Family support in patient care
Communication with and inclusion of family members is a topic in medical education that has not previously been a significant focus. Hartmann et al. [2] noted that training medical students and physicians in communicating with families is an essential task for the future. Families are increasingly involved in patient decision making. Similarly, family dynamics is usually not addressed in EMS education, particularly the differences in ethnic groups. Overall, EMS trainees rarely receive in-depth information regarding various cultural beliefs about health and illness, the sick role, and attitudes about health care providers.
Emergency medical services students have been taught almost exclusively what to do to patients, suggesting that all are in extremis. However, patient care involves more than medical knowledge and technical expertise. Talking to patients has served the sole purpose of accessing the history and chief complaint and then for advising the patient of procedures that would be performed. Establishing rapport and reaching common ground were absent in the repertoire of yesterday’s paramedics and EMTs. EMS courses similarly lacked information regarding communication with families. Providers were taught how to assertively inform family members that a loved one had died, but otherwise, interacting with and incorporating the family into patient care decisions has been limited to enlisting their help in convincing an unwilling patient who needed to go to the hospital or querying about history and medications in the unresponsive patient. EMS should now adopt trends seen in other medical settings. “The core features of family-centered health care are the acknowledgment of the unique strengths, resources and needs of all family members, and the emphasis placed on partnership between the patient, the family, the doctor and other service providers” [1]. No longer is the emphasis upon what is done to the patient, but what medical personnel can do for the patient, family, and other caregivers, all working as a team.
The threshold for accessing EMS is lower than for other medical professionals, excepting perhaps family physicians and/or the emergency department. EMS may be the first and only contact with a medical professional for a variety of chronic and/or acute patient misfortunes and therefore is considered one component in the health care safety net [3,4]. Even so, EMS providers tend to “scoop and run” and historically have not established short- or long-term relationships with their patients, families, and/or caregivers. However, as primary care providers have discovered, engaging the patient’s family may be of assistance in several ways. First, it may engage those who can provide support to the patient, whether by monitoring diet and adherence to a medicine regime, serving as watchdogs for specific signs and symptoms of a worsening condition, or by creating a safer, more pleasant, and healthier environment for the patient. Second, acknowledging the family establishes trust and exhibits good will in caring for the patient. One of the normative cultural values in the Latino culture is personalismo, which refers to warm, personal relationships, including those expected with the physician or medical provider [5]. Finally, family-centered involvement solidifies the continuum of care and creates a cohesive unit whereby strength is achieved through larger numbers of individuals focused upon the patient’s best interest.
In 2010, 56.7 million people or 18.7% of the US population were living with disabilities [6]. In addition to coordination of care between medical providers, coordination of care should also include the families and other caretakers of these patients [7]. EMS providers are frequently dependent upon families and caretakers of patients for information and history and occasionally must deal with multiple family members, not all of whom necessarily agree on their family member’s care or who may not be equally informed. Coordination of patient care often requires medical personnel to interact with more than one family member, particularly for pediatric or impaired patients. Often, the EMS providers’ management of the patient includes the decisions of the medical power of attorney. As a member of the health care team, EMS providers must work to improve communication in their arena of care. Even in an emergency setting, use of appropriate principles of interviewing and conversation with patients and their families can guide the EMT and paramedic toward relevant clinical decisions.
For those patients who are technology dependent or have special needs, and for those with chronic or terminal illnesses being cared for at home, family members provide a rich resource of information regarding that which is normal for their loved one, including level of consciousness, color, respiratory status, or vital signs. Increasing numbers of patients are being cared for at home rather than in institutions, and their caretakers are taught how to perform skills and troubleshoot devices such as tracheostomies, IV pumps, urinary catheters, and ventilators. In addition, implanted devices such as defibrillators, pacemakers, and left ventricular assist devices and procedures such as peritoneal dialysis are increasingly encountered by EMS providers responding to 9-1-1 calls. Although in-depth knowledge of the technology that supports these patients may be out of the scope of training for the EMT and paramedic, he or she should rely upon family members or other caretakers for assistance in managing these devices and/or patients. As an integral member of the health care team, the EMS provider should not view requesting assistance or information from the patient or patient’s care provider regarding unfamiliar technology as a point of incompetence, but rather as an overlap in the team approach to patient care.
The inclusion of family members in patient decisions and care is paramount to improving a patient’s health. However, the EMS professional should proceed cautiously while gathering patient information from the family or caregiver. Family members may insist that they are familiar with the patient’s recent activities or medical history, and may possess inaccurate or irrelevant information for the current emergency problem, thus incorrectly shaping the paramedic’s diagnosis and treatment [8]. Therefore, the EMS provider must filter incoming information and temper the influence of family members in order to avoid tunnel vision. Finally, a dispute between the patient and some or all family members may create friction and disagreement at the scene. In this setting of conflict, the EMT or paramedic must make sense out of the dynamics, avoid taking sides, identify each person’s agenda, and orchestrate the scene in order to reach common ground [9].
Even with family present, a patient has rights of autonomy, confidentiality, and privacy. A frustrating situation for EMS providers includes the scenario where the family adamantly directs the EMS crew to treat and/or transport their loved one while the cognizant and competent patient refuses assistance. Furthermore, a patient may not want his health information or condition revealed to other family members. Adolescent patients may not wish to discuss their sexual or substance use histories in the presence of parents. Even pediatric patients may not admit the truth surrounding an incident for fear of punishment. A family member, just because of his or her relationship with the patient, is not automatically entitled to medical information regarding an ill or injured spouse and may not understand the legal ramifications involved.
Conversely, the family may not want the patient’s condition revealed to the patient him- or herself, such as in the case of late-stage cancer, as seen in some Asian, Jewish, Italian, Navajo, Pakistani, and Hispanic communities [10] where cancer is seen as a curse and a social stigma [11]. Many cultures value family-based decisions over autonomy for management of the patient, although patient autonomy is currently the prevailing norm in the United States. Familismo in the Latino culture is loyalty to the family and priority over the individual [5], a viewpoint seen also in Middle Eastern and Japanese cultures [12], among others. EMS providers should consider this cultural viewpoint when family members are present during patient contact.
Despite the maturing of the EMS profession from its modern beginnings in the 1960s, this cohort remains mostly Anglo and male. Recent demographics for EMS providers in the United States include 75% Caucasians and 72% males [13]. In contrast, by mid-century, Caucasian European descendants will begin to constitute a population minority [14]. The current population majority in the United States is shifting toward a diverse mix of individuals from various cultures, ethnicities, races, and faiths.
Understanding family relationships forms the foundation for integration of family into patient care. Family dynamics vary depending upon culture, ethnicity, socioeconomic and educational level, and even geographical location. In some families, love is synonymous with dependence and closeness while in other families, love is expressed by allowing members to be independent [15]. The presence of family at the emergency scene simultaneously presents a unique opportunity and a challenge. Many EMS providers have felt frustration when attempting to interview and assess a patient while a roomful of chattering relatives looms at elbow’s length and answers questions for the patient. Such behavior may result from the patient’s culture and/or upbringing. Most patient-to-EMT contact occurs within a personal and intimate distance of 4 feet, which is the norm for the middle-class Anglo culture. However, other cultures and ethnic groups favor a much closer personal space, which may unnerve the EMT. Large, extended families such as the Roma (Gypsies) may cluster around the patient at arm’s length to provide support [16].
Family dynamics as well as health beliefs are affected by culture. Paternalism exists in many Middle Eastern and Latino cultures, and Asian and Romani cultures revere their elders [10,16]. Therefore, the EMT may need to address the male figurehead or elder, while in certain matriarchal African cultures the oldest female may serve as the patient’s spokesperson. In situations relating to women’s problems, a female family member may be included in the history taking. The EMS provider should be aware that the cultural mores of a traditional Muslim female patient prohibit examination by a male medical provider.
Cultural competency refers to possessing knowledge and awareness of and respect for other cultures and ethnic groups [17]. An individual’s culture has a direct effect upon health beliefs, values, and practices. Culture also shapes patients’ and families’ confidence in and viewpoint of modern medicine and health care professionals. The EMS medical director can promote cultural sensitivity and competency by encouraging EMS providers of different races and ethnicities to disseminate information about their culture/race to the other providers along with appropriate continuing education, exposure to, and discussion of different ethnicities and cultural beliefs.
