When Cancer Care Goes Wrong: Resolution Programs

Susan London

October 31, 2019

SEATTLE — New initiatives called communication and resolution programs are leading to more rapid, transparent, and productive responses when patients experience harm during the course of medical care, according to Thomas H. Gallagher, MD, associate chair for Patient Care Quality Improvement, Safety and Value at the University of Washington, Seattle.

Thomas H. Gallagher, MD

"We all wish cancer care went perfectly for every patient, but despite our best efforts, care breakdowns are inevitable. And we all wish that when something goes wrong in care, we would be open and honest with the patients and families, but turning that principle into practice is much, much harder than any of us would hope," he commented.

Gallagher spoke during a panel discussion here at 2019 JADPRO Live, the annual meeting of the Advanced Practitioner Society for Hematology and Oncology (APSHO).

"You may think as advanced practitioners in oncology, you are already pretty good at this because you are used to talking about bad news," he told the audience. "But there's a fundamental difference between sharing bad news and talking about a harm event, and that difference is, with a harm event, you may have been responsible for what happened, and that really ups the ante in terms of the emotion handling."

Discussing Harm Events

Despite some improvements in the quality and safety of care since the landmark Institute of Medicine report on medical errors in 1999, harm events (also called adverse events or complications) are still very common and often preventable. "Why is that? Why have we struggled so to improve the quality and safety of healthcare? The most important reason is that when something goes wrong in care, we are not always open, we are not always learning," Gallagher proposed.

"When it comes to talking to patients about harm events, we are all in a state of unconscious incompetence. We are not nearly as good at this as we think," Gallagher suggested.

A revealing 2007-2009 survey of 1150 physicians and patients who had conversations about adverse events in the COPIC 3Rs (recognize, respond, and resolve) disclosure and compensation program found that the physicians thought these discussions went quite well and were unaware that the patients had a considerably less rosy assessment.

Oncology advanced practitioners cite a variety of challenges around communicating with patients when something has gone wrong in their care, Gallagher commented. Those challenges include legal issues, administrative restrictions, not knowing how to proceed, worrying about how much the patient will understand, and clinicians generally not wanting to admit that they made an error.

"When we don't handle these conversations well, it's like pouring salt in patients' and families' wounds. It makes things worse for them, it makes things worse for clinicians. It clearly makes us more likely to be sued when we are not open and honest with patients and families," Gallagher commented.

"It's a lost opportunity for learning. And fundamentally, the public trusts us to be a self-regulating profession, and we've lost that trust, they are not confident that when something goes wrong, we'll respond appropriately," he said.

Communication and Resolution Programs

"Communication and resolution programs are important emerging initiatives that give us the tools and resources to take our commitment to transparency, patient-centeredness, and learning after something's gone wrong in care, and turn those principles into practice," he explained.

Key elements include immediate event reporting; open, ongoing communication with patients and families; good event analysis that focuses on system issues; quality improvement through system solutions and disseminated learning; proactive offering of compensation for harm events due to medical errors; support for healthcare professionals (care for the caregiver); and extensive, ongoing involvement of patients and families.

For most clinicians, the necessary openness does not come naturally, Gallagher suggested.

"The problem is that every single one of us comes from the factory hardwired with a set of reflexes so that, when something goes wrong, we want to keep things to ourselves, we want to rationalize, we want to minimize. These reflexes get in the way of having those open and honest communications with patients and families that we aspire to," Gallagher noted. "Practicing and learning new skills is very important for rewiring these reflexes."

Ideally, the communication and resolution program will address patients' and families' needs for truthful and accurate information, emotional support (including an apology), and follow-up, potentially including compensation.

The humanity of these programs is critical, Brandelyn Bergstedt, associate director of patient experience at the Seattle Cancer Care Alliance, told the meeting. As patients, she and her daughter were on the receiving end of several medical errors.

"The hospital openly discussed with me all the ways in which they reached standard of care. They had my file open, they pointed to each incident. They were transparent. They were emotional. But above all, they were human," she recalled. And because of that, she never pursued punitive actions or a lawsuit.

"If hospitals operate like a machine, patients will expect perfection, but if you can be human, we want to be human with you," she commented.

Improving the Culture of Safety

"Communication and resolution programs in general are improving the culture of safety," commented Katie Colleen Maletich, MBA, BSN, RN, director of quality and safety at the Seattle Cancer Care Alliance. She moderated the panel discussion at the meeting.

Katie Colleen Maletich, MBA, BSN, RN

These programs "are increasing the focus on systems issues as opposed to human issues, which is going to increase the safety of organizations overall, especially by involving patients and families in care and including care for the caregiver programs or second victims of vicarious trauma or whatever you want to call it," she said.

Most healthcare organizations already have various elements of communication and resolution programs in place, Maletich told Medscape Medical News.

For example, virtually all organizations have some process for performing root causes analyses of harm events, and many have some mechanism for supporting their healthcare professionals, as well as patient and family advisers.

A formal communication and resolution program optimizes these elements and pulls them all together into a rigorous, structured format. "But I also want people to be encouraged that you don't have to have this huge structure created to start taking steps," Maletich continued.

"As we heard today, just starting with that initial conversation and speaking from the heart and maintaining that relationship of trust with the patient can go really far," she added.

Importance of Preparation

For successful conversations with patients about harm events, clinicians should prepare, explain the facts, be honest and truthful, convey empathy, and address prevention of future events, Gallagher recommended.

The leading reason why these conversations go poorly is a lack of planning and preparation. "The most important thing before you talk with a patient about a harm event is to get ready and get some help, because these are very complicated conversations to do well," he advised. Other pointers include soliciting team members' views, planning roles for the discussion, advocating for full disclosure, anticipating patient questions, and avoiding jargon and blame.

Patients ultimately want information, emotional support, and an understanding that the organization and clinician care about what happened, he summarized.

"Initially, when patients come to get care, there's a level of trust that's developed with their providers. And when something unexpected happens, there's a questioning of that trust and that trust becomes very tenable," noted Stephen Lovell, MS, patient adviser (volunteer) at Seattle Cancer Care Alliance, who also took part in the panel discussion.

"It's critically important the communication happens immediately, that you play the role that you normally play as a caregiver and you keep that communication going," he said. "The worst thing that can happen is if the physician or the advanced practice provider steps away and tries not to say the wrong thing and just gets very defensive because that's where that trust gets lost. And the longer that goes on, the harder it is to build that trust back."

A key component of communication and resolution programs is care for the caregivers, who are also traumatized by the harm event, Lovell said.

"When there is a medical error or something unexpected happens, it's not just the family and the patients that are going through something emotional. It's the staff also. So it is critical to ensure that care is given to the staff who are involved in that situation too because, obviously, you are in this business because you are caring people and you want to help people, and when something unexpected happens, it's a blow," he elaborated. "So if that immediate and ongoing communication happens with patients and families and also with staff, there's a healing that goes on hopefully on both sides as they move through the process."

Impact on Lawsuits

"There was a fear that being more open would lead to just an avalanche of lawsuits, but the literature now is really clear that programs like communication and resolution programs in the aggregate decrease the frequency of lawsuits and, for lawsuits that are filed, help resolve them faster and for less money," Gallagher commented.

That makes sense given that patients and families commonly sue because they feel they have not been taken seriously and told what happened, and believe that nothing has been learned from the event, he added.

"That doesn't mean that these programs are silver bullets," he continued.

"There will be situations where it's the organization coming forward to tell the patient about a problem that brings it to the patient's attention and leads to either a lawsuit or a payment outside of a lawsuit that might not have happened if everyone just sort of kept their mouth shut," he acknowledged.

"But these programs are economically attractive for organizations around their overall liability expenses," he added.

Gallagher, Bergstedt, Maletich, and Lovell have disclosed no relevant financial relationships.

2019 JADPRO Live: Panel Discussion: When Things Don’t Go as Planned. Presented October 25, 2019.

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