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Partnering with Your Health Care Professionals
Two customers are seated in an elegant restaurant. One of the customers is loud, rude to the waiter, full of complaints about the food and demanding. The other is polite, considerate of the waiter's time, compliments the food and displays a sense of humor. Which customer do you think will get better treatment from the staff of the restaurant? Well, the same idea applies to many situations where a person is getting some kind of service from professionals. Although health care providers swear an oath to "do no harm" and to give the best treatment possible to all patients, they are still human, and can react to the attitude shown by a patient or client. When a patient follows all the instructions they are given without demanding extra attention, they might be labeled compliant, that is, obedient. However, when a patient refuses to follow rules of the hospital, insists on doing things their own way, is insulting to medical staff, or excessively questions the treatment they are receiving, they might be labeled "difficult" or noncompliant, that is, rebellious. Although both patients receive proper medical treatment, there can be a subtle discrimination against the noncompliant, "difficult" patient 1.
Does this mean every patient has to be meek, quiet and willing to do whatever they are told without questioning in order to win the friendship of the medical staff? That's not really the solution to this situation, either. It's important that patients think of themselves as consumers who have rights and needs. In fact, most hospitals and medical care facilities have a written "patient's bill of rights," which you can ask to see. Most importantly, a patient should keep in mind that they not only have a right to ask questions about their treatment, but should speak up if there is anything about their care they don't understand, or don't agree with. You are the only person who knows if something feels right or wrong inside your body, if you feel better after a treatment or not, or if a treatment solves one problem but creates another, such as when a drug has a side effect. It's up to you to let your health care providers know when something is wrong. Just speaking up shouldn't be enough to earn a label of "difficult" or noncompliant; in fact, some medical professionals might appreciate that you are giving them accurate feedback about your health condition.
What matters is your attitude. You really will do yourself a favor if you approach any problems you have with your medical treatment as though you are a political or business representative negotiating a deal. Your goal is to make changes, not make enemies. It will be to your benefit to learn to work well with the health care system to get your needs met. Examples of ways some of our study participants were successful in negotiating the system included Brenda's following the hospital's schedules and rules so that she felt she was in control; Brenda's ignoring minor problems so that when she had a matter she felt strongly about, she would present her case strongly and get a good result from the staff; Judy's recruiting the support of other patients on her hospital unit before going to talk to the medical staff about making changes in the food choices offered to patients; and Dave's sharing the staff's enthusiasm during his hospital stay, leading them to ask him to take a leadership role on the unit. These people all found satisfaction with their interactions with the "system." Other participants in our study who were less successful in their interactions included Billy, who was so unwilling to deal with the medical bureaucracy that he avoided seeking treatment when he really needed it; Charlie, whose difficulties speaking English and his tendency to become overly attached or dependent on medical professionals made staff unwilling to spend more than the minimum time with him; Gary, whose breaking of rules about drug use and visitors got him kicked out of hospitals and convalescent homes; and Howard, whose abrasiveness to nurses might have contributed to their ignoring many of his requests for attention or help.
If you think that you have been labeled as "difficult" or noncompliant, work to change your image or regain the respect that you deserve from your medical caregivers. Usually the best way to earn respect is to give respect. When you tell the medical professionals about your concerns, speak calmly and do not intentionally insult the person you are speaking to. Present your case clearly, explaining what you have noticed and what you don't like about it; if you have suggestions for change, offer those, too. Write down notes in advance to help you remember what you want to say, and take notes during the meeting of what the doctor has to say. Be considerate of health care professionals' time; make an appointment for speaking or meeting with them if they do not have time to talk to you during rounds or on the phone. However, if you are having an emergency, be sure to let them know this is urgent so that they give you immediate and complete attention. (If you're not already in the hospital, dial 911 if you have to!)
Being a "good" patient, or even being compliant, does not have to mean being silent. Work in partnership with your health care professionals, and you will be making the best use of the "system" that you can.
If you like using the Internet to get more information or ideas about a subject, there are many good websites you can visit to find out more about dealing with situations where you and your health care providers are not seeing eye-to-eye. If you would like to get tips on "working the system," for example, a page called Rights & Benefits, on the website of the Christopher Reeve Foundation, could be helpful, but be aware that it focuses more on money matters than on dealing with labels of "compliant" or "difficult." This page does have good links to articles and other websites that give information about the basics rights covered by the ADA; sources of payment for medical services including insurance, Medicare, Social Security and Disability; people's rights to work and still receive government health care benefits; and people's rights to get vocational rehabilitation.
To get a better understanding of the rules that a medical facility might have, this Description of Rehabilitation Roles and Services, from the LIFE Center of the Rehabilitation Institute of Chicago, might be a good starting place. It explains what the job is of each of the members of a health care team, which could help you to know what to expect from them, and who to talk to if you aren't getting what you expect. If you are wondering about the experience or knowledge your health care provider might have in treating people with spinal cord injury, Changing or Choosing Your Doctor, on the website of Craig Hospital in Denver, Colorado, can be a very helpful guide. It suggests questions to ask the doctor or yourself to size up whether this doctor is a good fit for your needs, and can help you decide if you should change doctors. They also have an article called You And Your Doctor: Rights and Responsibilities, which lets you know what your rights are as a patient.
But if think that the problem with your health care provider might be that the two of you are not communicating well with each other, Craig Hospital also has an article about Interacting With Your Doctor. Another good guide to better communication with your health care provider is Partners in Healthcare, a clear, easy-to-remember list from the North Carolina Office of Disability and Health. Let's Talk...and Listen, from inMotion, an online magazine of the Amputee Coalition, also has some good tips for both you and a medical professional to keep in mind when talking together about your health. And Mainstream, an online-only magazine of advocacy "for the able disabled," offers tips and sample conversations to give you ideas of How to protect yourself when you go to the doctor. Just speaking face-to-face with your doctor or therapist about your concerns might change the situation, and help you get the excellent care you deserve from them!
What Makes a Good Patient-Consultant Relationship, by The Pituitary Foundation in Great Britain (the pituitary is a gland in the body that affects growth and the flow of some hormones), is about going to see a "consultant" (in the U.S., the word would probably be "specialist"), and reminds doctors that sometimes a person might seem to be a "bad patient" simply because they are scared or angry or depressed about their illness. If you choose to read this article, just imagine the words "spinal cord injury" every time they use the word "pituitary". You need to register with the website to read the article, but it's free to register.