Sooner or later, it happens to most of us: We find ourselves sitting in a doctor’s office hearing some very bad news. The diagnosis is heart failure, cancer, dementia, kidney failure, Parkinson’s disease or some other serious (and possibly terminal) illness. At that moment, we are scared and vulnerable. It’s easy to make mistakes when we’re in a frantic quest to beat back illness. Here’s how to avoid or overcome these common mistakes…
MISTAKE #1: Making rash decisions. Even when a diagnosis is dire, jumping right into treatment can be a mistake. So slow down, and make sure you have all the information you need. That means asking how your illness and the treatments you are considering will affect your day-to-day life…how likely it is that treatments will work…and what “working” means. To truly understand the answers, you need to also (politely) insist that doctors cut the jargon—so you won’t end up thinking, for example, that a “response rate” is the same as a “cure rate.”
Cancer patients often are surprised to learn that they can wait a bit before starting chemotherapy or other treatments—it is almost always safe to wait two to three weeks, but the doctor can tell you if it’s not. These days, this short pause will often include waiting for a genetic analysis of the tumor, which might point to a more effective, targeted treatment. Getting extra information like that can make a wait worthwhile.
MISTAKE #2: Believing everything you read online. By now, everyone knows that all online information is not created equal. But many people cannot resist reading everything they find—and, in the process, they stumble across a lot of information that is scary, wrong or not relevant to their personal situation. Best approach: Ask your doctor for reputable information sources, and discuss what you find with him/her.
MISTAKE #3: Not focusing on what you really want. Let’s say you might benefit from a cutting-edge treatment, but you learn that getting it will mean frequent trips or a long stay in another city.
Those trips might be worth the hassle if your goal is to explore every avenue for treating the illness and taking any chance, no matter how small, to find a cure or at least manage an illness—but not if your primary goal is to enjoy the comforts of home and family in what might be precious remaining weeks or months.
The right question to ask is: Will this procedure or medicine help me to get back to my home and family? If it won’t, what will?
MISTAKE #4: Focusing on death instead of living. It’s important to think and talk about the end of life, but not at the expense of planning for the weeks, months or years that might still lie ahead. What will you need to do to keep up cherished hobbies and habits for as long as possible? Can you take a long–delayed trip, reconnect with long-lost friends or reach other personal goals?
To do that planning, you need to know the truth, so do not be afraid to ask your doctor how much time you have left, even if he has to estimate. You might have a lot more (or less) time than you assume.
Helpful: Regardless of your prognosis, ask about “palliative care”—care aimed at helping you function better, with less pain and stress and more emotional and spiritual support.
MISTAKE #5: Keeping your illness a secret. It might come as a surprise in this age of online over-sharing, but many people still keep serious illness a secret from family members, friends and others. That’s a mistake. At the very least, you want a support person to go with you to important medical appointments to act as a second set of ears.
But you also may find a wider network of people eager to help with everything from meals to rides to lawn-mowing. Let them help. Share your hopes and fears with people you love and trust to help keep your stress levels in check.
Helpful: If you are wondering whether to tell someone close to you, try turning the table. What if you learned that this person had a serious illness and had not shared it so that you could help him? If you wish this person had told you, then you should think about sharing your news with this person.
MISTAKE #6: Assuming that the most aggressive or newest treatments are best. Even if your main goal is to live as long as possible, the most aggressive treatments are not always the best choices. You might sacrifice both quality and quantity of life by going ahead with a treatment that has little chance of helping you and a high probability of harming you.
For example, for some people with heart failure, a left ventricular assist device (LVAD), a pump surgically implanted into your heart to help pump the blood, might seem like a great idea. But there are serious complications, such as bleeding and stroke. Many people who have an LVAD implanted feel better, but some never get over the operation or have complications early and may feel that they are worse off with the LVAD than without it.
Helpful: Ask your doctor what is the best case, worst case and likely case with a particular treatment…and ask for the same assessments if you don’t get that treatment.
MISTAKE #7: Limiting your care to alternative treatments. Complementary therapies—especially yoga, meditation, acupuncture and others that have been shown in research to have benefits—can be helpful when combined with standard treatments or when the benefits of standard treatments are exhausted. But patients who rely only on unproven approaches, including those pitched by pricey foreign clinics and online hucksters, sometimes wait too long to get evidence-based treatments that could have made a difference in how well and long they live.
MISTAKE #8: Beating yourself up. Many people blame themselves for getting sick—a woman may have forgotten to get a mammogram, for example, and developed breast cancer. Give yourself a break. It’s true that there are risk factors for serious diseases. But generally speaking, the development of illness is more complex than that.
Also, don’t beat yourself up for not staying positive enough. While cultivating joy, hope, gratitude and love will help you face your illness, blocking off all sadness, worry and grief will not help. Find a balance. Helpful: Talk about things that are real, meaningful and personal with those who care about you.