Ethics panels tested as they determine seniors' final wishes

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Mary Gustafson, McKnight's Staff Writer
Mary Gustafson, McKnight's Staff Writer
The thorny matter of a resident's end-of-life wishes no doubt keeps many people in the nursing home profession up at night. Whether it's a resident's loved one, a nursing aide, an administrator or an attorney, the widespread lack of advance directives is a burden for a lot of people.

To deal with this emotionally and financially draining process, New Jersey's Office of the Ombudsman for the Institutionalized Elderly currently is working to strengthen an initiative called the New Jersey Stein Ethics Education & Development (N.J. SEED) project, which deploys roving ethics committees to nursing homes that need assistance mediating end-of-life disputes. Starting in the 1990s, the ombudsman has worked to develop these committees, with financial and technical help from the Robert Wood Johnson Foundation and Cooper Hospital University Medical Center.

Amy Brown, a 35-year-old staff attorney in the office, says that utilization of this resource has sagged in recent years, but Brown and the ombudsman, James McCracken, are working with ethicists to spur awareness of their availability and train future committee members.

Brown says the primary objective is to "provide New Jersey's 365 long-term care facilities with access to a skilled and educated regional long-term care ethics committee, and to train ethics committee members and long-term care professionals in ethical decision-making." Since the beginning of January 2012, the office has trained over 400 healthcare workers (some members of ethics committees and others not) in ethical decision-making.

Currently, New Jersey has 10 such committees, which nursing homes can call on when there are family disputes about whether to withdraw life-sustaining treatments such as ventilators and feeding tubes. Typically, a dispute arises when a resident has not made his or her wishes known to facility staff or to other family members.

The four-to-five person teams can include clergy, nurses, physicians, lawyers and ethicists who work together to get a resident's family members — or even facility staff — on the same page. The teams help to make decisions that can include deciding whether or not to administer life-saving antibiotics, pulling feeding tubes, turning off ventilators or even hospitalizing a resident.

“This mechanism is designed to give residents what they want,” Brown told me. “If you were in this position, wouldn't you prefer that a skilled, trained, multidisciplinary team were trying to get to the bottom of what your wishes were?”

As an attorney on a committee, Brown says she relies on members of the clinical team for their medical expertise when she helps families make decisions.

“We have to figure out wherever possible, what the resident would have wanted, based on a number of factors. If there's no evidence of what that person wanted, you default to what we call ‘the best interest standard,' which is whatever we decide is in the resident's best interest,” Brown explains.

Brown says her office recognizes that the system is not sustainable — plenty of data and research confirms that people are not dying the way they would have wanted.

“Ethics committees save facilities a lot of time and energy that could be better spent caring for other residents,” Brown emphasizes.

End-of-life decisions aren't just hard for a resident's family. They're hard for the staff members who interact with them day in and day out, and that can take a toll on worker morale.

Click here for a list of New Jersey ethics committees, and here for more information about the program. For additional questions, email Brown at amy.brown@advocate.state.nj.us.

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McKnight's Daily Editor's Notes features commentary on the latest in long-term care news. Entries are written by Editorial Director John O'Connor on Monday and Friday; Staff Writer Tim Mullaney on Tuesday, Editor James M. Berklan on Wednesday and Senior Editor Elizabeth Newman on Thursday.

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