Making decisions in an ICU situation can be difficult, but Susan P. Shapiro, Ph.D. explains how to choose the most qualified surrogate decision maker.
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The average age of an individual in an intensive medical care situation is his 60s, according to Susan P. Shapiro, Ph.D., a research professor at the American Bar Foundation. For that reason, it’s critical to designate a surrogate decision maker who can and will effectively advocate for desired medical care.
Many times, it’s a matter of life or death.
“It’s the ultimate decision,” said Shapiro, who resides in Buchanan, in southwest Michigan, and commutes to her job at the Chicago-based foundation.
“It’s the biggest life-and-death decision you can make,” she added. “On one hand, it’s extremely important; and on the other hand, it’s the most difficult decision to make. It grabs the family when it is least able to handle the situation and it takes the greatest resources that a family can have.”
Shapiro, who attended Detroit schools and graduated from Southfield High School, has recently published Speaking for the Dying: Life-and-Death Decisions in Intensive Care through the University of Chicago Press. She holds a bachelor’s degree from the University of Michigan and a master’s degree and Ph.D. in sociology from Yale University.
For the book, Shapiro examined the interactions between doctors, surrogate decisions makers and families of patients who were brought into the ICU of two urban hospitals in the Chicago area. One was an open neurological ICU and the second was an ICU in which doctors dealt with conditions not involving brains or hearts.
In all, she and a research assistant studied approximately 1,000 cases involving this medical dynamic to fully understand how doctors communicate with family members about life-and-death situations and how families respond and make decisions about care for their loved ones.
“Most of the patients in the study had not named their legal decision makers,” Shapiro said, adding that the medical decision process becomes easier when an individual designates someone to make those decisions on his behalf.
Creating a health proxy directive (also called a durable power of attorney for health care or designation of a patient advocate) doesn’t require a lawyer or notary. Hospitals typically have proxy directive forms for free, and forms are also available online for free.
Shapiro noted she was surprised to find that for almost half of patients with advance directives, those directives made no discernible difference in easing the decision-making process or helping to clarify the patient’s wishes.
Among the remainder for whom the directive did make a difference, she said, it was at least as likely to result in undermining the patient’s wishes as in honoring them.
“It is rarely possible to anticipate the complex choices at the bedside in documents drafted when patients are still healthy,” she said.
Choosing the Right Surrogate Decision Maker
Shapiro enumerated qualities to consider when choosing an individual you can entrust to make life-or-death decisions on your behalf. Some of those characteristics include choosing an individual who knows you very well and understands your values, preferences and fears. Surrogate decision makers also need to be good listeners and communicators, intelligent, open-minded and decisive. They must also be able to process complex, incomplete and sometimes conflicting information and see the larger medical picture.
She has recommendations for those tasked with making medical decisions for a loved one in the ICU.
“It’s extremely important to be around when the physicians are around,” she said. “Be there from day to day and talk to the doctors. Surrogates obviously need to be prepared to make decisions, and they need to have had a lot of conversations with the patient.”
On the part of hospitals, she recommends they designate specific individuals who can serve as intermediaries between surrogate decision makers, families and medical professionals and can help families navigate what is often a heart-rending decision.
And, if faced with a particularly challenging medical decision, families can and should call upon a hospital’s ethics committee.
“That’s an important resource,” Shapiro said. “They do an incredibly good job in helping families with decisions. Often, it’s not offered to families, but if you ask (to speak to the ethics committee), it’s there.”
One Metro Detroit-based organization that can provide Jewish families with guidance on making medical decisions on behalf of their loved ones is the Jewish Hospice and Chaplaincy Network in West Bloomfield.
Natalie Rosenfield, director of patient care at the network, concurs with Shapiro that it’s important for families to have ongoing conversations about what their desires are should they be faced with a life-or-death medical situation.
“My recommendation is to have that discussion with your loved one,” she said, and have many conversations about this matter, not just one.
“One of the things we work on is helping families to feel empowered to make decisions,” she added.
Rabbi Joseph Krakoff serves as senior director of the network, which focuses on providing palliative and supportive care, as well as hospice resources. He said the network can assist families with promoting end-of-life discussions. Network social workers can also instruct clients on the questions they should be asking their doctors.
“We encourage people to have discussions while people are well, though making these decisions are scary and (talking about) end of life is off-putting,” Krakoff said. “You also have to make sure you have these conversations with the doctors.”
The chaplaincy network puts families in touch with resources and can also provide Orthodox, Conservative and Reform rabbis who can meet with families and guide them in life-and-death medical situations.
“A lot of decisions (on medical care) have to do with the religious affiliation” in terms of Jewish laws and customs, Krakoff said. “A lot of Orthodox Jewish families would consult with a rabbi, though one rabbi may not agree with another rabbi.
“There are many meetings we have with families” to assist them with medical decisions, Krakoff said. “We take end-of-life decisions seriously, and we take into consideration quality of life.”
Social worker Rosenfield said many families contact the network because they are simply at a loss about the next steps in the process for a patient who may be dying.
“We try to advocate for them, and we let them know they are not alone. Our role is to let them know what their resources are,” she said. “They have an advocate with us.”
Susan Shapiro’s book Speaking for the Dying: Life-and-Death Decisions in Intensive Care is available through the University of Chicago Press at press.uchicago.edu and on Amazon.
To reach the Jewish Hospital & Chaplaincy Network, call (248) 592-2687 or, for more information, visit jewishhospice.org.