Hospitals focusing more on end-of-life issues

 

McHENRY, Ill.  - Sitting in a hospital bed at Centegra Hospital-McHenry, a hospital chaplain walked 84-year-old Teresa Guardi through the different life-sustaining measures the hospital can take - ventilators, dialysis, CPR and feeding tubes.

"At my age, why should I care about a ventilator?" the Island Lake resident asked.

"Mom, you could live to be 100," her daughter, Pamela Guardi, said from her seat near the door.

"I don't want to live to be 100," she responded. "All my friends would be gone, and young people don't want to deal with it."

What she did want was to only be treated with these methods if the gain outweighed the harm and if she was likely to come out of the treatment with a good quality of life, hospital chaplain Dena Battaglia found out as she walked Guardi through the form granting her daughter the power of attorney over her health care if she's ever unable to communicate her own decisions

"I want to be independent," Guardi told Battaglia. "There's so many things in life that I still want to discover."

As a hospital chaplain for the past 11 years, Battaglia has these conversations all the time.

Every time someone over the age of 18 is admitted to one of Centegra's hospitals, they're asked if they have an advanced medical directive and if they don't, whether they'd be interested in filling one out.

That's how Battaglia ended up in Guardi's room.

Guardi had gone to the emergency room over concerns that several day's worth of diarrhea was dehydrating her, she said.

When she was admitted, she was asked those questions and then offered help in filling one out.

Centegra offers these services free of charge and recently expanded the education to interpreters, nurses and physicians on the subject, said Kristen Kurczewski, an attorney with Centegra Health System and its director of compliance.

The system also plans on offering the education to its staff at Centegra Physician Care offices and some of its specialty care clinics, as well as making sure changes required under the amended Illinois Power of Attorney Act are communicated and implemented.

"We chose to take that on because we care about our patients and we want to provide treatment as our patients choose," Kurczewski said. "Usually when these advanced directives come through, it's a time of crisis. (Having an advanced directive) is a way of taking that burden off the family and the patient."

Advanced directives tell health care providers what treatments patients do and don't want and appoint a person to serve as their voice in case they're ever not able to handle their own health care decisions, and more and more hospitals are advocating for everyone 18 and up to have one.

Senior services, Catholic charities and nursing homes also are stepping up, said Lynn Skubiszewski, a palliative social worker at JourneyCare.

A growing number of the patients she sees already know about advanced directives, she said.

But the conversation should really be happening at the primary care doctor's office, Skubiszewski said.

Rachael Telleen, the project manager for Be@Ease, agrees.

Be@Ease, a campaign housed at JourneyCare Hospice in Barrington, aims to get more young people and the community at large talking about their health care wishes and writing them down, Telleen said. They've made resources available for free on their website.

Telleen also is the coordinator for Physician Orders for Life Sustaining Treatment Paradigm, or POLST, in Illinois, another directive aimed at communicating the medical orders for the current treatment of a patient with a serious illness, as well as a part of the Chicago End-of-Life Care Coalition.

"No one wants to go through life going what if what if, but something could happen to anyone," Telleen said. "It's not just the patient that this affects. It's the family. It's so traumatizing for a family to try to figure out what they would have wanted."

The problem is that these conversations take time, often 30 minutes to an hour and a half, Skubiszewski said.

Battaglia spent about an hour with Guardi and her daughter going over the paperwork, serving as a third-party witness and giving them each copies to hold on to and put in the glove box in case of an emergency.

The conversations can vary widely, said Skubiszewski, who has been in this line of work for 30 years.

Some people are ready to talk about it, but often times she has to warm to it or return after they've had time to think it over.

Sometimes it takes three or four times of nurses or other hospice staff broaching the subject before they're ready.

"They're scared or upset," she said. "They just don't want to think about it because think if they don't think about it, it won't happen."

But advanced directives "can be such a gift to a family," Battaglia said, adding that the advanced directives give family members or whoever is making the health care decisions reassurance.

"They're fearful of making the wrong decision because this is life and death," she said.

Telleen would like to see doctors reimbursed by Medicare and private insurers for having those conversations, and Skubiszewski suggested having these conversations happen more often, perhaps at the Illinois Secretary of State's Office when drivers are asked if they want to be an organ donors, when students graduate from high school or when someone turns 65 and gets on Medicare.

Having advanced directives become a normal part of the health care process could also lead to savings, according to a 2011 study in the Journal of the American Medical Association. It found that advance directives lead to less Medicare spending, a lower chance of dying in a hospital and a more use of hospice care.

"My personal opinion is that there's been such an emphasis on health care in general," Kurczewski said. "There's been a lot of changes in health care and how health care is provided, and this is just one more piece of that."

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