Guided Dying: Helping the Families of Terminally Ill Patients Face Death with Dignity

December 2022 Vol 13, No 12 —December 20, 2022



Kerry Forrestal, MD, MBA

Guided Dying” is a practice that can help the families of terminally ill patients to come to terms with the active dying process in a relatively short time, according to Kerry Forrestal, MD, MBA, an emergency medicine physician in Salisbury, MD.

“There is no textbook definition of guided dying,” he said. “This is something that, because of my interest in palliative care and my experiences over the past 43 years, I’ve started to do in the emergency department that actually has applicability to a lot of different situations.”

At the Academy of Oncology Nurse & Patient Navigators (AONN+) 13th Annual Navigation & Survivorship Conference held in New Orleans in November, Dr Forrestal discussed the importance of creating a family- focused environment in which family members can participate, and patients can pass peacefully. To the extent possible, guided dying can even turn the process into a positive experience through sharing and remembering the joys of a person’s life while bearing witness to its passing.

“We all have chapters in our lives, and we’re all going to get to the last chapter. But my last chapter will not be the last chapter of my daughter’s life,” he said. “My last page can either be a page that’s sorrowful, tragic, and traumatic, or it can be an affirmation of the time I lived. Guided dying tends to move us toward that affirmation.”

Avoiding Family Conflict

A Medical Orders for Life-Sustaining Treatment (MOLST) form is a medical document that specifies the end-of-life treatments that someone does or does not want. It is important to note that MOLST forms can and should be honored even if coming from other states.

“In looking through the litigation literature, you’ll see numerous cases where somebody has sued for disregarding a MOLST form that was properly enacted,” he said. “This is called wrongful prolongation of life.”

According to Dr Forrestal, ensuring that a patient has a MOLST form and a hospice plan in place can help families to avoid significant conflict at the end of their loved one’s life.

When a patient has made a choice about the way they want to die, that decision should be respected, even when it is hard for family members to accept, he added. And when dealing with death, the “patient” becomes the entire family.

Enacting Guided Dying

Guided dying follows a certain framework that starts with taking the temperature of the room.

“This will play to the strengths of every navigator I’ve ever met, because you guys are experts at taking the temperature of the room,” he said. “When you sit down with a family, you know who the problem is going to be and who’s going to help you. You know how the personalities are going to play out.”

Figure out who the allies are, who is the leader of the group—perhaps the matriarch or patriarch—and who’s not on board, if anyone.

He emphasized the importance of being mindful of safety, particularly when in a patient’s home or in any environment in which the navigator is outnumbered. “I’ve never seen it come to blows, but I’ve seen it come close,” he said.

Next, change the conversation. If there is anger, validate it, but don’t encourage it. Redirect the anger and remind the family that “we’re all here for the patient”; reframe the conversation from “you versus me” to “all of us versus the situation,” and if someone is really outraged, “just get them out of there,” he advised.

Address the environment, and bring down the stimulation in the room as much as possible. This includes dimming harsh, clinical lighting, as well as any unwelcome noise, and bringing in chairs for the older or disabled family members.

Next, clearly define the situation. “People sometimes think, ‘we’re in the hospital now. They’re going to fix it,’” he said. “No, we are not going to change the outcome; the patient made a choice, and we need to respect it.”

He noted that the process of guided dying never hastens natural death; rather, the goal is to not prolong the process of death. “There is one thin caveat to that,” he noted. “Within reason, if you need a little time for someone to get there—a family member is traveling from a town over—that’s fine. There’s nothing worse than having a family member come in too late.”

According to Dr Forrestal, you are there to attend the passing, not to prevent it. Give family members permission to accept what is happening. One of the largest hurdles is that the family think they are “giving up,” so reassure them that they are not.

Learn who the patient is (not was), and ask family members if that person would want to prolong this process. In many cases, the answer is obvious; it might just take a nudge to help them realize that.

“Let them know that it’s ok to let go,” he said.

Empower the family to the extent possible, and give them the ability to make choices. Choices give agency; if a patient is still reasonably stable (ie, still on oxygen), offer the options of admittance to the hospital, transfer to hospice, or transfer home. But be prepared to roll with the punches; if the patient starts to lose ground, it’s best to stay put.

“Make sure everyone is on the same page, and that there are no surprises among the staff,” he said. “Everybody needs to know what everybody else is doing.”

Importantly, do not make promises that other people have to keep (ie, reconsider transfer of a patient who has already coded 3 times).

Approaching Dying

Set expectations; the most important element here is that the family understands clearly what will happen. Detail what is about to happen for them, and prepare them for any possibilities, including gasping/reflexive respirations, seizure, possibility of soiling, and skin color changes.

“As long as they know what’s coming, it’s not going to hit them like it would otherwise,” he said.

Position the patient with their head tilted up to avoid the “death rattle,” which can be especially disturbing to family members. “The death rattle is just secretions. If they’re lying flat, it can irritate the airways, which makes that horrible noise,” he said. “It can also cause coughing, gagging, and even vomiting, all of which is going to make this whole thing worse.”

When approaching dying (going from oxygen/medications to “off”), do not try to start the process with a hyperoxygenated patient. “This just prolongs the process and discomfort of the family; it’s not going to change the outcome,” he said. Never hasten death with medications, and turn off anything supporting life.

Monitors can be useful. “Even turning on a pulse oximeter can be helpful,” he said. “The family can watch it as the heart rate slows and the pulse Ox comes down. It’s telegraphing what’s coming, and it lets them prepare.”

Be prepared for the wild cards. If there is a possibility you could get pulled away, warn the family of that possibility. “It won’t be a problem as long as you let them know it can happen,” he emphasized.

The patient could suddenly improve, or a latecomer could barge in and upset the entire process, exclaiming that “someone needs to do something; we need to save her!” If that happens, go back to the beginning, take the temperature of the room, find your allies, and sit that person down.

“The Last Sense to Go”

“After 43 years of doing this, I’m firmly convinced that hearing is the last sense to go,” said Dr Forrestal.

Once everyone is on the same page, the lights are set, and all medications have been turned off, ask the people in the room to tell you about the patient’s life. Start them off with, “I never got to know her, tell me about her,” he said.

“Everybody has a family story,” he added. “Ask them to tell those stories.”

Typically, this process will become self-sustaining, and the room will be filled with people talking about things that they loved about this person. It will eventually taper off, so do not force it.

Closure is a final and crucial part of guided dying. Punctuate the closure of the process, and do not rush it. Listen to the heart with a stethoscope, take the pulse, and say clearly, “I’m sorry. They’re gone.” It’s important that the family see something being done that they identify as medical, and it’s up to the medical professionals to give them that closure.

“We all have to leave this world,” said Dr Forrestal. “I can’t think of a better way to do it than to the sounds of the voices and laughter of our loved ones.”

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