Diabetes and the Discordance Between Families and Healthcare Teams
A new diagnosis of diabetes presents many obstacles. One significant roadblock that is often not discussed is discordance between families and healthcare teams. The manner in which resolution is achieved is a potential indication of how this special relationship will be developed over the years. It is my hope that you develop a mutually collaborative relationship with your healthcare team. Sometimes, however, despite good intentions, it may be prudent to start fresh with a new provider (or team) who may provide an alternative approach. What are my top 10 issues that provoke conflict within the diabetes team/patient (parent) dyad? And more importantly, how does one compromise (or not) to facilitate a working relationship?
My top ten:
- ability to receive medical attention in a timely manner
- location of medical team and facilities
- personality incompatibilities between physician/CDE and family
- financial constraints (insurance issues) and/or prescriptions
- poor medical communication between the diabetes team and family
- inability to compromise and negotiate a treatment plan
- roadblock in the direction of care, resulting in perceptual differences
- lack of empathy and understanding by provider and healthcare team (agenda of diabetes team does not match that of family/patient)
- inability to discern body language and hidden agendas between healthcare team and family
- unwillingness of family to take advantage of individual diabetes team members and their expertise during times of difficulty
These issues are not presented in any particular order, and they may emerge and reemerge during any period of the healthcare team and family relationship. As I have related in the past, diabetes is a "family" disease and it is important not only for the child/teen to trust his team, but for the family as well.
- Be practical: If your child or teen cannot be accommodated by the diabetes team/ medical facility in a timely manner at diagnosis, then it is time to look elsewhere. It is essential that any child/teen with new onset type 1 diabetes be seen in an emergent manner (this does not necessarily apply to new onset type 2 diabetes. But if one is not sure as to which form, then be safe). The medical center/university/practice must have an appropriate diabetes educational curriculum and trained personnel. ADA recognized programs are ideal, but not essential. Hospitalization is not always required, but the teaching of survival skills is mandatory. After diagnosis, timeliness of appointments is problematic for all diabetes teams. Generally, the numbers of programs/diabetes teams are often situated at major universities/Children's hospitals due to the need for comprehensive care. Appointments every three to four months are strongly advised in the care of type 1 diabetes.
- Location, location, location: Because of the relative scarcity of programs, travel becomes a factor considering that appointments will be at least every three to four months, in addition to unscheduled visits (for diagnostic testing/procedures/further education, etc.) Large programs, such as ours, send a doctor/team member (such as a nurse, etc.) to our satellite clinics in the District of Columbia, Maryland, and Virginia. Despite Children's National Medical Center's seven locations, families still have difficulties in terms of scheduling, timing, and convenience. If the location is a source of conflict with every interaction and appointment, this issue eventually becomes a deal-breaker. Despite good intentions on both ends, convenience and lifestyle become paramount. Find a location that you and your family can live with.
- Personality is extremely important: Different providers have different styles for working with families and children. Examples of styles include the traditional authorative approach (do what I suggest), collaborative approach (working together to achieve a desired outcome), and the patient/family directed approach (the family determines the direction/course of treatment). Many healthcare providers use a combination of all three styles during the course of the therapeutic relationship. Using only one approach does not always serve in the best interests of the team/family relationship. As such, choosing the primary liaison (usually the MD or CDE) is paramount. Spend time with the team and work in the beginning, with different providers if you are not satisfied by your first encounter. Most practices have different providers from whom you may choose follow-up care. If you are not happy after several encounters, it is okay to see someone else. You do not have stay married to one particular provider if your needs are not being met.
- Financial Constraints/insurance issues: In today's economy, money matters. All insurance policies and coverage are not equal. Some practices refuse to take patients with certain insurance carriers because of the reimbursement rates. It is essential to find a diabetes team that is covered by your particular insurance plan. Several good strategies include a discussion with the diabetes team about which insurance plans are most encompassing in terms of the prescriptions that accompany the treatment of type 1 diabetes, as well as coverage of medical appointments. Open enrollment is a good time to make a change if you can. Paying out-of-pocket is not practical for most families, especially now.
NEXT WEEK: Issues 5-10.