You’ll be a lot more relaxed going into an operation if you’re not worrying about things such as whether the operation is really a good idea
Your doctor diagnoses a problem and tells you that you could or should have an operation. If you’re like most people, you’re surprised, if not shocked, and at least a little fearful—not emotional states conducive to thinking through important decisions calmly and rationally. Then there’s all the medical information you’re being given—unfamiliar, possibly confusing.
Surgeons do their best to lay out what patients need to know to be comfortable making a choice, but knowing beforehand the kinds of questions to pose when you’re faced with such a decision may help make the process a little less daunting should that day come for you or someone close to you. With that in mind, here are some of the things to ask before going ahead with surgery.
What exactly is wrong?
When people receive a diagnosis, they’re not always sure exactly what it means, according to Dr. Heather Cox, a vascular surgeon at the Northern Alberta Vascular Centre and a clinical lecturer in the Division of General Surgery at the University of Alberta in Edmonton.
“It’s very common that I ask a patient, ‘Why do you think you’re here today?’ and he or she has no idea,” she says. “Patients need to know what the problem is, and I spend a lot of time explaining that.”
Sometimes, despite a doctor’s best efforts, that message doesn’t get across, as Cox has discovered when she asks medical students to explain in their own words what she’s said to a patient. “I’ll realize it was lost on them—and they’ve had four years of medical school.”
So if there’s something you don’t understand, speak up, she urges. “I have no problem if someone asks me three times to explain the same thing. I would rather that than have them leave and wonder, What did she say?”
Can you describe how the procedure is done?
This discussion should also involve a description of what will happen during the operation, including details such as where the incision will be made, how big it’s likely to be, and how long the surgery is expected to take.
“No surgery is too complicated to explain,” stresses Dr. Richard Fox, an assistant professor in the Division of Neurosurgery at the University of Alberta.
If something isn’t clear or seems odd, don’t be afraid to ask for clarification, no matter how silly the question might seem. Cox says that at least one of her patients was worried about how long she’d have to walk around with a big inflated balloon sticking out of her leg after misunderstanding a description of angioplasty, which involves pumping up a tiny balloon to reopen a narrowed artery. Cox discovered the miscommunication only when, before the procedure, the woman’s daughter made a remark about buying extra-large pants to accommodate the balloon. Only then could Cox ease the patient’s concerns by explaining that the device is tiny, inflated only inside the artery, and stays in place only briefly before being removed. This potential for misunderstanding is why having a partner or another supportive family member or close friend on hand during the consultation is helpful.
Many surgeons provide written material such as pamphlets and brochures as a reference tool for patients. If the doctor doesn’t provide such materials, ask him or her to recommend a website or two where you can find reliable information relevant to your situation.
What is the goal of the surgery you’re proposing? And what are the odds it will achieve that goal?
Surgeons say it’s not uncommon for people to assume that surgery is always an attempt at curing or permanently fixing a problem, but that isn’t always the case. Sometimes an operation is proposed to keep a condition from progressing or to relieve one specific symptom.
“For example, a patient may have many types of pain, but our goal might be to relieve one certain type of pain,” Cox explains. Needless to say, if that limited goal isn’t clear at the outset, the patient will be disappointed afterwards, even if the surgery is successful.
Patients should also ask how long the benefits of the procedure are likely to last, since some operations may need to be repeated.
It’s important to understand that there’s a chance the procedure won’t work, too. Fox cites the example of an operation for lumbar spinal stenosis, a condition that occurs when the open spaces within the lower spine become narrowed—the tight squeeze can compress the spinal cord or the nerves travelling from the spinal cord to the legs, causing pain.
“After surgery, 85 per cent of people come back and say they’re a lot better, 10 to 15 per cent are improved but not all better, two per cent say they’re not any better, and every now and again, someone wishes he or she had never met me because their symptoms actually worsen after the operation,” Fox says.
What are the risks of the proposed procedure?
“Even routine procedures can have complications,” says Dr. Bob Kiaii, a cardiac surgeon and professor in the Division of Cardiac Surgery at Western University’s Schulich School of Medicine & Dentistry in London, ON. These can range from the relatively rare and life-threatening or life-altering (including heart attack, stroke, and paralysis) to more common risks, such as bleeding and infection.
“For cardiac surgery, unfortunately, death is the biggest risk, and I think people do not really comprehend that well,” he says. For example, some people assume that bad things can happen only if a member of the surgical team makes a mistake, which isn’t the case.
Or, says Marika Warren, an assistant professor in the Department of Bioethics at Dalhousie University in Halifax, “Patients might hear the risks but discount them.”
The risks involved and their magnitude vary not only according to the type of surgery, but also with the overall health of the person undergoing a procedure.
“If someone has a background of heart problems, then their risk for a heart attack may be higher,” Cox explains.
“Heavier people with diabetes have a greater risk for infection,” Fox says.
Consequently, it’s important to ask how the risks of the operation pertain to you personally.
There are two important things to keep in mind when it comes to the trade-off between the expected benefits and risks of an operation. One is that being referred to a surgeon doesn’t necessarily mean you’re a good candidate for surgery—especially in the case of specialized operations, when the referring doctor may be unfamiliar with the risk/benefit ratio.
“Sometimes,” Kiaii says, “we have to tell referred patients that we don’t recommend surgery because it won’t significantly improve their overall quality of life and the risks therefore outweigh the benefits.” And sometimes, he says, “when more elderly patients have an operation, they don’t go back to the same state of life after recovery.”
Even if the surgeon thinks you’re a suitable candidate for an operation, Cox says, “it’s important that people realize they have a choice: the fact that we’re talking to you about surgery doesn’t mean we’re trying to coerce you into a procedure. Is this really right for you? That’s where we look to the patient.”
Variables such as your tolerance for risk and how severely symptoms such as pain and loss of mobility are affecting your ability to do the things most important to you also factor into the equation.
“It’s fair to ask health care providers what they would recommend,” Warren notes, “but it really helps to have a sense of what’s important to you so they can tailor their recommendations; they can draw on their training and their experience, but they’re probably different from you in a variety of ways.”
Let’s say that golf is one of the things that make your life worth living, but you’re having difficulty walking due to leg pain: you might be willing to tolerate a higher degree of surgical risk if the procedure has a reasonable chance of improving your mobility than would someone whose favourite pursuits are sedentary. On the other hand, if your passion is playing jazz guitar, you might rule out an operation that carries even a small chance of impairing your dexterity.
“If your surgeon isn’t aware of those sorts of things, he or she might not make the same decision,” says Dr. Tim Darsaut, an assistant professor in the Division of Neurosurgery at the University of Alberta.
Incidentally, there’s research suggesting that doctors may be more conservative when choosing a treatment for themselves than when recommending it to a patient, possibly because they’re more acquainted with the potential consequences.
“Deciding whether to have surgery is a very personal thing,” Fox emphasizes. “In the case of elective surgery, there’s no rush—you have time to think about it. I tell people, ‘I want you to go home and sit in your own kitchen and think about it,’ because you can’t think in the doctor’s office. Don’t let anybody drag you into the operating room. Remembering that we have the luxury of time puts people more at ease.”
Warren adds, “The moment of signing a consent form should be the result of reflection and dialogue that have been going on. It’s not the paper but the process that matters.”
What are the non-surgical treatments for my condition?
“One of the top questions to ask is what other types of therapies are available?” Kiaii says.
For example, Fox adds, some common causes of back pain, such as a simple herniated disc, don’t call for surgery: “It’s amazing how much better you’ll get with regular exercise.”
What will happen if I don’t have the operation?
The situation may not be as dire as you imagine. Fox, for example, has found that many people with spinal stenosis mistakenly believe that the resulting nerve compression causes irreversible damage. “I emphasize that this compression isn’t dangerous,” he says, “and you’re never going to become paralyzed from this.”
How much experience do you have with this procedure?
Studies suggest that surgeons who do a high volume of a specific surgery each year have better success rates than those who do few such procedures. (What constitutes “high volume” depends on how routine or unusual the operation is: more than 50 procedures is a decent threshold for a fairly common surgery, such as removal of the gall bladder or knee replacement, versus perhaps 20 for a surgery that’s relatively rare. For instance, a recent US study found that in the case of thyroid removal surgery, only three per cent of patients whose surgeons did 21 to 25 operations a year experienced complications; by comparison, the complication rate was 87 per cent for surgeons who performed one procedure a year. It’s fair to ask your surgeon how his or her volume compares to that of others and whether the procedure is a routine part of his or her practice.
You can also ask how many times the proposed operation is done each year in the hospital where you’ll be receiving care: research suggests that patients who have surgery in higher-volume centres fare better than those who get the same operation in hospitals where it’s performed less frequently.
If I choose the surgery, who will advise me about things such as whether to stop taking my medication beforehand?
If you have diabetes or other chronic medical issues, you may be sent to a preoperative assessment clinic, where an anaesthesiologist and perhaps an internist will provide more detailed information on the procedure and recovery, as well as instructions on when to start fasting before the procedure, whether to take your regular medications on the day of the operation, and whether you should stop taking certain drugs and supplements in advance. For example, you may advised to stop taking blood-thinning medications and herbal preparations that increase the risk for bleeding, including ginseng, garlic, and ginger, for a certain period.
What can I expect during recovery?
Having a realistic idea of what to expect after surgery, from how long you’ll need to stay in hospital and how much assistance you’ll need at home to how long it will be before you can resume normal activities, can save you a lot of fear and frustration.
For example, it’s helpful for family members to understand that with much older patients, confusion and delirium after surgery are relatively common. “It’s not them—it’s us and the medications we’re giving them,” Cox says.
Even robust younger patients can be groggy and disoriented for hours or even days following an operation.
Having a plan in place for at-home care is also critical, especially when the person undergoing surgery is the one family member who normally cares for everyone else. “If the family takes the person home and has no idea what’s involved in taking care of him or her, the patient might end up back in Emergency,” Cox says. This can also happen if, before you’re discharged from hospital, you aren’t given clear (preferably written) instructions on problems to watch for and whom to call if you have questions once you get home. If such information isn’t provided as a matter of course, ask.
In fact, “Don’t be afraid to ask” is a good overall rule when it comes to taking care of your health. “If somebody gives me a prescription, I want to know the common side effects of that drug,” Cox says. “Who do I call if I have a problem? When should I stop?”
Not getting these answers ahead of time can lead to problems; for instance, if, after experiencing a side effect from your blood pressure medication, you stop taking the pills instead of talking over strategies such as changing the dosage or switching to a new medication, you could end up in hospital with a heart attack.
“I don’t think consent is limited to surgical procedures,” Cox says. “Patients have a right to ask questions about those things that are considered simpler aspects of health care, and it’s equally important.”
While you may run a greater risk of something catastrophic occurring when you get behind the wheel of a car than when you go in for routine surgery, the occasion of going in for an operation is a good time to think through the kinds of medical treatments you’d want someone to choose on your behalf should you become too sick to communicate your wishes.
“Evidence indicates that the process of other people making decisions for you is certainly imperfect,” says Marika Warren, an assistant professor in the Department of Bioethics at Dalhousie University in Halifax. That’s the rationale behind putting together an advance care directive, a document that designates a substitute decision maker and outlines your preferred course of action in various situations.
The first step is choosing the person best suited to speaking for you. “People sometimes assume it has to be a family member, but it really can be anyone you think would do a good job of making the same medical decisions that you would,” Warren says.
The next step: discussing your wishes with both this person and your family members. Even if you don’t draw up a formal document, Warren says, “just having those sorts of conversations gives everyone more to go on if they ever are in the situation of having to make decisions for you.”
A few other factors to consider when thinking through your options: Which is more important to you—being able to live independently or being close to friends and family? What makes your life worth living?
You can find conversation starters, an online workbook, links to provincial resources, and other tools to help guide you through the process at advancecareplanning.ca.
By Wendy Haaf