Define your role when a family member is ill, and then apply that experience in your practice.
Takeaways:
- Most nurses experience being the “nurse in the family” when a loved one is ill, which can be a struggle and an opportunity to learn and grow.
- When a nurse is caring for a loved, the nurse must articulate how his or her actions are grounded in the practice roles of professional nursing.
- Nurses can promote and improve their own professional practice when caring for a loved one with intentional, humble reflection and being open to self-healing.
My mother had experienced sudden-onset pulmonary edema after a complex cardiac procedure. I felt that her caregivers didn’t assess her accurately and acted on assumptions. We had previously negotiated very rough waters balancing her medications. The day after a transfer to a step-down unit, a well-intentioned but ill-informed provider stopped her cardiac medications, stating that “too many meds for old people often cause more problems.” This was done without consulting the specialists or communicating with her family. Within 24 hours, she was back on a ventilator in the intensive care unit. I was livid, a reaction interpreted by my kind, humble father as questioning the doctor’s authority and being haughty, a characteristic considered poorly in my family.
—Roberta Young
At one time or another in our careers, we become the “nurse in the family,” and sometimes we’re disappointed with our colleagues as we advocate on behalf of a parent or child. Other times, though, we’re in awe of the compassion and expertise we witness. Underneath it all may be turbulent emotions of love, conviction, and uncertainty mixed with our professional capacity as nurses to listen and react smartly while being held to unknown expectations.
Navigating this situation requires understanding nurse practice roles, defining your role with the family member, and learning from the experience. Taking these actions not only will help family members but also can help you cope with your emotions and improve your practice.
Nurse practice roles
In Relationship-Based Care: A Model for Transforming Practice, the authors define six practice roles of professional nursing: sentry, healer, guide, teacher, collaborator, and leader.
- Sentries watch over and protect others.
- Healers care for another’s body, mind, and spirit and help him or her improve health.
- Guides lead or direct another’s way through unfamiliar circumstances and possess intimate knowledge of the way.
- Teachers impart knowledge and help another learn a skill.
- Collaborators work cooperatively with others to achieve a common purpose.
- Leaders have the authority to act on behalf of others and possess the capacity to effect change and influence direction.
Family expectations frequently are diverse, hard to discern, and sometimes unrealistic. Nurses are tasked by the American Nurses Association’s Code of Ethics for Nurses with Interpretive Statements to promote health, ensure care in a dignified manner, and protect patient safety. This is hard work and may lead to conflict, feelings of failure or inadequacy, or being labeled as arrogant or a “know it all” by family members when you try to explain medical speak. Clarifying the inner conflict between your nursing and family roles and acknowledging that struggle to yourself and family members can enhance your ability to cope and your family’s understanding.
Your role as the nurse in the family extends beyond the high-risk, acute episodes of chronic disease exacerbations that become a reality with older family members. You’re also called upon to assist in ongoing care planning and coordination.
My mother was a retired nurse and very reluctant to delegate her health decision-making, even though she knew that her worsening cognitive functioning required her to have a safety net. Over her later years, my role encompassed teacher, guide, and collaborator. As her physical and mental status deteriorated, I was forced to navigate a shift to sentry and leader. The decisions I made as the daughter/care partner with ultimate responsibility for moves to assisted living, and subsequently memory care and hospice, were the most difficult of my 37-year nursing career.
—Terry Anderson
Take action
The situations described here are no doubt familiar to nurses across the country. And although the role of nurses in the family probably won’t change, what can change is how you accept the role and take action to prepare yourself to be the best advocate for your family. Positive actions include defining your role and learning from the experience.
Define your role
Preparing before acute situations occur makes it possible to implement a plan quickly and efficiently. Start by defining for yourself and your loved ones how you might practice each of the six professional practice roles as the nurse in the family. Your family may have an idea of what you do as a nurse, but they may not understand how you intentionally think and act. Explaining these processing and decision patterns can improve communication and help family members become more informed caregivers.
Determine the touchpoints or decision moments (for example, death of a spouse, fall or medication error, move from home, or change in financial/insurance situation) when roles might shift or be expanded. And be clear about your expertise. In some areas, you’re fully qualified to be the “know it all,” but in others you may be exploring options and needs along with the rest of the family. Keep the lines of communication open with the person receiving care and others (family members and healthcare team) involved.
Learn from the experience
Being the nurse in the family is exhausting and stressful, but it’s also an opportunity to learn empathy and compassion for the nurses who are family members and advocates of future patients you’ll care for. Understanding that nurses as family members are navigating a slippery slope with the extended family will create a path for collaboration. Include these nurses in care planning and implementation to enhance confidence in their decisions, which in turn can improve trust within the family and trust in your care.
The experience of being the nurse in the family also can be a catalyst to examine and improve your own practice. Ask yourself these questions and answer honestly:
- Was there a time that you let your assumptions cloud your assessment?
- Was there a time you received a report that labeled the patient in a poor light and you acted on that view rather than your own professional assessment?
- Was there a time that you skipped an intentional pause to learn the patient’s lived experience in their illness, which led to inappropriate treatment?
To grow professionally and continue to hone your practice, you have to be willing to ask yourself the hard questions and then humbly listen and improve. Patients, families, and your value as a nurse deserve this. Out of love, you care for your family with a heart and mind that wants to do the right thing. The experience also can make you a better nurse.
Roberta Young is a nursing and healthcare consultant in Fargo, North Dakota. Teresa (Terry) Anderson is an independent nursing practice consultant and chief nursing officer at Nobl Health in Lincoln, Nebraska.
References
American Nurses Association (ANA). Code of Ethics for Nurses with Interpretive Statements. Silver Spring, MD.: ANA; 2015.
Koloroutis M, ed. Relationship-Based Care: A Model for Transforming Practice. Minneapolis, MN: Creative Health Care Management; 2004.
4 Comments.
Thank you for this honest reflective article. Having recently supported my parents in my father’s last days on earth, I had to carve out time for myself and really consider the role I needed to be as both nurse and daughter. That and setting time aside to grieve his eventual passing in advance helped me so much. During his final hours I was able to let go and let friends and the hospice nurse step in so I could be 100% the daughter.
When my healthy father was suddenly diagnosed with a glioblastoma last summer, there were many decisions to be made at a rapid pace with various emotions running rampant, but the most difficult part for me was to learn to separate being a nurse/caregiver, and helping translate medical terms and facilitate decisions, to then transitioning to simply being a loving daughter, and stepping away from the nurse role to enjoy my father’s final days as his daughter. Yes, I wanted to be his caregiver, but it was nice to have some hired help to provide the hands-on caregiving part so I could take a step back and maximize those final father-daughter days.
As the sole nurse in the family for many years, I sometimes felt burdened, not by my family’s need for information and clarity, but by my “failure” to be an expert on every medical calamity or malady. Once I let myself off the hook, and offered responses in terms of, “I’m not a critical nurse, but I would be concerned about…”
And, “I would consider asking these questions…”, I could feel comfortable in guiding them to one potential course of action.
Based on my experiences, I would suggest a role is missing; that of “interpreter”. I mean this in terms of translating provider messages that may be crafted in compassion but lack clarity. When my father was hospitalized for respiratory failure, the ICU physician explained,
“We think it’s time to transfer Robert to the palliative care unit. What do you want us to do if his heart stops?” Translation — “he’s dying. We’ve done all we can. Now we want to keep him comfortable.”
It was necessary but painful for me to deliver this message, especially to my mother. Months later, Mom still blamed the nurses because “he didn’t get better”. She expected to take him home, not to bury him.
I have been there and feel that because I’m the youngest of the family, how could I really know what was good for my family member.
Patience and listening to their concerns helped them understand that having me in the mix was a benefit and not a threat to their judgments.
We still have conversations that seem to go nowhere but at least we are speaking about how to approach these delicate decisions.