The Case of Gabriela Rivera
As a family physician, it is difficult for me to read the case of Gabriela and her family without wishing they were cared for by one of my colleagues. I don't know if the story would have evolved differently if a family doctor had been involved, but I'd like to think so. Not that Family Medicine is God's answer to the U.S. health care crisis all by itself, but perhaps some of the breakdown between the Riveras and their medical providers might have been avoided if their care had involved at least one person who knew them both as individuals and as a family.
Within the general context of a Puerto Rican family engaging a predominantly Anglo health care system, three themes stand out to me.
Communication between doctor and patient is not just a matter of sharing information; it is part of treatment. In fact, one of the foundations of Family Medicine is the use of the doctor-patient relationship as a therapeutic tool. Family physicians Moira Stewart, et al., describe six interactive components of a patient-centered doctor-patient relationship: 1
- Exploring both the disease and the illness experience
- Understanding the whole person
- Finding common ground regarding management
- Incorporating prevention and health promotion
- Enhancing the doctor-patient relationship
- Being realistic
Unfortunately, it does not appear that much of the communication with the Riveras was patient-centered, beginning with Gabriela's diabetes care. "She met once with a nurse who advised her on diet, exercise, and weight control, but Gabriela has found it difficult to adapt her traditional tastes in food and her lifestyle…" Once? Are you kidding? Helping patients face and manage a chronic illness like diabetes requires patience and perseverance. While some aspects of Gabriela's situation are culture-specific - such as her diet - many are not. Motivating patients to get exercise, learn dietary principles, check their blood sugar with a home glucometer, take their medications correctly, and take responsibility for their chronic illness is difficult in all cultures. Nowhere in the presentation of this case is it suggested that Gabriela's medical providers explored her illness experience, tried to understand her as a whole person, sought common ground regarding management, or tried to implement any of the other components of the patient-centered clinical method. For example, simply noting, "It's often difficult to follow to a diabetic diet and to get exercise. How's it going for you?" might have helped. The sad part of this is that if Gabriela and her physicians had done a better job of communicating with each other about her diabetes, and her sugars had been better controlled years ago, she might never have developed renal failure and this whole mess might have been avoided.
Compliance - or, more accurately, noncompliance (or noncooperation)- is a major issue in medical settings. Doctors are frequently frustrated by patients who are "noncompliant" - i.e. patients who do not follow their physician's prescribed course of action. Noncompliant patients waste our time; they waste other patients' time; they waste medical resources that could benefit other patients who do follow directions; they drive up the cost of health care for everyone. Estimates suggest that between 10 to 20 percent of all medical appointments are not kept; 30 percent of prescriptions are not filled; and 50 percent of patients put on medications for chronic illness fail to take their medications as prescribed.2While one might think that physicians who work at public-sector clinics would be especially compassionate and understanding about the difficulty of following medical advice, this is not always true. Public sector physicians frequently work for less money and in more difficult conditions than their private sector colleagues. Their patients often have multiple, complex psychosocial and medical problems for which they receive care at little expense to themselves. Why can't they just follow directions?
Many of the difficulties with noncompliance may be addressed with the patient-centered clinical method. The more that medical providers are able to communicate and connect with their patients and see things from their patients' point of view, the more they can work together with their patients to develop mutually-acceptable action plans. Physicians and other health care providers frequently have difficulty accepting the fact that just because someone comes to us for help doesn't mean that he or she will accept and act on everything we say. (As an aside, parents, teachers, legislators and others in authority often have the same problem.) We forget that these other persons have their own ideas, their own values, and their own plans in addition to their own set of barriers impeding the acceptance and implementation of what is recommended to them.
One of the most common reasons for patient noncompliance is simply not being ready to change. Patients may not fully believe what they are told because the information doesn't fit with their previous understanding or experience; they may not have the cognitive ability to comprehend the information; they may have the innate cognitive ability but have not yet acquired the education or language skills to understand the information that is presented; or they may have underlying behavioral or psychiatric problems that prevent them from changing. Addressing noncompliance must start with assessing these barriers to readiness, acknowledging that family, culture, and upbringing influence all of them.
Other common primary barriers to compliance include transportation issues, financial issues, and time issues. If patients can't get to care, can't afford it, or don't have time for it, the care won't happen. Sometimes, these are relative barriers; i.e. they are barriers only insofar as they conflict with other patient priorities and choices. A family in a rural area may live 20 minutes from care, have only one car which is needed by another family member for work, and have no access to any other means of transportation. For patients on a small fixed income, even $5 may keep them from doing something of necessity or of significant value to them. And the time it takes to get care-perhaps having to go across town on a bus - may keep them from other personal or family obligations. The point is, unless these barriers to care are identified, they cannot be addressed. And whose responsibility is it to discover these issues? While it is a two-way street, I believe it is the medical team's responsibility to explore the issues and barriers leading to noncompliance and to develop mutually-acceptable approaches to overcome them. Patients may not understand the consequences or the severity of the problems that noncompliance causes, or they may simply be too embarrassed or guilty to acknowledge these barriers on their own.
In the case of Gabriela and her family, there are several instances of noncompliance: Gabriela's inability to control her diabetes because she is not ready to follow diet and exercise instructions and because she cannot afford to take medication; her reluctance to discuss her headaches, cough, shortness of breath and insomnia with her physician; and Marcos' inability to face his own health problems of drinking and diabetes. Like the communication issues discussed previously, if these compliance issues had been handled differently earlier in her care, perhaps Gabriela's problems might not have developed; or if they had developed, perhaps there would at least be more trust and better dialogue between the Riveras and the medical team now. Did anyone actually bother to talk to Gabriela about her difficulty following the prescribed diet? I have to think that, given the population of New York City, there is a public-sector Puerto Rican-savvy dietician or diabetic educator somewhere. Did Gabriela feel listened to when she went to the clinic so that she might be more open to presenting new symptoms as they arose? Was Marcos simply told that he had a drinking problem he needed to control, or did someone actually talk to him about his drinking, its effects on his diabetes and his general health, and about how to handle the relationship between his alcohol intake and his social life? Did anyone consider having Marcos meet or speak with other 45-50 year-old Puerto Rican men with diabetes - God knows there must be plenty of them in New York who hate needles just as much as he does - so that he knows he's not alone with this problem? Sure, Gabriela and Marcos were noncompliant…but what a cop-out.
Medical decision-making capacity is the term used to describe a patient's ability to consent to a treatment in a specific situation (unlike competence which is a general legal designation made by the courts). Psychiatrists Thomas Grisso and Paul Appelbaum3 define capacity as having four elements:
a patient's ability to understand relevant information about his/her situation
the ability to appreciate what that information means for him/her in this situation
the ability to reason with that information
the ability to express a choice about what he or she wants to happen
Family Medicine educator Jeffrey Spike4 believes that the ability to reason with information is too subjective a standard. (Who decides whether a patient's reason is good enough or not? If a patient simply disagrees with his or her physician, does that demonstrate a lack of reason?) Instead, Spike believes this element should be replaced by the ability to consider information and make a choice that is consistent with a patient's values and past health care choices.
In Gabriela's case, how do Drs. Johnson and Parker know that she lacks the capacity to guide her care? Hopefully, they attempted to speak to her via an interpreter in order to assess her ability to understand, appreciate, and consider information and express a choice. Did they use appropriate language with both Gabriela and her family, avoiding medical jargon and checking to be sure that the information they provided was understood? Did they ask questions about her values and her past health care choices - at least pertaining to her diabetes? Dr. Johnson "speaks, in English, with Marcos, Maria, and Cecilia. Addressing all three of them equally.…" While it is admirable to include 15-year-old Cecilia in the conversation given her close relationship with her grandmother, addressing them equally assuredly angered Marcos. Most likely, Dr. Johnson believed that Marcos' "heavily accented English" meant he might not understand everything. If Marcos didn't trust medical professionals very much before this, he certainly won't trust them now.
Like compliance, capacity is another area where communication and patient- and family-centeredness is critical. Assume for a moment that because of her clinical condition in the ICU, Gabriela does not have capacity. Dr. Parker and the nephrologist appear to do a good job of meeting with Marcos and Maria early (often this kind of information sharing doesn't happen for days) and discussing what they believe to be the most important information about her situation. Still, one wonders what kind of language they used. Did they avoid medical jargon? Did they check with Marcos and Maria to be sure they understood what they were being told? Giving information indiscriminately and giving too much too soon can cause more harm than good. Why even bother to talk about a kidney transplant at this point? For that matter, why talk about long-term dialysis before discussing the possible need for short-term, emergent dialysis? Up to a day and a half ago, Gabriela led an enjoyable, productive life; now it appears her doctors want to send her off to hospice to die.
If Gabriela is unable to participate in her care decisions -and assuming she doesn't have a Durable Power of Attorney for Health Care appointing one specific person to be her health care agent - Marcos, as the son who lives closest to her and sees her frequently, is the appropriate family spokesperson. However, Marcos may very well want to speak with his five siblings about their mother's condition before doing or deciding anything. In my own experience, Latino families rarely complete advance directives and rarely rely on just one person to make difficult decisions, instead preferring a "family consensus" style of decision-making for critical issues that takes everyone's views into account. In Gabriela's case, even if Marcos is able to understand, appreciate, and consider the information given to him by Dr. Parker and the nephrologist, it is not clear he has the ability to speak for his family at this point and thus actually lacks one of the key elements of capacity in this situation. Did anyone on the health care team consider this issue and suggest to Marcos the possibility of a more inclusive family meeting - even if by conference phone call - to talk about Gabriela's condition and medical decisions?
While there are a number of other issues that could be discussed in this case - the concept of futility, the goal(s) of medicine, the Latino concept of respeto, the role of faith, and the surrogate decision-making standards of "best interests" versus "substituted judgment" among them - the three themes of communication, compliance, and capacity stand out as areas needing attention in Gabriela's care. Leadership requires mutual trust and respect and a felt connection between the leader and the person(s) being led to be successful. Medical leadership is no different. Would a family physician who used patient-centered, culturally-contextual communication skills have made a difference in this case? Maybe; maybe not. But I'd sure like to think so.
1 Stewart M, et al. Patient-Centered Medicine: Transforming the Clinical Method. Thousand Oaks, California: Sage Publications; 1995.
2 Derbin K, Perkins A. Noncooperation. In: 20 Common Problems in Behavioral Health; DeGruy FV, Dickinson WP, Staton EW, eds.. New York: McGraw-Hill; 2002.
3 Grisso T, Appelbaum PS. Assessing competence to consent to treatment: a guide for physicians and other health professionals. New York: Oxford University Press; 1998.
4 Spike JP. "Assessment of decision-making capacity." In: Reichel's Care of the Elderly, 6th ed. Reichel W, et al., eds. New York: Cambridge University Press, 2009.
MARC TUNZI, M.D., is associate director of the Family Medicine Residency Program at Natividad Medical Center, Salinas, Calif., and is associate clinical professor of family and community medicine at the University of California, San Francisco, School of Medicine. After graduating from Santa Clara University, he received his medical degree from the University of California, San Diego, School of Medicine and completed a family medicine residency with the University of California, San Francisco, Fresno-Central San Joaquin Valley Medical Education Program. He holds a Certificate in Health Care Ethics from the University of Washington and has served on the Natividad Medical Center Bioethics Committee for fifteen years.