Bradley A. Warady, MD, Director, Division of Pediatric Nephrology, Children’s Mercy Kansas City
When I started practicing medicine more than three decades ago, it wasn’t uncommon for a doctor to tell his patient – this is what you need to do to get better- and assume that the directive would be carried out. There wasn’t a two-way conversation or feedback from the patient and family that was taken into consideration when devising the treatment plan. But times have changed. Now, with an increased emphasis on family engagement and the doctor (healthcare team) – patient relationship, and acknowledgement of the importance patient and family input has on medical decision making, a new and better treatment paradigm is taking shape.
Practical Management Recommendations
Families can play a critical role in determining optimal treatment recommendations by sharing aspects of their everyday lives with healthcare team members and prompting management decisions that have the best possible chance of being successful. The information to be shared can address a variety of issues. Does the child live in a one or two -parent household? Do the parents work at night or during the day? What is the school and after school schedule of the child? All of these factors and more often come into play. If this information is not shared with providers, patients and parents may leave their physician’s office with the best intentions, but in reality they can’t carry out the recommendations. The medical process, especially as it pertains to complex pediatric care, needs to incorporate recognition of the demands that families encounter each and every day. Patients and families should be encouraged to share those demands.
This type of individualized care isn’t easy. It takes work and commitment from both sides. But once families and providers agree upon a treatment plan which can realistically be implemented, the benefits of the time spent become apparent and families soon recognize the healthcare team’s commitment to work with them as partners and not merely as patients or even “customers”.
Surveying Patients: Why Feedback is Important
One of the ways we obtain feedback from our patients and families in our Division of Pediatric Nephrology, is by regularly evaluating their satisfaction with the care we provide every time they leave our clinic. We ask if we have met or exceeded their expectations. Patients and families should feel free to share their opinions when given the opportunity as the information they provide not only helps us learn what we’re doing right, but it also can highlight issues that require attention to improve the care that we provide.
Embracing The Patient’s Perspective in Health Care
The goal to continually improve the provider-patient relationship isn’t exclusive to Nephrology. Appreciation of the challenges that patients and families are confronted with and the need to actively partner and communicate with one another to achieve the best possible outcomes is a practice philosophy that should be embraced in all of areas of health care. Providers need to make every effort to actively engage children and their families, since they so often can contribute to the solution for problems that exist. At the same time, families need to recognize how much the healthcare team values and depends on their input. Tackling challenges and generating answers together helps overcome obstacles and positively impacts care.
It takes a multidisciplinary team of doctors, nurses, psychologists, dietitians, pharmacists, Child Life specialists, social workers and others working together to provide the best possible care to kids with complex disorders. Patients and families may not be used to being asked by their providers to be members of that team and to help determine strategies that work. Thankfully, that paradigm is changing.
Advocacy in Action 