When a nursing home resident can no longer make decisions, someone else has to make the tough ethical choices. Should the patient's life be prolonged with a ventilator or feeding tube? Has the time come to remove life support? What would this person have wanted? The family and the nursing home staff can wind up at loggerheads, unable to take the next step.
The state's ethics committees are helping families and nursing home staff make these tough decisions. The regional panels are made up of trained volunteer professionals with diverse backgrounds, including nursing, social work, long-term care, and clergy. They work under the direction of the state Office of the Ombudsman for the Institutionalized Elderly, which advocates for patients in long-term care facilities.
The ethics committees "are available to people to help them through an extremely difficult and hard time and help them critically think through issues and make decisions that are ultimately resident focused," said ombudsman James McCracken.
McCracken wants to raise the visibility of these ethics committees and encourage nursing homes to call on them to mediate more often. To do so, he is presenting this month training sessions, "How to Make Ethical Decisions at the Bedside," taught by clinical ethicist Dr. Helen D. Blank and designed for ethics committee members and nursing home staff.
McCracken's initiative comes at a time when New Jersey is paying increased attention to the quality and cost of end-of-life medical care. New Jerseyans tend to spend more time in intensive care units of hospitals and see more specialists in their final months of life, which is why the state's end-of-life spending is among the highest in the nation.
A new law gives New Jersey residents the final say on their medical care. The planning document, called the "Physician Orders for Life Sustaining Treatment" or POLST, details the individual's wishes for the quality of life and medical intervention in their final days. The document has the authority of a medical order and follows the patient from one care setting to another, including home, ambulance, hospital, nursing home, and hospice.
POLST is designed to supplement the living will or advanced directive, which individuals typically use to designate a healthcare proxy who will make decisions when they are no longer competent to direct their own medical care. A committee of the New Jersey Hospital Association is expected to create a POLST form to be used throughout the state by the end of the year.
When there is no clear directive, a state ethics committee can step in to help families and nursing home staff tackle tough questions by bringing "some fresh viewpoints, and people who have been trained to keep the conversation on track and keep it very neutral," said Jane Knapp, chairwoman of the Tri-county Regional Ethics Committee, serving Camden, Burlington, and Gloucester counties.
There are 10 regional ethics committees, some more active than others. Often the panels help mediate discussion on what the nursing home resident would have wanted. "If they have stated to people that they want everything done, that they are afraid to die, then we will advocate in that direction, " Knapp said. "We won't just do what looks easy for the nursing home, or what might be for the greater good of society. We are trying to advocate for that particular resident."
In many cases, as the committee makes inquiries, it finds out that "people don't want to live on a respirator, a ventilator or a feeding tube -- they really don't," Knapp said. "But in those cases that we can determine that the patient would have wanted it, we recommend that they stay the course."
Knapp recalled a case several years ago of a 24-year-old man who suffered a catastrophic fall from a high tree, and was in a skilled nursing facility on full life support. His father wanted to remove life support, but his mother could not do it. Her committee was called in, and listened to family members, the doctors, the nursing home staff and the family priest.
"We provided a time and place for everyone's stories about the case to be told," Knapp said. "What we were trying to do is figure out as best as we could what the young man would have wanted. Not what his father or his mother wanted, but how would he have wanted to live? In the end, his mother was very much at peace with the decision to withdraw life support after the discussion was framed as 'what would my son want?'"
Amy Brown, an attorney with the ombudsman's office, said the work of the ethics committee employs "a methodology that identifies the ethical principles that are generating conflict, and then works through all the factors." The committee comes up with a recommendation, which is not legally binding but is the committee's best assessment of what should be done in that situation. "More often than not [the nursing facility does] follow the recommendations of the ethics committee," said Brown, who estimates that the committees conduct 30 to 40 formal consultations per year, and also field numerous calls seeking guidance.
Brown said the regional ethics committees are a response to the 1985 New Jersey Supreme Court ruling in the case of Claire Conroy, an 84-year-old nursing home resident with severe cognitive impairments and physical complications. She was receiving nutrition and hydration through a feeding tube. She could no longer communicate or express her wishes, and her guardian nephew went to court to have the tube removed, arguing she would not want it. The state's highest court ultimately ruled that life-sustaining medical treatment can be withheld or withdrawn for elderly residents of nursing facilities with severe cognitive and physical impairments who have limited life expectancy.
In the ruling, the high court mandated procedures to guide treatment decisions that focus primarily in determining what the resident would have wanted. Where there is limited or no evidence of the resident's wishes, the treatment could be withheld/withdrawn if the burdens of the treatment outweigh its benefits or if it is inhumane to continue it. Brown said the court directed the ombudsman's office to handle complaints related to these cases. The regional ethics committees were established as an extension of this mandate.
"Each one of these situations is heart-wrenching," said Margaret Nolan, a registered nurse and a nursing home administrator, who chairs the regional ethics committee for Passaic and Morris counties. The committee alleviates the situation "by bringing the interdisciplinary team together, bringing the family together, and having everyone come to the table and find out where the conflict is and how to work through it."
Paul Langevin, president of the Health Care Association of New Jersey, whose members are nursing homes, said ethics committees were more active and accessible in the early 1990s than they are today, and he welcomes efforts by the ombudsman to reinvigorate this network.
"I think the timing could not be better [as the nation] starts to re-examine what it means not only to have a good life but what it means to have a good death," Langevin said. "What kind of things do they want to pursue to get better, and when you cannot get better or recover, what kind of care should you be pursuing? Having an open, transparent conversation about that is the best approach."