health at risk if they do not manage patients and parents who refuse care. Physicians may improve the likelihood of patients getting the needed care, and reduce their malpractice exposure, by exploring the reasons care is refused, by warning patients of the consequences of refusing care, and by documenting that discussion. When a surrogate decision-maker is refusing care, the physician should consider whether the refusal constitutes neglect and whether there is a duty to report the refusal to adult or child protective services. OMIC policyholders needing assistance with these issues are encouraged to contact our confidential risk management hotline by phone at 800.562.6642, option 4, or by email at riskmanagement@omic.com.