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Disrespect at the End of Life Is Preventable Harm

By Lauge Sokol-Hessner | Thursday, March 21, 2019

Lauge Sokol-Hessner, MD, is Assistant Professor of Medicine and Associate Director of Inpatient Quality at the Beth Israel Deaconess Medical Center in Boston, MA. He is also co-author of the IHI white paper, “Conversation Ready”: A Framework for Improving End-of-Life Care (Second Edition). In the following interview, he describes how respectful care is the best end-of-life care.

What does it mean for an organization to be “Conversation Ready”?  

If you ask Americans, about 90 percent or so have preferences for the kind of care they want to receive at the end of their life, but only 30 percent have written those wishes down or talked with a loved one about them, and only about 10 percent or so have talked with a doctor or their health care team. There is a real gap between what people want and what their care teams know about their wishes.

Becoming Conversation Ready means health care systems and professionals learning to reach out, engage, and help guide people through the process of expressing, recording, and respecting their wishes about the kind of care they want to receive throughout serious illness and at the end of their life. This process is often called advance care planning.

What does it look like for an organization to be Conversation Ready?

If we were to imagine someone had just received a diagnosis of a serious illness, a Conversation Ready organization would have a systematic way of making sure several things happened. To start, they’d work on helping that person select a health care proxy, or a durable power of attorney, someone to speak on their behalf if they ever lost the capacity to speak for themselves. They would proactively communicate with that patient about their illness so that they understood the diagnosis, the prognosis, and their treatment options. 

They would also ask that patient about what mattered most to them. What are their goals, values, and preferences? Then they would then use all the information they had to guide the patient through a shared decision-making process to ensure that whatever decisions were ultimately made about treatment and next steps were aligned with what mattered most to the patient.

Beth Israel Deaconess Medical Center (Boston, MA, USA) was one of the pioneer Conversation Ready organizations. How have you seen your work there evolve over time?

Conversation Ready has evolved in how we think about the principles, and how we conceptualize the desired outcome. There are five principles: exemplify, connect, engage, and steward, all of which lead to respect, which is the outcome we want.

One of the big shifts is a better understanding of how the first four principles work together in service of respectful care: 

  • Exemplifying the work means doing advance care planning for ourselves. This means, for instance, making sure that we as professionals have selected our own health care proxies and had conversations with our loved ones about what matters most to us. This helps us understand what our patients and their families are going through.
  • Through exploring the process ourselves, we can better connect with our patients and understand what might be hard for them, building better therapeutic relationships through cultural humility.
  • Engaging has to do with how we identify patients who need to be asked about what matters most and how we communicate about their serious illnesses and what matters most to them.
  • Steward is what do we do with the information we learn from our patients, so we can easily find it again down the road.

All of this is to help guide care in a way that’s respectful.

Another big shift is that we’ve realized that not being respectful is a form of preventable harm. I think, for many of us, that’s a new way of thinking about end-of-life care and about advance care planning. When we don’t do it well, there are harmful consequences for patients and families.

Would you describe a scenario that illustrates what you mean by disrespect being a form of preventable harm?

Let’s imagine a patient who has a serious illness like an advanced cancer. The patient may not recognize they’re at significant risk of complications from their cancer. As a result, without having clear communication about their prognosis, they might make choices about their care and about their life that are uninformed and out of context.

Without fully understanding the gravity of their situation, they may spend time in ways they wouldn’t choose if they knew their remaining time was short. For example, if they don’t fully understand the chances of certain treatments working — like chemotherapy — they may choose to pursue those, not gain much benefit, and instead suffer lots of side effects. They may lose the opportunity to complete their life in the ways that matters most to them. They may not be able to spend time or communicate with loved ones. They may end their lives in a hospital or health care facility instead of at home. There are a lot of things that could go poorly, and if they had had more information ahead of time they might have made different choices.

If we aren’t forthcoming with information, if we don’t assist in guiding people through the decision-making process, we miss some important opportunities. Being Conversation Ready means we make sure that we are giving people the opportunity to always make informed decisions.

How have you seen organizations incorporate Conversation Ready into some of their other strategic priorities?

There are many ways that this work can support other initiatives in health care organizations and promote high-quality care. Fundamentally, the work is about ensuring that we are taking care of people the way they would want, which is about patient- and family-centered care. By reliably providing respectful end-of-life care, we avoid the harms of disrespect, making care safer. Focusing on “what matters most” to patients is a core part of providing higher value care; providing the right care, at the right time, in the right place, helps us minimize unnecessary or inefficient care.

Doing this work can help prevent complications, unnecessary readmissions, and other problems that can happen when patients get treatment that they wouldn’t want. For patients who have had experiences that leave them distrustful of the health care system, doing this work can be part of repairing the therapeutic relationship and reassure them they are getting the best care possible.

Becoming Conversation Ready should be a part of population health management and hospital flow improvement initiatives. And not least, when done well, becoming Conversation Ready can also be very rewarding for the involved professionals and can generate a lot of joy in work. It’s deep, meaningful work that’s about taking excellent care of our sickest patients.

Editor’s note: This interview has been edited for length and clarity.

Learn more from Lauge Sokol-Hessner, MD during session QC3: Is Your Organization Conversation Ready? at the 2019 IHI Summit on Improving Patient Care (April 11–13, 2019 in San Francisco, CA, USA).

You may also be interested in:

IHI white paper, “Conversation Ready”: A Framework for Improving End-of-Life Care (Second Edition)

End-of-Life Care: When We Don't Want What Our Patients Want

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