Why It Matters
The only way to know what is right for a given patient is to ask what matters most to them. And asking once is not enough.
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What Matters Most in End-of-Life Care

By Lauge Sokol-Hessner | Friday, August 19, 2016
What Matters Most in End-of-Life Care

Statistics can be useful. They can get people’s attention. They can help get your point across.

When The Conversation Project team members speak at community events or with the media, we often cite some statistics that people usually find surprising: 70 percent of people in the US prefer to die at home, yet the reality is that 70 percent are dying in hospitals, nursing homes, or other long-term care facilities.

A study published in 2013 that received some recent media attention found that fewer people in the US died in the hospital in 2009 compared to 2000. Is this progress?

Statistics are always changing. They are open to interpretation. And sometimes they miss the point.

Asking the Right Questions

When looking at statistics about end-of-life preferences, it’s important to probe further. For example, of those who say they want to die at home, is this their top priority? What else is important to them? When did they express their preferences? Were they healthy at that point in their lives? Do they understand the demands of end-of-life home care? Does their family? 

For those people who express a wish to end their days at home but instead die in other settings, it is possible that we — the health care system — failed to respect their preferences. Yet, we can’t just assume this is true as circumstances can change.

Did an initial desire to die at home change after they became ill or as their illness progressed? Did the reality of the burden on their loved ones to provide care at home change their mind? How many of them died suddenly in the hospital, without an opportunity to transition them back into their home? 

Did they tell their care team their end-of-life care wishes? Did the team ask for and document their wishes? Did the team do everything they could to get them home, if that’s what they wanted? Or was the team optimizing care for other, more pressing priorities? If the team wanted to get them home, what were the barriers to doing so? How many of those obstacles could be removed prior to their death? Which barriers were outside the control of the patient, their family, and the care team (e.g., insurance coverage)?

Until we ask and answer these kinds of questions for every patient, we can’t say with certainty that the “70 percent prefer to die at home, 70 percent die in a hospital” statistics represent a problem. And perhaps more importantly, these percentages don’t provide clear guidance on how to improve care at the end of life.  

First, Do No Harm

The only way to know what is right for a given patient is to ask them.

What’s most important to you as you think about how you want to live at the end of your life?

What do you value most?

And asking once is not enough. We must expect that a patient’s answers will evolve as the realities of serious illness influence their circumstances, feelings, and preferences.

One of our primary obligations to our patients is to respect their autonomy as we guide them through the experience of serious illness. To do this well requires the process of shared decision making, which involves the patient understanding the situation and their options, and the health care professionals understanding who the patient is as a person and what his or her priorities are.

The health care system is not designed to ensure that we reliably understand “what matters most” to our patients. We don’t always engage in the shared decision making process with our seriously ill patients that would help us learn this crucial information.

As a result, we often lack the confidence that our patients are making informed decisions. And when we are uncertain, despite our good intentions, we may act in ways that disrespect their wishes.

I believe that health care professionals suffer the worst moral distress when we worry that we’re doing more harm than good. For example, when a patient wants an intervention that we see as having little chance of benefit, but high likelihood of pain or debilitation, it can feel as though we’re inflicting torture. If, on the other hand, a patient declines treatment that we believe could do a lot of good with little risk of harm, we feel we’ve failed to rescue them from unnecessary suffering.

The only way to truly alleviate this moral distress is to use a robust process of shared decision making, so we are more certain that the care we provide matches the patient’s wishes. One woman might, for instance, choose an experimental treatment — even though her care team explained it entails a high risk of adverse effects and little chance of success — because she’s willing to do whatever she can to see her daughter graduate from college. Another woman with the same medical situation may choose to decline the treatment — even though it may extend her life — because she does not want to risk spending more time in health care settings, and instead plans to spend her remaining days at home.

In another situation, a person suffering from severe pain might decline a powerful pain medication because the side effects make it difficult to spend alert, quality time with his family, which is what he values most. Someone else with the same medical situation may have different values and feel that he does not want to suffer any more pain, choosing to accept the medication, even if it leads to sedation and limits his ability to interact with others.

No matter the situation, it is clear that the only way to know what is right for a given patient is to ask them what matters most to them.

Research on people dying at home or in the hospital, compared with their expressed end-of-life care preferences, is worthy of more investigation and discussion of its implications. Further study is welcome and needed.

We don’t, however, need more study to know that if care providers ask every seriously ill patient what matters most to them, and reliably engage them in shared decision making, we’ll have made the kind of progress we can all agree is important — regardless of the statistics about where exactly those patients die.

IHI faculty member Lauge Sokol-Hessner, MD, is an Attending Physician with the Department of Medicine and Associate Director of Inpatient Quality at the Silverman Institute for Health Care Quality and Safety at Beth Israel Deaconess Medical Center. He is co-author of the IHI White Paper, “Conversation Ready”: A Framework for Improving End-of-Life Care.


You may also be interested in:

A free IHI Open School course – PFC 202: Having the Conversation: Basic Skills for Conversations about End-of-Life Care

Putting “Conversation Ready” into Practice: An Interview with Dr. Lauge Sokol-Hessner

More about The Conversation Project

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