Take Charge of Your Health Care
Tired of being a number? Here’s how to stand up for yourself when dealing with health-care professionals.

BY DIANE PETERS
FROM CHATELAINE

Picture this: You’ve just had gallbladder surgery; your pleas for timely pain medication go unheeded, and your meals are full of indigestible fatty meat and cheese. Should you put up with this? Lorraine Stein’s* answer is “No way.” Last year when her own postoperative treatment at Mount Sinai Hospital in Toronto included the wrong meals, she doggedly pursued solutions until she discovered the nursing-unit administrator on her floor could help. And when she recovered, she wrote a letter of complaint, which eventually got results: In the future, floor maps and information listing key staff—and what they do—will likely be posted on every floor.

What happened to Stein could just as easily happen to you. Getting the care you need from the health system requires a take-charge attitude.

“Many of us still operate on the old model of the doctor who gives unquestioned orders that must be obeyed by compliant patients. In fact, things have shifted dramatically,” says Edna Durbach, director of patient-family education at British Columbia’s Children’s Hospital in Vancouver.

Whether you’re getting a physical or are scheduled for surgery, here’s how to get the best health care this country has to offer.

At the doctor’s office
Problem: You’ve got nagging back pain, but your family doctor can’t see you until next week. Then you clock 45 minutes in the waiting room and only ten in your doctor’s presence. Feeling rushed, you forget to ask half your questions and don’t know what side effects your prescription may have.

What can you do? Make every minute with your overbooked doctor count, and create a team approach to health care.

• Start your visit before you arrive. Do a little background research on your condition at the library or on the Internet. Write down your concerns and a list of questions.

• Assert yourself. Book a 30-minute appointment instead of the usual 15, suggests Dr. Carolyn Bennett, coauthor of Kill or Cure? How Canadians Can Remake Their Health Care System. Look on yourself as a consumer with rights, not as a passive patient. But leave hostility at home. Diplomacy and politeness will get you better results.

• Keep up your end of the bargain. Don’t agree to physiotherapy three times a week if you can squeeze in only one appointment. You’ll undermine your doctor’s plan, denying her the chance to find an alternative.

• Wrap it up. When the visit is over, Durbach suggests summarizing what each of you has agreed to and what the next steps are.

• Persist. Don’t give up when your doctor dismisses your concerns. A Waterloo, Ont., mother had been assured by a pediatrician that nothing was wrong with her daughter, who was often weak and tired. The mother took her daughter to emergency, where the child was diagnosed with leukemia. More than six years later, her daughter is doing fine.

• End an unhappy relationship. If your doctor balks at your proactive stance, ask friends for a referral or call your province’s College of Family Physicians. (A list of colleges is available at www.cfpc.ca.)

At the specialist
Problem: You’ve waited three months for this appointment, only to have the specialist start speaking to you in medical jargon. Before you can ask what an endoscopy is, you’ve been booked for surgery and whisked out the door.

What can you do? Don’t let these visits end in disappointment. Stay calm and in control.

• Start with a solid referral. Get some background on the specialist from your general practitioner (GP), including his approach to disease and treatment. For instance, says medical sociologist Juanne Clarke of Wilfrid Laurier University in Waterloo, Ont., heart surgeons tend to suggest surgery more than cardiologists, who may prefer less-invasive procedures.

• Keep track of your records. Make sure your family doctor forwards your medical records to the specialist in plenty of time. Call the receptionist to confirm they’ve arrived.

• Bring a buddy. Have your partner or friend accompany you into the doctor’s office if you’re feeling intimidated. She can help you remember the questions you want
to ask and help you find out about treatment options.

• Don’t feel rushed. Your specialist might want to book you for surgery on the spot. Remember you’ll still get a surgery date if you take a few days to consult your family and your GP.

• Trust your gut. If your specialist’s diagnosis or course of treatment doesn’t sit right with you or if you just want to be doubly sure before you have invasive surgery, ask for a second opinion. If your specialist won’t refer you, ask your GP.

• Make another appointment. If you still have questions after the visit, see the specialist again or call your GP to clarify the information.

At the hospital
Problem: You’ve just had major surgery and you can barely keep track of nurses, doctors and medication doses, much less which floor you’re on.
What can you do? Since even the smallest mistake can jeopardize your health, plan ahead to ensure your hospital stay is a safe one.

• Don’t go it alone. If hospital rules permit, make sure a friend or family member is beside you during rounds, before surgery and even overnight. Make sure the hospital knows who to contact in case of an emergency. If no one can come with you to the hospital, ask a nurse to be with you during rounds.

• Find out about procedures. When you check in, Alexis Dishaw, director of patient services and risk management at Mount Sinai Hospital, suggests getting as much information as possible. What will happen today? Tomorrow? When will you get to see your doctor? Who can you ask for more painkillers?

• Watch your medication. Getting the dose or drug wrong is one of the most common mistakes hospital staff make. Write down the name and dosage of all your prescriptions and double-check them with the nurse every time you’re given them.
• Get the support you need. Before you’re ready to leave, find out how to access social workers, transition services, support organizations and links to the community.

Many hospitals across Canada have patient advocates or representatives in place for when you’re having trouble getting the care you need. A patient advocate will sit down with you and hear your story, complaints or questions. In many cases, patient advocates can help track down test results, facilitate communication between the hospital and the patient, or locate a support group.

At home
Problem: You’re about to go in to hospital for major surgery, but no one will be available to help you once you get back home.

What can you do? Start setting up home care ahead of time, and push for as much help as possible.
Look in the phone book’s government blue pages under “home care” for a local access phone number, or call your local health authority to find out about services. You can also contact the Canadian Home Care Association at www.cdnhomecare.on.ca or by calling 613-569-1585.

• Get the facts. Once you’ve identified the kind of care you need with a case-management worker, find out the maximum amount of care you can get? What is the cost? Are there programs to help pay the bills? What other services are available?

• Note to caregivers. If you’re pitching in to help a family member, Deborah Simon, vice-president of health services at VHA Home HealthCare in Toronto, advises you to be mindful of your own health. Ask for help from others, and get respite care whenever possible.

* Name has been changed.

© 2002 BY DIANE PETERS. CHATELAINE (JANUARY ’02), 777 BAY ST., TORONTO, ONT. M5W 1A7
ILLUSTRATION: © JASON SCHNEIDER