Ethics Forum: Difficult Parents and Termination of Care in Pediatrics

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.

Dealing with a difficult patient is a common problem in a medical setting. In a study of 449 general internists, difficult patients are considered to be those patients with mental health problems, patients with multiple somatic complaints, and patients with threatening or abrasive personalities.¹ Many strategies are proposed to deal with these difficult patients. In the event that the difficulties cannot be resolved, then termination of the patient–physician relationship will be 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 additional ethical consideration.

The Case

Practicing in a midwestern 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 presentation of systemic juvenile idiopathic arthritis.

Furthermore, you learn from your pediatric rheumatology colleague 200 miles away that the patient was treated there, and that the parents were uncooperative, questioning and then ignoring her recommendations. You also find that the parents have an antagonistic attitude towards you and are abusive to your staff; they repeatedly used unacceptable language in the reception area, and their behavior has produced considerable disruption of the office environment. Nonetheless, after considerable consultation, you manage to formulate a treatment plan that the parents agree to follow.

Unfortunately, the patient does not respond well to treatment, and more intensive therapy is required and recommended. Throughout this process, the parents have become increasingly belligerent at follow-up visits, demonstrating similar patterns of abusive behavior, often in the waiting area, thus in front of other waiting patients and their families. Finally, after a particularly unpleasant office visit, your nurse comes to you complaining strongly about this family and refuses to work with the parents in the future.

This case raises the following issues:

1. How do you manage a parent or family that is disruptive to your practice?
2. Should you terminate care, and thus put this child’s health and well-being in jeopardy?
3. What are the options, other than discontinuing care?

Difficult Encounters

Physicians have difficult encounters with their patients frequently; it is estimated that one of six encounters belongs to this category.^3,4,5 The literature pertaining to the problem of the disruptive patient is largely based on the adult population, with very little commentary from the pediatric setting. However, pediatricians and pediatric rheumatologists face similar challenges to their colleagues in adult medicine. What sets them slightly apart is that often the parents/guardians are contributors, if not primarily responsible, for the difficult encounters.

In his 1978 New England Journal of Medicine article, Graves defined four types of difficult patients: 1) dependent clingers; 2) entitled demanders; 3) manipulative help-rejecters; and 4) self-destructive deniers.⁶ This nomenclature has been adopted for general use, including in the pediatric literature.^7,8

In exploring difficult encounters in the pediatric age groups, Breuner and Moreno have employed the Graves’ classification, applying it to difficult parents/caretakers.⁸ They and others recognize that, in addition to parent/patient factors, there are other determinants of disruptive behavior, specifically physician- and healthcare system–derived factors.^7,8 Parent factors may include personality and behavioral traits that may be exacerbated by the complexities of a severe chronic illness in their children. Physician factors also may be derived from the physician’s personality, but cultural considerations as well as other external factors may also be underappreciated or unrecognized by the physician. Further, stresses imposed by the healthcare system and the current economic climate are also applicable to both the parent/patient and the healthcare provider.

In approaching such circumstances, the physician/healthcare provider must be cognizant of his or her limitations and must show understanding, even empathy, to the parent/patient. An active attempt to appreciate the nature of the responsible stresses experienced by the parent and patient is vital to achieving optimal healthcare outcomes. Indeed, success in such circumstances is more likely if the parent/patient and the healthcare provider share certain common points of view (i.e., agree on the state of health of the child, the need for medication, etc.) and communicate their concerns effectively.

As in other clinical encounters in pediatrics, the healthcare 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 well-being of the caretakers, as well as the financial stresses imposed by the patient’s illness on the family, is essential in order to ensure that optimum care is provided to the child. Often, a team approach is needed, involving psychologists, social workers, patient advocates, and patient navigators. Also, referral to another rheumatologist for second opinion is especially helpful, particularly in parents/patients who have preconceived ideas about the child’s condition and the treatment plan. The physician must make every attempt to ensure that proper communication channels are open, as this will lead to better cooperation between the healthcare provider and the parent/patient.

However, if after attempts to alleviate the difficult encounters fail, termination of the patient–physician relationship may be in the best interest of both parties—although it should always be a last resort, because it is well documented that such outcomes result in an overwhelmingly negative experience for the patient.^9,10

Termination of Patient–Physician Relationship

Termination of patient–physician relationship is a subject little discussed in pediatric literature. Termination of care is considered justified in situations that are: 1) potentially harmful to the healthcare provider or his/her practice (abusive and violent behavior, failure to pay bills, repeatedly missed appointments, overly demanding patients, etc.); or 2) harmful to the patient (nonadherence to medical advice, conflict of interest between physician and patient care, harmful behavior or practices, such as drug abuse, etc.). A related subject, whether parental refusal for child vaccination is grounds for termination of a patient–physician relationship, has recently received widespread attention and produced heated commentary in the pediatric community.^11-13 As an officially sanctioned medical practice, such a decision remains on rather shaky ethical ground.¹²

In a case under consideration, the parent’s unacceptable behavior would qualify as grounds for termination of the patient–physician relationship. The parent’s behavior not only disrupts the clinic staff’s routine and sensibility, but it has a significant impact on the other children and families in the waiting area. Sometimes such behavior may escalate to threaten the safety of the office staff and other patients. Thus, termination of the patient–physician relationship could be considered justifiable even though, given the shortage of physicians with the required expertise, the health and well-being of the child may be at jeopardy. Due to important legal and professional constraints, it is a step not to be taken lightly.

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 by the American Medical Association, the American College of Physicians, and the General Medical Council of the United Kingdom.

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 in the responsibility for their healthcare. Nonetheless, for a variety of reasons as discussed above, this relationship may irrevocably break down, necessitating a termination action. Central to decision making in such circumstances is the concept of nonabandonment. Nonabandonment requires that, after a decision to terminate care has been made, the physician remains obligated to provide care for the patient for a specific time sufficient to permit the parent/patient to find another medical provider.¹⁵

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 ensure that the practice and the physician are protected from the legal perspective. One must make sure that both the basis for the termination and attempts for reconciliation are clearly documented in the medical records. Legal advice should be sought as soon as the decision has been made so that proper risk management procedure can be set in place. Finally, in some cases, safety and security of the patients and staff of the practice may have to be addressed. Steven Harris’s article in the December 2012 issue of The Rheumatologist provides a concise guideline on this process.²

Transfer 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 or her medical care. Thus, options for care by another medical practitioner must be provided. The case in discussion is complicated by the lack of expertise in the area.

There is a great shortage of pediatric rheumatologists throughout the U.S. and internationally. There are about 320 pediatric rheumatologists in the U.S., and there are many cities, even states, where there are no pediatric rheumatologists. In the case presented herein, with the physician being the only available pediatric rheumatologist, options for the provision of comparable care are severely constrained; a decision to terminate care therefore is likely to have a significant impact on the child’s clinical outcome. The parent/patient may have to seek expert care outside of the immediate surrounding area. In this circumstance, an alternative would be to refer this patient to an adult rheumatologist with experience in caring for children. Due to the lack of pediatric rheumatologists, some adult rheumatologists have become experienced in pediatric care and 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 provide a possible resolution to this situation.

The Case, Continued

In the case presented, the family was counseled regarding the issues of concern. Further exploration of the social situation revealed that they had recently relocated to the area with little social support system. Furthermore, the medical care needed for the child had imposed financial pressures on the family, straining their solidarity. Finally, disappointment concerning the parental expectation of quick resolution of their child’s problem has led to 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 recommendations and fail to meet their obligations, such as keeping their appointments.

It was therefore decided to terminate the physician–patient relationship. The family was given a list of pediatric rheumatologists in the surrounding states, as well as lists of local adult rheumatologists. The family ultimately elected to seek care with another local adult rheumatologist.

Dr. Jung is chief of rheumatology at Children’s National Medical Center in Washington, D.C.

References

1. An PG, Rabatin JS, Manwell LB, Linzer M, Brown RL, Schwartz MD. Burden of difficult encounters in primary care: Data from the Minimizing Error, Maximizing Outcomes Study. Arch Intern Med. 2009;169:410-414.
2. Harris SM. Terminating the physician–patient “contract.” The Rheumatologist. 2012;6(12):45.
3. Mathers N, Jones N, Hannay D. Heartsink patients: A study of their general practitioners. Br J Gen Pract. 1995;45:293-296.
4. Lin EH, Katon W, Von Korff M, et al. Frustrating patients: Physician and patient perspectives among distressed high users of medical services. J Gen Intern Med. 1991;6:241-246.
5. Hahn SR, Kroenke K, Spitzer RL, et al. The difficult patient: Prevalence, psychopathology, and functional impairment [published correction appears in J Gen Intern Med. 1996;11:191]. J Gen Intern Med. 1996;11:1-8.
6. Graves JE. Taking care of the hateful patient. NEJM. 1978; 298:883-887.
7. Lorenzetti, RC, Jacques CHM, Donovan C, Cottrell S and Buck J. Managing difficult encounters: Understanding physician, patient, and situational factors. Am Fam Physicians. 2013; 87:419-425.
8. Breuner CC, Moreno MA. Approaches to the difficult patient/parent encounter. Pediatrics. 2011;127;163.
9. Stokes T, Dixon-Woods M, Windridge KC, McKinley RK. Patient accounts of being removed from their general practioners list: A qualitative study. BMJ. 2003;326:1316-1325.
10. Stokes T, Dixon-Woods M, McKinley RK. Breaking up is never easy: GP’s accounts of removing patients from their lists. Fam Practice. 2003;20:628-634.
11. Nulty D. Is it ethical for a medical practice to dismiss a family based on their decision not to have their child immunized? JONAS Healthc Law Ethics Regul. 2012; 13:122-124.
12. Wicclair M. Dismissing patients for health-based reasons. Camb Q Healthc Ethics. 2013;22:308-318.
13. Flanagan-Klygis EA, Sharp L, Frader JE. Dismissing the family who refuses vaccines: A study of pediatrician attitudes. Arch Pediatr Adolesc Med. 2005;159:929-934.
14. AMA Council on Ethical and Judicial Affairs. The patient-physican relationship. Code of Medical Ethics: Current Opinions. 2010-2011 ed. Chicago, IL: American Medical Association; 2010:374.
15. Quill TE, Cassel CK. Nonabandonment: A central obligation for physicians. Ann Intern Med. 1995;122:368-374.