When the Patient’s Family Wants to Be Involved in Care

In recent years there has been a special emphasis on getting patients more engaged with their own health and their own healthcare. But how do you respond, as a nurse, when a patient’s family member wants to be involved in caring for a hospitalized loved one?

These days, healthcare consumers are often advised to have a friend or family member act as an advocate during a hospitalization, taking on roles from making sure clinicians wash their hands to reading through any forms the patient is asked to sign and speaking up whenever anything seems not quite right. Patients who are too sick or medicated to advocate for themselves often see this as a frontline defense against medical errors.

If you’ve ever worked in a pediatrics unit, you know that parents of sick children tend to be very involved. Mothers and fathers know their child better than anyone else does. They may feel helpless when a child is suffering from an illness or injury and be reluctant to leave their child’s side, oftentimes spending the night in the hospital room. In pediatrics, family involvement is the norm. Oncology patients also tend to have friends and family members who take on the advocacy role and feel they are part of the journey. They may already be providing care at home, particularly if the patient is elderly.

Many patients have family members who are capable of providing some level of physical care and support and who want to do so during a loved one’s hospital stay. It makes sense to engage these family members at whatever level is appropriate, and it can help to prepare them for transitions of care. As hospital stays get shorter and patients leave the hospital sicker, these same family members may have no choice but to provide ongoing care at home, dispensing medications, changing wound dressings, or helping with personal hygiene. As a nurse, you can choose to view family caregivers as a valuable resource and a part of the care team, and to support their efforts to be engaged and involved.

At Johns Hopkins Hospital, nurses in the ICU worked with family members to find out what type of care activities they might feel comfortable participating in. This effort evolved into the Family Involvement Menu, a laminated sheet that describes care tasks the family could choose to get involved with. Some, like oral care, might require quick training from nurses. Other activities, like assistance with feeding, only require a willingness to help. In 2014, this concept was awarded the “Family-Centered Care Innovation Award” by the Society of Critical Care Medicine.

The University of Iowa Hospitals and Clinics is a leader in conscientious care. UI Hospitals and Clinics Nurse Practitioner, Kirsten Hanrahan, ARNP, DNP explains how UI Hospitals and Clinics approaches the matter:

By definition, Evidence-Based Practice (EBP) is ‘the process of shared decision-making between practitioner, patient and others significant to them based on research evidence, the patient’s experiences and preferences, clinical expertise or know-how, and other available robust sources of information’ (STTI, 2008).  Therefore care preferences are a part of EBP, not a one or the other option. At University of Iowa Hospitals and Clinics patients who are able to, identify a partner in care – a family member, friend or trusted other to help them to make care decisions. Patients and partners in care are engaged by clinicians in joint decision-making at ambulatory appointments and in daily bedside rounds.

Part of our role as clinicians is to understand and present the evidence in ways that helps patients and their partners in care to understand it and make informed decisions. An example of this is Chlorhexadine bathing. When presented as an evidence-based treatment to decrease their risk of healthcare acquired infections, patients are more accepting. We believe patients have the right to refuse treatments, but we also have an obligation to provide them with the best evidence and clinical expertise.   

Other initiatives to include families in care giving are being conducted around the country. Johns Hopkins also pioneered Project Emerge, an effort to make the ICU less intimidating to patients and their families. The idea was to redesign the ICU workflow and culture in ways that not only coordinate data for clinicians, but give a sense of empowerment to patients and family members. Now, a tablet computer at the bedside runs an app that includes the family involvement menu, listing ten daily care activities a family member might choose to get involved with. The app also allows patients and their families to ask questions, clarify treatment goals, and learn the purpose of each machine or monitor in the room.

As a nurse, you can have a positive impact on families by engaging them in the care of a loved one. Tips for incorporating a family involvement menu in your own unit are available online. Do you want to make a difference in the lives of your patients? Empower yourself with knowledge through an online RN to BSN or RN to BSN/MSN degree. American Sentinel University is an innovative, accredited provider of online nursing degrees, including programs that prepare nurses for a specialty in nursing education, nursing informatics, and executive leadership.