As part of a growing health and cost conscious public, we now take more responsibility for our health. More concerned about what we eat, drink and how we exercise, we also bring a questioning approach to health care. We are now forging new relationships with our doctors and we are less likely to sit passively and accept unquestioningly our doctor’s directions. We want second opinions, alternative treatments or medications.

As a person with SCI, you know you will spend more time with doctors and other health care professionals than most people. It is a good idea to know your rights and responsibilities as a patient as well as your doctors rights and responsibilities.

What Are Your Rights?
As one who knows your body, your aches and pains, your specific needs related to your injury, you have the right to two-way communication with your doctor about your long-term care concerns. You have the right to whatever information you need about your injury and possible complications arising from the injury.

• having adequate access to your doctor
• participating in major decisions related to your care
• changing doctors if your best interests are not being served
• knowing whom to contact if your doctor is unavailable
• having your records handled confidentially
• knowing what you will be charged for, and how much those charges will be
• being seen within a reasonable time of your scheduled appointment
• asking for a second opinion

What Are Your Responsibilities:
In addition to your rights, YOU HAVE RESPONSIBILITIES TO YOUR DOCTOR. You need to tell him your medical history, what other doctors you may be seeing, what medications you use or have used, and what is your alcohol or drug history. If you have a right to the best treatment available, then you have the responsibility to share with your doctor information that will help him or her diagnose, medicate or treat your particular problems. If you keep things from your doctor, then the treatment you receive may be ineffective or dangerous.

Additional Responsibilities:
In addition, you are responsible for:

• telling your physician about your symptoms
• understanding in detail what is wrong with you and what treatment is available and planned for you
• following your doctor’s directions, reporting symptoms or complications or making sure your doctor knows why you cannot do so
• keeping scheduled appointments, paying bills on time, and limiting other calls unless they are vital to your well being

Your Doctor Has Rights, too…
Among your doctor's rights are:

• to know about your life-style, particularly if it has an impact on your SCI or complications from the injury, or proposed treatment
• to withdraw from treating you if he or she feels that there is an ethical or personal conflict with you
• to privacy

…and Responsibilities
While this seems obvious, physicians are accountable for:

• thoroughly discussing with you diagnoses, tests, and treatments in a nontechnical way
• recommending reasonable alternative treatments or medications
• notifying you of non-office hour coverage, keeping good patient records, and informing you of services not covered by insurance
• recognizing when his or her knowledge is limited and asking for a second opinion
• developing a partnership with you in your quest for wellness

As you age with your spinal cord injury, you need people to work with you to keep you healthy and to improve your quality of life. Your doctor is the key to your health. As part of your team, your physician wants you to understand the rights and responsibilities you both have.

Remember: your doctor is working for you!

Resources:
Building a New Dream: A Family Guide to Coping with Chronic Illness by Janet Maurer.
Reading, Mass: Addison-Wesley Publishing Company, 1989.

Interacting With Your Doctor

Many medical doctors, particularly general practitioners, family practitioners, or internists, see relatively few people with spinal cord injuries. They may not be aware of its complications or its impact on aging. Therefore, you, as an SCI survivor, need to learn what you can about your current condition so you can inform your doctor of your specific needs. The field of medicine is so broad that it is impossible for any physician to be an expert on everything. Moreover, information about SCI is expanding enormously. Forty years ago there were few survivors. Now there are thousands, and we are learning something new every day.

Wanted: Team Work!
You and your doctor can work as a team along with other health care providers. You can contribute to each other’s understanding of SCI. Share with your doctor the following:

• your medical history and records
• your medications history and drug allergies
• the specifics of your injury. For instance: what are the complications relating to your vulnerable body systems such as bladder, bowel, skin, autonomic nervous system, mobility and self care
• your family medical history
• your concerns about your functional level, self care, and family concerns

Visiting Your Doctor:
When you make an appointment with your doctor, think ahead about the information you need. Arrive with your questions already written out. Don't be embarrassed if you don't understand something. Take notes or ask your personal care attendant to take notes. Don't be afraid to acknowledge your fears.

Questions:
Ask specific questions, such as:

• What are the potential side effects of treatment, surgery or medications that may arise as a result of SCI? If your physician is uncertain, insist that he or she find out.
• Why is he or she prescribing this treatment or medication? What will be the short and long-term effects, particularly on your vulnerable body systems? Will it affect your bowel or bladder? Will you need attendant care?
• Are there alternative treatments or medications for your condition? If so, what are the advantages or disadvantages?

Tests…
Undoubtedly, the time will come for testing and diagnostic procedures. Approach this
reality with more questions:

• How will testing help in the diagnosis or therapy?
• Does your SCI add any new risks? Are there safer or easier ways to get this same information? What is the step-by-step explanation of the test?
• What are the costs? What will health insurance cover?
• How will your SCI affect how you prepare for the surgery? For instance, if you need a colonoscopy, will the usual enema completely empty your colon? If not, what does your doctor suggest?

Procedures…
Will anesthesia be used and what may be the complications? Are there special instructions regarding preparation for the test and following the test? What are the possible complications resulting from the tests, particularly in view of your injury? How will your skin be protected? Will you need to be lifted? Will you need extra attendent care for the prep or follow up?

…And Surgeries

• If surgery is recommended, how is it expected to help? What will happen in the surgery? What are the chances it will work? What are the risks? What will be your recovery time?
• You'll also need to ask--and understand--how your SCI will affect your recovery following surgery. More important, you'll need to help your doctor understand how his or her recommendations might affect you. For example, "no lifting for six weeks" is a common post-surgical restriction. You will need to explain to the doctor what this means to you. You can't transfer, can't do shifts, can't push up hills, etc. Will your doctor authorize attendant care for six weeks while you recover, and will he or she recommend that to your insurance company? Should you rent a power chair or custom mattress?

These are the concerns that you can raise which are important for office procedures, medications, testing, and outpatient or inpatient surgery. Remember: No questions are out of bounds!

Second Opinions:
If you are facing major surgery, but it's not a crisis, you may wish to consult another physician. You will want to know what other treatment might be suggested. You may also be concerned about how the surgery might impact your transfers, wheeling and other activities. If your own doctor does not have answers to your concerns, consulting another is the best option.
Doctors, at times, may feel threatened by second opinions. Kievman, in her book For Better or For Worse: A Couples Guide to Dealing with Chronic Illness, suggests the question, “Is there someone else we should consult with?” Your best bet may be to get a second opinion from a physiatrist or a physician who has had a history of treating SCI survivors and can tell you all the options with all the potential side effects.

Partners:
Remember, you are in a partnership with your physician for your long-term health care. You need to tell the doctor what your body can and cannot do. Together, you and your doctor will keep you on track for a healthier and more functional life.

Resources:

Building a New Dream: A Family Guide to Coping with Chronic Illness and Disability by Janet Maurer. Reading, Mass: Addison-Wesley Publishing Company, 1989.