Difficult Patients and Termination of Care in Pediatrics

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Lawrence K. Jung

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Introduction

Dealing with a difficult patient is a common problem in a medical setting. In a study of 449 general internists, practitioners reported that about one out of every six patients falls into the category of “difficult.” Factors that contribute to a patient being considered difficult include: patients with mental health problems, patients with multiple somatic complaints, and patients with threatening or abrasive personalities. [1] Many strategies are proposed to manage interactions with patients if they exhibit these types of behavior, but in some instances a physician may feel the difficulties cannot be resolved. In such situations the termination of the patient-physician relationship should be considered a last resort. [2]

The problem in the practice of pediatrics is that in addition to the patient, there is the presence of a parent/guardian who is often the one involved in the difficult encounter. In this instance, dealing with the “difficult parent” poses an additional ethical consideration because the person(s) being “difficult” and the person at risk of loosing access to medical care in your practice are not one in the same. Can it be ethical to deny treatment of one person due to the actions of another, and if not, what recourse do doctors have? To explore this issue, consider the following case.

The Case
Practicing in a mid-western city, you are the only pediatric rheumatologist in the region. A six-year-old child presents in your office, with a history of fever and polyarthritis. Your evaluation indicates that the patient has a classic history and finding of systemic juvenile idiopathic arthritis (SJIA).

Furthermore, you find out from your pediatric rheumatology colleague 200 miles away that the patient was treated there, and told that parents were uncooperative with her recommendations. You feel that the parents have an antagonistic disposition towards you and your staff, and have repeatedly used abusive and unacceptable language in the reception area.

You formulate a treatment plan that the parents agree to follow. Unfortunately, the patient does not respond well to therapy and more intensive therapy is required. The parents become increasingly belligerent in the office during follow-up visits. They behave rudely to the office staff, and continue to use abrasive and foul language in the waiting area, in front of other waiting patients and their families.

One day, your nurse comes to you with a strong complaint about this family and refuses to work with the parents. This case raises the following issues:

1. How to manage a parent/family that is disruptive to your practice?
2. Should you terminate care and thus puts this child health and well-being in jeopardy?
3. What are the ethical considerations in discontinuing care?

Difficult encounters

While it is well known that physicians feel they have difficult encounters with their patients frequently [3,4,5] there is not much data in pediatric settings, and much of what has been written is based on adult literature. However, pediatricians and pediatric rheumatologists face challenges similar to those faced by their colleagues in adult medicine. What sets them slightly apart is that often the parents/guardians are contributors of the difficulty encounters.

In his 1978 NEJM article (6), Graves defined 4 types of patients who are perceived as difficult: 1) dependent clingers 2) entitled demanders 3) Manipulative Help-rejecters and 4) self-destructive deniers. This set of perceptions has been adopted into general use [7] including in the pediatric literature. [8]

In exploring difficult encounters in the pediatric age groups (8), Breuner and Moreno adopted the Graves’ classification of difficult patients, and applied it to the parents/ caretakers who potentially lead to difficult encounters. They and others [7] recognize that, in addition to parent/patient factors, there are other factors leading to difficult encounters: physician factors and health care system factors. Parent factors may include certain personality and behavioral traits which may be exacerbated by complexities of a severe chronic illness in their children. Physician factors may include the physician’s personality, cultural gaps, and other external factors. The stresses imposed by the health care system and the economic climate can influence both the parent/patient and the health care providers.

In approaching the difficult parent/physician encounter, the physician/healthcare provider must be cognizant of his/her limitations and must show empathy to the parent/patient and their clinical situation. Better health outcomes are more likely if the parent/patient and the healthcare provider share certain common ideas (state of health, need for medication, etc.) and communicate their concerns effectively.

As in other clinical encounters in Pediatrics, the health care provider must take into account the family dynamics in thoroughly evaluating the clinical status of the child. A proper assessment of the family’s situation, including the physical and mental wellbeing of the caretakers and the financial aspect of the patient’s care, is essential to ensure that optimum care is provided to the child. Often a team approach is needed, and the involvement of psychologists, social workers, patient advocates and patient navigators is very helpful. Referral to another rheumatologist for a second opinion is especially helpful with parents/patients who may have certain pre-conceived ideas about the child’s condition and treatment, or who might have concerns about the proposed treatment plans. Thus, the physician must ensure proper communication channels are open; this will lead to better cooperation between the health care provider and the parent/patient.

However, if after attempts to alleviate the difficult encounters failed, terminating the patient/physician relationship may turn out to be in the best interests of both parties, although it has been documented that it is an overwhelmingly negative experience for the patient. [9,10] This is especially the case when the patient is a minor, who may have very little control over the situation, and who are especially susceptible to discord among parents and care providers.

Termination of patient-physician relationship

Termination of patient-physician relationship is a subject that has not been discussed much in Pediatrics. Termination of care is justifiable for a situation that is 1) harmful to the healthcare provider or his/her practice (abusive and violent behavior, failure to pay bills, repeatedly missed appointment, over demanding etc.) or 2) harmful for the patient (non-adherence to medical advice, conflict of interest between physician and patient care, harmful behavior or practices such as drug abuse). Recently, there have been heated discussions in the pediatric community over whether refusal for vaccination should justify termination of patient-physician relationship [11,12,13] and health-related reasons for dismissal from medical practice are on rather murky ethical ground. [12]

In the case under consideration, the parents’ unacceptable behavior would qualify as grounds for termination of the patient/physician relationship. The parents’ behavior not only disrupts the clinic staff’s routine and sensibility, but has a significant impact on the other children and families in the waiting area. It is possible such behavior could escalate to threaten the safety of the office staff and other patients, in which case the danger could not be said to have been unforeseeable. Thus, termination of the patient/physician relationship is justifiable even though the health and well-being of the child is at jeopardy.

Termination of a patient/physician relationship is a step not to be taken lightly. There are important legal and professional constraints in terminating a patient/physician relationship. The patient/physician relationship is based on the concept of “beneficence-fidelity”. This concept dictates 1) a commitment to promote the health and well-being of the patient (beneficence), 2) a willingness to subordinate one’s own interest to the interest of the patient’s health, and 3) a commitment to earn and maintain the patient’s trust. This principle is endorsed the AMA, American College of Physicians and UK General Medical Council.

A physician is free to choose whom to treat (in nonemergency situations), but once a patient-physician relationship has been established, the physician is obligated to provide the patient with consistent, ongoing care as needed. [14] This relationship is expected to be one of mutual respect and collaboration, with patients sharing the responsibility for their health care. Central to this is the concept of non-abandonment. [15] Thus, in the event of terminating a patient/physician relationship, the physician is obligated to care for the patient for a period of time, to permit the parent/patient to find other treatment options.

Medico-legal aspects of termination of patient-physician relationship
Once a decision has been made to terminate the patient-physician relationship, it is prudent to protect the practice and the physician within the legal framework. Make sure the basis for the termination and attempts for reconciliation are clearly documented in the medical records. Legal expertise in this regard should be sought as soon as the decision has been made, so that proper risk management procedures can be set in place. Finally, in some cases safety and security of the patients and staff may have to be addressed. Steven Harris’s article in the December issue of “The Rheumatologist” provides a concise guideline on this process. [2]

Transferal of Care

Terminating the patient-physician relationship must be done in accordance with legal and ethical standards, and it is the responsibility of the physician who initiates the termination of patient/physician relationship to ensure that the patient does not have a lapse in his/her medical care. Thus, options for care by another medical practitioner must be provided. The case under discussion is complicated by the lack of expertise in the area.

There is a great shortage of pediatric rheumatologists throughout US and internationally. There are about 250 pediatric rheumatologists in the US, and there are many cities and even states where there are no pediatric rheumatologists. As in the case in point, being the only pediatric rheumatologist in town limits the option of referral to comparable care. Indeed, termination of patient-physician relationship in this case may have a significant impact on the child’s clinical outcomes, as others with the expertise to care for this child are not readily available. The parent/patient may have to seek expert care out of the immediate surrounding area. An alternate approach is to refer this patient to an adult rheumatologist who has prior experience with caring for children. Due to the lack of pediatric rheumatologists, some adult rheumatologists have become experienced in pediatric care. Such practitioners are a great resource, especially in smaller communities where there is no pediatric rheumatologist. Partnering of the adult rheumatologist with a nearby pediatric rheumatologist may prove to be a possible resolution of such situation.

The Case, continued
In the aforementioned case, the family has been counseled regarding the issues of concern. Further exploration of the social situation reveals that the family has recently relocated to the area with little social support system. Furthermore, the medical care needed for the child has imposed financial constraints on the family unit. Finally, the parental expectation of quick resolution of the child’s problem has not occurred, and this has led to growing dissatisfaction with the medical establishment.

Attempts have been made to engage the family in resolving some of the conflicts, including social work support. However, the parents continue to resist to recommendations, and fail to meet their obligations such as keeping appointments with caretakers.

It is decided to terminate the physician-patient relationship. The family is given a list of pediatric rheumatologists in the surrounding states, as well as lists of local adult rheumatologists who may provide some pediatric care. The family ultimately elects to seek care with a local adult rheumatologist.

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