First posted 6/23/11 on the HHCF Blog
Faced with a difficult medical situation, it is not uncommon for patients to ask doctors for advice. But asking, “Doctor, what should I do?” is a very different question than, “Doctor, can you help me understand and weigh my options?” It may sound like semantics, but your involvement and participation in making personal health decisions can make a difference in your recovery.
A recent study showed that patients who make their own choices report better recovery than those for whom choices were made by doctors (1). Regardless of WHAT choice was made, the patients who did their own choosing reported better physical and psychological outcomes; active choice-making had its own healing power. It may also protect us from unwanted consequences.
The following is a true story.
A close family member, “Kim,” received a second diagnosis of breast cancer, two and a half years following her original diagnosis. Because of her previous round of radiation (which cannot be repeated on the same tissue) the recommended course of action was a mastectomy. Before her meeting with the surgeon, Kim did her homework. She read about her options following a mastectomy, and interviewed people who had chosen breast reconstruction.
Based on what she learned, Kim decided that she strongly favored NOT having reconstruction, but would discuss it with the surgeon to make sure there weren’t additional factors she needed to consider.
The surgeon, Dr. Smith, was appropriately empathetic about the disappointment surrounding a repeat cancer diagnosis, and spent a lengthy amount of time explaining the details of the procedure, what could be expected, how lymph nodes would be tested, risks afterwards, and actions Kim could take to prepare for and recover successfully. Kim felt well-informed.
Surprisingly, however, the conversation then turned to options among plastic surgeons for subsequent reconstruction and how the two surgeons would work together. Dr. Smith spent a full 10 minutes describing reconstructive options and provided a list of doctors. Yet within this discussion, Dr. Smith never asked Kim if she had other preferences.
Finally, Kim paused and asked: “From the reading I have done and people I have talked to, I am strongly considering NOT having reconstruction. I don’t think I want to undergo multiple procedures and risks of infection and future problems. But, based on your presumptions, now I am wondering if I have missed something. You seem to be in clear favor of reconstruction. Do you have strong reasons to advise that I SHOULD have reconstruction?”
Dr. Smith seemed a bit startled and was quiet for several seconds.
“Well, if you are looking for someone to convince you to reconstruct, you’re asking the wrong person,” she said. “Personally, I would never put myself through it, and the number of patients who regret it are 10 to 1, compared to those who opt out. “
When Kim looked puzzled, Dr. Smith continued, “Most women want to reconstruct so I try not to bias them with my personal opinion. But I am actually relieved to hear you have made that choice.”
Despite feeling reassured about her original decision, Kim said she wondered what would have happened if she hadn’t considered her preferences before meeting the surgeon. How many women had the same meeting with this doctor and simply went along with the direction of the conversation and underwent reconstruction without ever considering otherwise? And how many of them went on to regret it?
Only the individual can decide.
So that no one misunderstands, this example is not about whether reconstruction is right or wrong, or whether the doctor’s opinion about reconstruction was right or wrong. Instead, it is an example of how each person has unique preferences, in this case about risk, benefit, appearance, discomfort and convenience. No single choice is the correct choice for everyone. Plus, some studies indicate doctors recommend different treatments for patients than they would choose themselves because they presume patients value different outcomes than they do (2).
With breast cancer, patients face multiple decisions, and multiple options within each: Lumpectomy or mastectomy; radiation, chemotherapy or both; medications to reduce likelihood of reoccurrence; genetic testing; reconstruction or not? Rarely are these choices clear cut. Plus, the situation is naturally overshadowed by a degree of shock and fear surrounding the label of “cancer,” how much looking ‘feminine’ is important to personal identity, and concerns about how a person’s loved ones will relate to how they look. Part of the decision-making process is simply figuring out what matters most, and what trade-offs one is prepared to make.
Of the friends I know who have faced these choices, at one point or another they often exclaim: “I just wish someone could tell me the right answer!” Unfortunately no one else can.
As much as we might want someone to make decisions for us, they can’t make better choices than we can make ourselves.
A doctor or nurse can explain benefits and risks, but only the individual can assess what matters to them. One oncologist told me that he has seen patients undergo very difficult side-effect-producing treatments to achieve a seemingly-tiny 3% improvement in survival rate, and other patients decline much less difficult treatments that offered a 30% improvement in survival. It all depends on what is most important to the patient; their choice.
Why this matters: When it comes to decisions involving your personal health and healthcare, the right decision is the one you participate in making. We each own our health and must live with consequences of our choices. More important, we must also live with the results of choices others make on our behalf. No one, not even the most highly-trained physician, can make a completely appropriate choice for another; preferences simply differ—and matter—too much.
1. Polsky D, Keating NL, Weeks JC, Schulman KA: Patient choice of breast cancer treatment: impact on health state preferences. Med Care 2002; 40:1068-79.
2. Ubel PA, Angott AM, Zikmund-Fisher BJ: Physicians recommend different treatments for patients than they would choose for themselves. Arch Intern Med 2011;171:630-4.
Wendy Lynch is a benefits analyst who writes at the HHCF Blog.