Dying in a hospital: crucial conversations and decisions

About one in three Americans will die in a hospital, statistics suggest. What is an everyday scenario for hospital clinicians might be unimaginable for those of us who have never lived through that disorienting anguish when the patient is your loved one.

Dr. Ann Jennerich, a pulmonary and critical care specialist with UW Medicine in Seattle, recently was asked by a medical journal to write about how clinicians should communicate with family members about what will happen after a decision is made to discontinue a patient’s life-sustaining care.

The published paper combines literature-based information with opinions formed by Jennerich's experience. She works at Harborview Medical Center, a major West Coast hospital for stroke, emergency and trauma care.

“I go through this process a lot,” she said, “so I try to walk people through it — what dying in the hospital will be like and how we manage things. There isn’t much direct evidence about what doctors should say or not say, and there’s very little formal training about how these exchanges should go. But you can generate a lot of distress for a family member by having an ill-planned conversation.”

For example, the wealth of life-extending technologies available can inadvertently complicate the decision-making process. If a clinician first presents a family with a menu of medical options that all need explaining, it can sow confusion and frustration, Jennerich said.

Clinicians’ main job in these conversations, she suggested, is to ask family members about the patient’s values and preferences for treatment. This helps establish a shared understanding of the patient care that will ensue, and typically leaves family members more satisfied with the quality of their loved one’s death.

For family members, a common unknown is how much time the dying process will take, according to another just-published paper to which Jennerich contributed.

Directly addressing this question helps to set an expectation and allows families to anticipate whether others who are farther away can get to the bedside before death occurs, Jennerich said. She hastened to add, though, that clinicians can only offer an estimate. Much depends on the dying person’s condition and plans to discontinue the assistive technologies in use. For example, a patient with a stroke who is breathing on their own, even in a coma, might live several days until their organs fail. Other patients will have less time.

Hospitals typically have protocols that define appropriate steps for untethering patients from devices that assist with breathing and blood circulation. But protocols are not uniform across facilities, so families should seek clarification about how decisions are made and what input they might have.

Removing someone’s breathing support is such an issue. Clinicians and patients alike vary in their opinions about whether to end support suddenly or gradually.  Different cultural and religious sensibilities exist toward the discontinuation of life-sustaining therapies: Some emphasize preserving life at all costs while others prioritize comfort. These decisions would lead to different pathways of care.

In her work, Jennerich said, the goal is to avoid causing distress for the patient and their family members. Before a patient’s breathing tube (inserted through the mouth into the throat) is removed, medications are provided so the patient is as comfortable as possible. Medications may include opioids, which can lessen pain and reduce breathlessness, as well as anxiolytics, designed to reduce anxiety. Support from the ventilator is gradually reduced and then, once the patient appears comfortable, the breathing tube is removed. The entire process may take no more than 30 minutes.

Families also should be made aware of respiratory sounds that are normal in the process of dying.

“It can sound like somebody is suffocating or choking, and of course this is scary for folks who’ve never seen it before,” Jennerich said. “Those sounds and the appearance of agonal respirations that follow are normal manifestations of the dying body. It doesn’t mean that the person is suffering or that we should be medicating them. 

In this fraught time, nurses are on point to field family members’ questions, imbuing an impersonal hospital room with humanity and providing information that might, to some degree, help people manage their despair.

“When you’re going through this process, you don’t fully hear most of what people are saying,” Jennerich said. “We are glad to come back and revisit conversations and questions as they arise.”

In essence, she said, nurses shoulder the care of patients and families simultaneously.

“The nurses are frequently checking in to manage the patient’s symptoms. They’ll use their clinical experience to know when to give the family privacy and when to administer medications. It’s a balance: You need to let people be at the bedside and hold their loved one’s hand, but also ensure that the patient is comfortable.”

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