EXECUTIVE SUMMARY
Patients and family members were surprised that postoperative recovery was so difficult, and lacked knowledge on advance directives and the fact that they could decline major surgery.
- Simply discussing risks, benefits, and alternatives doesn’t fully inform the patient.
- The informed consent process doesn’t always address whether surgery will improve quality of life for the patient.
- A checklist approach is one way to integrate patients’ goals into decision-making.
When researchers created a Patient and Family Advisory Council to identify preoperative decision needs, they were surprised at the feedback that touched on autonomy and informed consent.1
“Many of the patients in our qualitative study felt they had no choice about having major surgery,” says Margaret L. (Gretchen) Schwarze, MD, the study’s lead author. Schwarze is associate professor of surgery at University of Wisconsin School of Medicine and Public Health in Madison.
Patients and family members were also surprised that postoperative recovery was so difficult. Many lacked knowledge about the use of advance directives.
“We believe that informed consent should cover all of the important questions,” says Schwarze. “Yet it really doesn’t, when you look at the decisional and informational needs identified in our study.”
The researchers came up with 11 questions for patients to ask, such as, “What are my options?” “What should I expect if everything goes well?” and “What happens if things go wrong?”
“I believe the requirements of informed consent fall very short of patients’ decisional and informational needs,” says Schwarze. “Just discussing risks, alternatives, and benefits misses the mark.”
As a vascular surgeon caring for older patients with multiple comorbidities, William Doscher, MD, says surgical decision-making is “an issue we face absolutely all the time. For many older patients, surgery doesn’t do anything for them.”
It could be that surgery will give the patient another month or two of life, but reduce the quality of life. “But how do you talk to them about having the procedure? What’s the decision-making?” asks Doscher.
Autonomy and informed consent are two central ethical issues. “Most informed consents are really not informed. That’s something that is never really discussed,” says Doscher. “In my experience, we don’t do a very god job of this.”
Patients don’t always fully understand the risks and benefits of a procedure even after a lengthy discussion. Sometimes this is because their quality of life isn’t explained in plain talk.
“I think a lot of patients, if it was explained to them that, ‘You’re not going to get much out of this — maybe a month or two, but you are going to be miserable’ — would say, ‘Maybe I don’t want to do the surgery,’” says Doscher.
Doscher is associate professor at Hofstra-Northwell School of Medicine and chair of ethics in the Department of Surgery. Recently, he called an ethics consult regarding one of his own patients: A woman with vascular disease had surgery scheduled for a below-the-knee amputation, but shortly before the procedure, changed her mind.
“Her children got very upset, and wanted to prolong life at any cost. I said, ‘She’s declined the surgical procedure, I’m not doing it,’” says Doscher. The surgery was finally done at the request of the surrogate, as the patient at that point in time had no capacity — even though that did not respect the patient’s wishes when she had capacity several days prior. “I went ahead to relieve the patient’s pain, which might reflect a certain degree of paternalism, but not everything is black and white,” says Doscher. The patient died from a massive GI bleed a few days later.
“So what was the value of this?” he asks. “It probably sped up her demise, if anything. This is an example of what goes on.”
To make an informed decision, patients need to understand the benefit of the surgical procedure, compared with not having the procedure. “We can do an operation, but is it of any value to the patient?” says Doscher.
Withholding a therapeutic modality the physician believes isn’t in the patient’s best interest is ethically acceptable, he emphasizes. “No physician has to give a therapy, surgical or otherwise, if they feels it’s not appropriate. A patient can ask for it, but you do not have to give it,” says Doscher. “And guess what: You can also withhold care if you don’t think it’s of any value.”
If a patient is on dialysis but the physician believes it’s of no value to the patient, the physician doesn’t have to continue it, adds Doscher. “Lots of people are more comfortable with not giving a therapeutic modality, than to withdraw. However, they are ethically exactly the same,” he says.
Doscher uses this aphorism with residents: “Some of the best operations I have done are the ones I haven’t done.”
“You can do all sorts of operations. But if you are in the ICU for the next couple of months, what good is it?” he asks.
It doesn’t make sense for a patient to have surgery for colon cancer if he or she won’t survive more than a month due to a heart problem, for instance. “Everything is on case-by-case basis, and it all comes down to informed consent,” says Doscher. He gives the example of a patient with cancer diagnosis and a life expectancy of one or two years, and an aneurysm which will likely kill the patient in the next week or two, which can be surgically repaired. “Maybe we should do that, to give the patient a year or two of decent life,” he says. “That’s a gamble that I think I would take.”
The key question that patients should be asking is, “What am I getting out of this? Am I just getting an operation? Or will this get me back with my family or give me some quality of life?” says Doscher. Similarly, surgeons should be asking, “Am I doing something to give the patient a better quality of life?”
Doscher discusses the possibility of doing an amputation with a patient’s family, and says words to the effect of: “I can remove the leg, but what are we doing it for? Let’s just make her comfortable.”
“I can very often see that the weight is lifted from their shoulders,” he says
Andrew Courtwright, MD, PhD, a physician at Massachusetts General Hospital’s Institute for Patient Care, says providing high-quality, appropriate surgical care to elderly patients with serious illness requires determining which interventions are aligned with patients’ core goals.
“Surgeon, patient, surrogate, and systemic factors contribute to communication challenges and non-beneficial surgery at the end of life,” says Courtwright. These factors include time constraints, inadequate provider communication skills and training, uncertainty about prognosis, patient and surrogate anxiety and fear of inaction, and limitations in advance care planning.
“Surgeons could accomplish more effective communication with seriously ill elderly patients if they had a structured, standardized approach,” says Courtwright. A “checklist” approach to exploring patients’ preferences and integrating those preferences into surgical decisions might include the following:
- clarifying the patient’s prognostic understanding and expectations for recovery,
- identifying the patient’s priorities and goals for treatment,
- determining health states that the patient would find unacceptable,
- recommending palliative treatment alongside life-prolonging treatment, as best aligned with the individual patient’s goals and wishes, and
- affirming the clinician’s commitment to the patient’s well-being.
Rather than expecting clinical ethics to be involved in a day-to-day basis in these conversations, Courtwright suggests ethicists partner with senior surgeons in developing and modeling structured conversational guides. These can be used to train surgical residents in how to communicate with seriously ill patients.
Courtwright envisions an intensive one-day course, followed by personal coaching for a designated period of time. “Such training could include handling intense emotions from patients and their families, discussing prognosis, and delivering basic palliative care interventions,” he says.
REFERENCE
- Steffens NM, Tucholka JL, Nabozny MJ, et al. Engaging patients, healthcare professionals, and community members to improve preoperative decision-making for older adults facing high-risk surgery. JAMA Surg 2016; 151(10):938-945.
SOURCES
- Andrew Courtwright, MD, PhD, Institute for Patient Care, Massachusetts General Hospital, Boston. Phone: (617) 732-6770. Fax: (617) 582-6102 Email: [email protected].
- William Doscher, MD, Associate Professor, Hofstra North Shore-LIJ School of Medicine. Email: [email protected].
- Margaret L. (Gretchen) Schwarze, Associate Professor of Surgery, University of Wisconsin School of Medicine and Public Health, Madison. Phone: (608) 265-4420. Fax: (608) 265-1148. Email: [email protected].
Patients and family members were surprised that postoperative recovery was so difficult, and lacked knowledge on advance directives and the fact that they could decline major surgery.
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