In healthcare, why it is best that we choose for ourselves.


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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.

References

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.


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6 Responses to In healthcare, why it is best that we choose for ourselves.

  1. Thank you for the great insight, Wendy. I was shocked by the number of patients that regret their decision to reconstruct. I am wondering if there is any information out there about the type of reconstruction. Is there more details in her research providing the reconstruction that was least favored or one that was most favored?

    • Theresa,
      To be clear, this was one doctor’s opinion. The physician in the blog was saying that OF THE WOMEN who regretted their decision, it was 10-1 more likley to be women who did recontruct. That said, the rate does seem higher than one might expect. One study found that just over half of women getting recontructed did not regret it, one quarter had some regret, and one in five had strong regret. Add to that the announcement this week that a significant portion of implants will need to be removed within 10 years… and it just means women should get complete information before making their choice.
      Here’s the article:
      Sheehan, J., Sherman, K. A., Lam, T. and Boyages, J. (2007), Association of information satisfaction, psychological distress and monitoring coping style with post-decision regret following breast reconstruction. Psycho-Oncology, 16: 342–351.
      Thanks for the comment.

  2. Excellent point.

    Decisions like this are very trying. In this example there is no mention if the woman was also facing decisions about further systemic treatment nor of her anxiety level over whether the new disease might have spread. In fact, this particularly woman probably came into this decision sequence with above average knowledge of her situation because she’d gone through the cancer drill once before.

    If you have never been through a medical crisis or know next to nothing about whatever condition you’ve developed it is very difficult to make decisions about your own care. If the situation demands quick response the amount of information you may have to assimilate is beyond the reach of many people.

    Your doctor(s) do not have the time to be your teacher and advocate. Their waiting rooms are full of people just like yourself and it takes more than the 30 minutes you’ve been alloted to work through the emotions and medical options.

    It is time when having friends/family who can support you and learn about your options to help you makes a huge difference.

    As to the reconstruction issue. In my experience someone who has been already been radiated is more likely to have problems with breast reconstruction. Simple techniques are prone to infection and poor results; complicated techniques require moving body tissue around in major ways. If a reconstructed breast is worth it then it’s the right decision, but you are looking at spending the next year or so waiting around in a Plastic Surgeon’s office, and that’s not eveybodies idea of a high quality year!

  3. Couldn’t have said it better myself. It’s a shame that doctors don’t spend more time to give patients their options. I’ve found that if I give the patient the pros and cons of different options, they often don’t pick the obvious choice. The reasons are numerous, but basically personal in nature.

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