Hospital Impact: We've come a long way in engaging patients' families, but have a long way to go

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Imagine living back in the days before we had the ability to research diseases, symptoms or complex issues with which we were faced. Imagine going to your doctor’s office by yourself, not being expected to or for the most part not being allowed to question your physician; after all, he or she was your doctor. Your physician came up with a diagnosis and you did what you were told. If it worked, great; if it did not, well, they were still wonderful. Unfortunately, many people still feel that way.

Being a healthcare professional for more than 35 years, I have experienced healthcare as a patient, a spouse of someone with a terminal illness and a nurse. Have we come a long way from where we were 50 years ago? Absolutely. Do we still have a way to go? Even a stronger absolutely.

The idea of shared decision-making and encouraging families to be involved in care decisions is not something easy to teach or encourage. This new model takes additional time, manpower, skill and perseverance. The old way of the doctor being in charge made for much shorter appointments. If we incorporate families into the mix, we have additional people at the visit, additional people to talk to over the phone and additional questions that need to be answered.

Without discussing options with the patient and family, how would we truly know what the patient wants? Without listening to the patient there is no way for a physician to truly know what is right for that individual. While some patients want everything done for them when faced with a devastating illness, others just want to be made comfortable.

In my current role as a nurse working in a memory care center, my colleagues and I know is imperative that the family be involved in care decisions. Though dementia at a very early stage can possibly be handled in an isolated role with just the patient, as it progresses, a team approach is vital for the best care possible using a patient-centric model.

Can you imagine having a full visit and conversation with an individual with moderate to severe dementia, prescribing medications and not having a family member there to help carry out and share in the decisions? How would true informed consent be obtained without the inclusion of family members? How would correct doses of medication be administered? How would a patient’s daily needs be addressed? How would changes in symptoms be reported? The list of “hows” could go on and on. No one can do it alone.

Really learning how to expand the old way of working only with the patient and allowing the circle of care to grow is not easy, but is imperative for the best outcome. Like the old Virginia Slims ad said, “you’ve come a long way, baby.” We have indeed, but we are not there yet, and have a long way to go.

Sherri Loeb has been a healthcare professional for 35 years. She has extensive nursing experience, having worked for many years in multidisciplinary areas as a staff nurse at Northwestern Memorial Hospital and NorthShore University HealthSystem. Sherri is currently serving in a combined role as a registered nurse/research coordinator for the Advocate Lutheran General Memory Center in Park Ridge, Illinois.