Simply stated, pre-hospital family-centered care is the art of treating patients as you would like to be treated — emotionally, physically, and medically. A more formal definition is “the systematic approach to building collaborative relationships among EMS providers, their patients, the patients’ families, and other healthcare professionals, which in turn promotes quality EMS care, community health, and safety.” It provides focus to ensure the patient and their family members are informed about their condition, the therapeutic pathways being taken, any prognosis, and options to care within the EMT’s or paramedic’s scope of practice.
There is also a strong emphasis on the EMS provider utilizing the patients’ or their families’ knowledge of relevant medical conditions, histories, and treatments, and knowing information about the other members of their health care team. This type of care encourages family members to be active guests during all procedures, including full resuscitation. This collaborative approach provides an environment that promotes higher quality care and ultimately makes the EMT’s or paramedic’s job easier and more rewarding.
While these ideals may seem simple and theoretically easy to execute, it is possible to overlook or neglect them in times of stress or as tasks become more routine. It is important to remind ourselves why holistic patient treatment is so important, and take a moment to consider the following advice to help us provide such treatment at the highest level.
Identify yourself to the patient and his/her family. What impression would you have if someone came into your home, said nothing, and started telling you how they were there to help? Courtesy is a major part of professionalism and of pre-hospital family-centered care. Ask the child what his or her name is by inquiring, “What name do you like to be called?” Be cautious in using slang or regional terms of endearment.
You may be from an area or family where calling someone “sweetie” or “bud” is acceptable, but that may not hold true for everyone. Be courteous. Also ask the child’s parents what they prefer to be called. It may be Bob or Isabel, or it may be Mr. Waddell or Ms. Isabel. Show respect in your communications and your actions will demonstrate respectful concern for the care being provided.
Think about how you would like someone to communicate with you. Years ago I had the privilege of meeting Dr. Patch Adams. One of the first and most memorable points of that meeting was when he introduced himself — he shook my hand and looked straight into my eyes. I still remember feeling that I had not only known him for years, but that I was the most important person in his life that day, even though the reality was that we just met. The simple act of looking directly at me and addressing me made all the difference. I know that nearly 2000 others in the auditorium felt exactly the same during their brief moment of looking back into his eyes. In addition, communicate with your team. Even in a critical situation where knowledge is displayed and skills are performed, the silence of synchronized paramedicine sometimes becomes the foundation of disgust from the child or parents.
Explain what you’re doing and what you expect the outcome to be. Explain to the two-year-old that while it will be uncomfortable, you need to put a special straw into his arm, to make him feel better. Ask him if he wants you to put the IV in her right or left arm, and promote patient-focused participation. Ask him to hug Mom or Dad really tight and you’ll tell him when you’re done. Don’t lie and tell him it will feel just like a mosquito. A 27-ga. butterfly doesn’t feel like a mosquito; it feels like a piece of cold steel piercing the skin. Be honest and be considerate. Let the child play with your CLEAN stethoscope or other equipment. Let him listen to your heart and lungs. Remember, he may be the paramedic treating your AMI in 30 years, so you are obligated to make sure he gets a proper start on his medical education.
Honesty is a virtue that has application in EMS. Honesty with your patient is a hallmark including the admission of saying, “I don’t know” when you don’t. Don’t leave the child or the family with nothing; assure them everything that can be done is being done. Communicating with your patient makes it easier to express appropriate levels of empathy, sympathy, and support.
Once the decision has been made to transport, continue the family participation in the care decisions by allowing one of them to accompany the child in the ambulance to the hospital. The family member can also be a useful resource of knowledge about the child and how the child responds to procedures, medications, or circumstances. Be sure to collaborate with the family in any decisions that need to be made about destinations. Some children with extensive special needs may request a specific hospital simply because that is where their specialists and medical records are. Transporting a child with special needs to a facility unfamiliar or unprepared for the magnitude of the patient can be the cause for delayed or inadequate care. Continually communicate with the child and the family members to assure they are in the “information loop.” Be sure to wish the child and their family well as you transfer the child care to the hospital staff.
In recent years, the concept of family presence has been studied and the outcome has demonstrated a positive effect on both the surviving patients and their family members. In the mid and late 1980s, Dr. Frank Martorano, a pediatric intensivist from Denver, conducted studies (unpublished) examining the effect of family presence during pediatric resuscitation. A true pioneer in the subject of family-centered care, Dr. Martorano found that most families appreciated being with their loved ones even if the clinical outcome was less than favorable. He also found that the mourning and healing process benefited as well. When asking mothers who lost a child and weren’t allowed to be present during the resuscitation what their greatest regret or complaint was, two of the primary answers given were:
1) “My baby died alone (regardless of the child’s age).”
This was stated despite knowing that more than five health care professionals were actively and simultaneously involved in the resuscitation.
2) “I wasn’t able to say goodbye.”
Again, this was stated despite the fact they were allowed to spend time with the child after the resuscitation was terminated.
A number of his colleagues expressed concern that the potential for litigation would increase. Martorano found this to be contrary to the facts and additionally found that most families — especially the mother — expressed a heightened appreciation for the efforts the resuscitation team put forth. Despite errors and the occasional use of less-than-appropriate language, gratitude was frequently expressed as, “Everything that could be done, was.” The number of legal actions filed against the hospital and staff decreased.
As first responders, we already have a lot on our minds as we assess patients, provide treatment, and ensure safety while doing so. However, the intangibles – courtesy, respect, and clear communication – can be just as important as the efficient execution of a critical intubation.
