Negotiating Your Health Care Needs

Reasons for negotiating with your health care team

Being told you may have celiac disease can be frightening and bewildering. You will need to confirm the diagnosis with an upper endoscopy procedure and intestinal biopsies. Once the diagnosis is confirmed, you must modify your diet and, to some extent, your lifestyle. Also, you will enter into the world of esoteric medical language, a new clinic with specialized nurses, physicians and dietitians, unfamiliar power structures, information overload, and a diagnostic / treatment system under the constraints of time and overwhelming service demands. You have to pay a different kind of attention to food and eating habits, and learn the meanings of the ingredients in products you buy.

There are several issues arising from the celiac diagnosis that might require negotiation among you, your family and supportive other people, and health care providers. How do you most effectively ask questions that are not yet clear in your mind? Who is the best person to answer your requests for different types of information? For example, questions about the specifics of the diet are best directed to a dietitian, where to buy gluten free products could go to someone at the Celiac Association, while your doctor can answer questions about the state of your gut. What is the best way to find out where you should be referred, and then get that referral? Where are the best sources of information about obscure medical conditions that accompany celiac disease? The list goes on.

Having the ability to negotiate with the experts can reduce the feelings of fright, and empower you to participate fully in your own good health management. Managing your way through the maze of medical systems requires negotiation skills that you likely already have, but may not have used in this way. In this overview, we will consider what those skills are, and the different roles people have in negotiation.

Identifying negotiation skills

Negotiation is a specific type of talk designed to get an exchange. If there is no exchange in mind, the talk is not a negotiation. ‘Give me money’ is a demand. ‘If you don’t do it…’ is a threat. Types of talk include, for example, aggressive, pleading, assertive, threatening, humble, interest-based, positional, and more. Honing your negotiation skills requires the development of strategies about how you talk to get the exchange you want.

Think of a negotiation you have experienced. It might be someone wanting privileges, or trying to convince someone for some reason, or buying something for a better price, or any situation in which you had a conversation with a goal in mind.

First, list the qualities or characteristics and techniques you and the other person used on each other that made a negotiation a ‘good’ experience. This might include such attributes as amount of respect, tone of voice, degree of open mindedness, and sincerity. Second, list the qualities or characteristics and the techniques you and the other person used on each other that made a negotiation a ‘bad’ experience for you. This might include such attributes as amount of respect, tone of voice, degree of open mindedness, and sincerity.

That’s right, the same characteristics of talk, depending on how you use them, can affect how a negotiation turns out. Remember that ‘good’ and ‘bad’ are subjective. What is a good negotiation for one person may be a bad negotiation for another person. For ‘good’ negotiations, did the other person take your feelings and needs and interests into account? Did you take theirs into account? In the ‘bad’ negotiations, did that happen? Would you welcome negotiating with that person again? How much would that person welcome negotiating with you again? Few people enjoy being made to feel accused, embarrassed, or ignorant. Most people appreciate honesty, appropriate questions that advance knowledge, and getting helpful information.

Once you have your lists of what negotiation skills give you ‘good’ or ‘bad’ outcomes, you have the basis for knowing what type of talk works for you in a negotiation, and also what types of talk you have found to be ineffective in getting your needs met. This makes sense in your personal negotiations and also when you are negotiating in a professional setting. Everyone has feelings, even professionals who are talking to you because it’s their job.

Role clarity

Be clear on everyone’s different role so you don’t get frustrated thinking someone isn’t giving you what you want. It might not be their job. Unless you have unlimited time with your health care provider, keep the issues to your top 2 or 3 that no one but he/she can answer. In other words, ensure you are negotiating with the right person.

  • Your role: unless you are a young child or dependent adult, you are in control of your diet and lifestyle; admit responsibility. A gluten free lifestyle will help frustrate everyone less, including yourself.
  • Doctors’ role: each physician has time and expertise limits. They are experts in diagnostics, not sociologists, dietitians, nutritionists, or counselors. They are there as experts in treatment, not as friends or personal trainers. Frame your questions appropriately in recognition of their limitations or you may both wind up feeling unsatisfied with the negotiation.
  • Clinic nurses’ role: often the first line of communication about a medical issue, they can provide advice or, they will discuss it with the physician and get back to you. For the most part, they take their directions from the doctors they work for, not from patients. If they state they have limits on what they can tell you, it’s likely because they have been given limits on what they can tell you.
  • Dietitian’s or nutritionist’s role: expert in instructing on the specifics of the diet, they can explain how you can contact food manufacturers, read ingredients listed, and do research on the Internet.
  • Social worker’s role: for financial concerns such as the cost of the gluten-free diet, a social worker can assist with information about financial support based on need. Celiac associations can provide information on tax credits you may be eligible to receive.
  • Pharmacist’s role: If you are on other medications, the pharmacist can determine if they contain gluten.
  • Celiac Associations’ role: able to refer you to lay counselors, support groups, gluten-free food sources in community, best pricing in community, latest research findings, and baking advise.
  • Family’s role: to be supportive not controlling. Putting them in the wrong is generally not helpful in problem solving. Be clear on what they can give and what you need from them so that you know how to ask for it.
  • Staff roles: they are very busy, and may just be there to get you in and out, not to hear your life story.

Tips for negotiating with your medical team

  • Know your condition so that your negotiation gets beyond general details of what the condition is about. To be taken seriously, do your research so that they see you take the issues seriously.
  • Differentiate between facts (the treatment of celiac disease and science of food) and behaviour (your healthy lifestyle, whether or not you cheat on your diet), and emotion (how fair or unfair you think things are). Then you will be clear on what concerns you are negotiating about.
  • Have a list of the questions you want to ask. Have your questions written out as simple, specific (not universal ‘what should I do’) language. Frame the questions to get yes/no or short answers if possible. Use words that spark interesting conversation. This may generate information you had not yet thought of requesting.
  • Go in with notes; take notes if you think you might forget.
  • Ask follow up or different questions rather than the same question different ways, hoping for an answer you like better the second time.
  • You have the questions, but s/he has scheduling problems, professional distance codes, specific areas of expertise, and relentless workloads. Respect those boundaries so you don’t add to their pressures. People negotiate more freely if they believe you understand their constraints.
  • Tell the receptionist when making the appointment if you have specific needs. Be prepared to politely state your case for what you want, for example, more time for questions, or a referral. Acknowledge s/he is busy, and show your appreciation by respecting her/his boundaries.
  • Allow yourself to be reassured if the answer you get is reassuring. Acknowledge if you are anxious or apprehensive; name the emotion so your doctor doesn’t think you are just challenging the information, since people – even professionals -do not react well to being challenged.
  • Be polite and persistent.

Conclusion

Health care practitioners are professionals who want to help, and to have their knowledge respected. Think about who the best person on the medical team is so that you are asking the appropriate questions to the right people.

Plan your negotiation keeping in mind your lists of what to do and what to avoid, and how to do each. The current research suggests that people who pay attention to the quality of the relationship they have with the others in the negotiation get a better outcome.

Many thanks to J. Decker Butzner, MD for his valuable input and suggestions.

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