CHICAGO, Illinois, Feb. 29, 2016 - An elderly woman was advised by her surgeon to undergo heart valve replacement surgery. It went well. Yet afterwards, she told researchers, “They told me I might have complications but I didn’t know what questions to ask. I never knew I would feel so weak and tired.”
The woman had not understood that valve replacement can have a long recovery, said Dr. Margaret “Gretchen” Schwarze, who just won a prestigious grant to study how to help patients understand what surgery will mean for them.
When a doctor recommends surgery, patients often feel they have no choice and seldom do they ask enough questions to understand the possible outcomes, said Schwarze, a member of the Society for Vascular Surgery and a vascular surgeon at the University of Wisconsin-Madison.
Surgeons are required to focus on risk disclosure because of informed consent guidelines, and some struggle to help patients know what to expect with surgery. Often the patient and surgeon have different ideas about what “successful surgery” means and whether patients will be satisfied with the outcome.
In the upcoming study, which earned a $2.1 million grant from the Patient-Centered Outcomes Research Institute (PCORI), patients will be provided with a small brochure with suggested questions to ask their surgeon before surgery. The questions were selected by members of a patient and family advisory council who were recruited by Dr. Schwarze to assist her team with their research.
The questions are universal and can be applied to any kind of surgery, but are primarily designed for major surgery. Participating surgeons will be at five sites: Brigham and Women’s Hospital, Boston; University of California-San Francisco; Rutgers University, Newark, New Jersey; Oregon Health Sciences University, Portland, Oregon; and UW-Madison.
“In our pilot study, we found that patients who asked these questions felt more involved in the conversation they had with their surgeon,” Schwarze said. “As a surgeon, I know that patients come to me sometimes thinking I can do something for them that I can’t. For example, carotid endarterectomy prevents stroke in the future. But sometimes patients think that if I take out a blockage, their memory will improve and the ringing in their ears will get better and they will live longer. It’s important to me that they understand that the surgery just prevents stroke.”
Schwarze also found that patients seldom discussed with their physicians or families what to do in the event of a serious complication. For that reason, some advance care planning questions were added to the brochure. In the rare case when surgery doesn’t go well, family and medical professionals will know how a patient wishes to be treated if they are unable to speak for themselves.
“Our patient and family advisory council felt it was important that everyone caring for a surgical patient would be informed about whether the patient had an advance directive and how to care for that patient if things went poorly,” Schwarze said.
Talking about bad outcomes before surgery can be scary and not all patients will want to do it, she noted, but some patients may feel reassured that this has been done “just in case.”
During the pilot study, patients found that even the tough questions were helpful.
“Our patient and family advisory council was very clear that it was important that patients get all the information they need about surgery and that they wanted to share in the choice about whether to have it,” Schwarze said. “They thought it was important to deliberate and think about all possible outcomes, even if ultimately they concluded that surgery had to be done. Having all the information was so critically important.”
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SIDEBAR:
Talking with a surgeon? Here are 3 kinds of questions to consider asking
Should I have surgery?
What are my options?
What is likely to happen if I do have surgery?
What is likely to happen if I don’t?
In your opinion, will surgery make me feel better?
In your opinion, will surgery help me live longer? If so, how much longer?
What should I expect if everything goes well?
How do you think my daily life will look after surgery - right after surgery, three months later, and one year later?
Will I have any tubes or drains put in during or after surgery? Will I need them at home?
In your opinion, how will this surgery affect my other health problems, such as diabetes or high blood pressure?
After I leave the hospital, what type of care do you think I will need?
What happens if things go wrong after surgery?
Can you describe serious complications and explain what those might mean for me?
If I’m too sick to speak for myself, how can I make sure you know my wishes?
If I decide to appoint someone to make medical decisions for me, what do I need to do to make those arrangements official?
Adapted from QPL, developed with a grant from the University of Wisconsin Institute for Clinical and Translational Research and the Greenwall (Kornfeld) Program for Bioethics and Patient Care.
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The Society for Vascular Surgery® (SVS) is a not-for-profit professional medical society, composed primarily of vascular surgeons, that seeks to advance excellence and innovation in vascular health through education, advocacy, research, and public awareness. SVS is the national advocate for more than 5,300 specialty-trained vascular surgeons and other medical professionals who are dedicated to the prevention and cure of vascular disease. The Society is headquartered in Chicago, Illinois. Visit www.vascularweb.org or email Kay Severinsen, assistant director/communications, at kseverinsen@vascularsociety.org.