Loyola Medicine opens clinic for end-of-life decision-making

Patients of Loyola Medicine have a new option when it comes to figuring out how to make their wishes known.

Starting in 2017, Loyola has offered an Advance Directive Clinic in which an ICU physician who has a master’s degree in bioethics meets with patients and their families to help them fill out a health care power of attorney form.

Dr. Paul Hutchison, an assistant professor in Loyola Medicine’s division of pulmonary and critical care medicine, meets with patients one day a month for now, although the clinic could be open more often if there is enough demand.

Hutchison said he came up with the idea after three and a half years of treating people in intensive care, with the hope that people would be able to express their wishes before they are too sick to do so. In many cases, that could help them avoid painful, expensive and invasive interventions that would only extend the dying process.

“No matter what we do, at some point everyone will pass,” Hutchison said. “But people get into situations where they’re very, very sick and they haven’t really thought about how aggressive they want the medical team to be. We want to get ahead of this, so we can hear from the patients what they want.”

Primary care doctors ask people about their wishes, but their time is limited, Hutchison said.

“There is such a burden on providers in an outpatient setting to take care of so many things,” he said, from managing multiple medications to learning about new or recurring symptoms. “There’s just not enough time.”

In his half-hour appointments, Hutchison explains the power of attorney form and briefly assesses the patients to make sure they understand what they are doing. Then he helps them explain what they want, and what is most important to them.

“We talk about who the person is, what their values are, the things that bring them joy,” Hutchison said. “We don’t want to commit someone to a series of treatments and procedures merely to keep them alive if that’s not acceptable to them.”

At the end of the appointment, after the form is signed, Hutchison enters it into the patient’s electronic medical record at Loyola so anyone caring for the patient within the health system will have access to it. He gives the patients several copies to give to their family members or any other health care providers from whom they regularly receive treatment.

If Hutchison does not believe a patient has enough understanding to sign the power of attorney, he engages the patient and his or her family in discussion of what they value and what they want, and attaches his notes to the patient’s medical record. It does not carry the same legal weight as a power of attorney, but it can help guide medical staff and family members in their decisions.

“Even if someone doesn’t understand the legalities, they usually understand, ‘Who do you trust?’” Hutchison said.

A health care power of attorney is one of four kinds of advanced directives that can be used in Illinois, said Father William Grogan, the cardinal’s delegate for health care. It is appropriate for everyone 18 years old and older, and tells medical personnel who can make decisions for patients who cannot speak for themselves. It also gives patients the opportunity to set limits and conditions on their agents.

Patients who are receiving treatment for a specific condition can work with their doctors on a POLST (Practitioner Orders for Life-Sustaining Treatment) document.

Living wills allow patients to delineate in advance what they want if they are terminally ill and unable to speak for themselves, and mental health treatment preference declarations allow patients to declare whether they want some forms of treatment for mental illness if they become unable to speak for themselves.

Any of the documents can be used in ways that are consistent with Catholic teaching and respect the U.S. Conference of Catholic Bishops “Ethical and Religious Directives for Health Care,” Grogan said. In fact, the ethical and religious directives encourage Catholics to use advance directives to make sure their end-of-life care is consistent with their Catholic values.

In an email, Grogan said some Catholics think having advance directives leads to euthanasia.
“Actually, it’s a remedy,” he said.

Nancy Flowers, community education program manager at Rainbow Hospice, which is affiliated with Presence Health, has been working with patients on advance directives since federal law mandated that hospitals and nursing homes ask patients about them in 1992. 

Presence recently merged with AMITA Health and became part of St. Louis-based Ascension.

Flowers still facilitates those conversations, and teaches other health care workers and community groups to do so as well. 

“There’s a lot of interest in how to have this conversation,” said Flowers. She has experienced it from both sides, she said, as a social worker and as a daughter with both of her aging parents and as the niece of an elderly aunt. 

“Really, what you want to do is turn it into a conversation,” Flowers said. “You want to help identify the anxieties behind the words.”

Many older adults are more ready to talk about end-of-life care than their adult children think.

“They’re waiting to have this conversation,” Flowers said. “They’re waiting for someone to bring it up.”

When older people ask how to start a conversation about advance directives and end-of-life care decisions with their older children, Flowers said she recommends that they be direct.

“Just tell them that you want to sit down and talk about this,” Flowers said. “I’m not sure the Thanksgiving dinner table is the place to do it.”
But waiting for a crisis is not a good idea either, she said.

“At the most intense moments in the hospital is not the best time to be doing this — and that’s understatement of the year,” she said.
Hutchison said his clinic creates an environment to make it easier.

“These are hard conversations,” he said. “No one really likes to talk about it. This is a safe place.”