Jane Knapp helps families and long-term care facilities agree on critical healthcare decisions for loved ones. As Chair of the Tri-County Regional Ethics Committee (TREC) in southwestern New Jersey, Jane has seen her share of care client impasses and resolutions. Is further invasive surgery necessary? Is chemo appropriate? Should a feeding tube or ventilator be discontinued? Should a do-not-resuscitate order be followed?
And there are the occasional out-of-the ordinary cases like an elderly woman who was a former theatrical production dancer. Although this stage performer later struggled with dementia in a nursing home, she still enjoyed practicing her dance kicks. But the care staff feared the spunky senior would injure herself when she got on the floor and started twirling her legs. The staff wanted to restrain their care resident, but the family did not approve. Jane and her consultation team helped negotiate a compromise that allowed the spry senior to practice her routines from a padded mat in her room under watchful observation.
“They needed fresh eyes—they needed someone to say let’s brainstorm this together,” explains Jane, whose husband, Kevin Knapp, owns the Right at Home office in Cherry Hill, N.J. Jane has served alongside Kevin as his in-home care agency’s Director of Marketing, but currently focuses on her work as a commercial airline pilot. When Jane is not flying several days a week, she pilots TREC which oversees more than 300 community volunteers who are under the New Jersey Long-Term Care Ombudsman office. Her team of 25 specially trained case consultants help negotiate solutions for biomedical ethical dilemmas facing residents in long-term care and assisted living facilities in the counties of Burlington, Camden and Gloucester.
Mediation and Ethics Consultation in Long-Term Care and Nursing Home Care
A case consult team of three to five TREC members is called in when a long-term care facility is in a gridlock over care for a resident—typically someone without a clear advance directive and who cannot currently express their own care wishes. The TREC consultation team often includes Jane as the facilitator and volunteers from a number of health disciplines, such as a doctor, nurse, chaplain and social worker.
“Because we work directly under the ombudsman’s office, our point of view comes from the resident,” Jane states. “We act as the ombudsman himself, trying to be the advocate for the resident and protecting the resident’s rights. Oftentimes, the care staff has certain treatment protocols or opinions about what they want to do, but the family is unsure. Or the family is uncomfortable, or they think, Would Mom have wanted this? Is this necessary? Our recommendation will be always on the side of the resident.”
Jane joined TREC in 2005 and worked in several positions before becoming Chair in 2010. The go-getter who earned a pilot’s license at age 21 received extensive training from the state on how to facilitate the biomedical ethical consults. Jane started ethics consultations in 2006. An average TREC consult caseload is about six cases a year, but one year, the tri-county team handled 11 cases. In looking at all options for the loved one in question, each TREC team makes recommendations for the care facility staff and families to follow, but the direction is not legally binding. Jane notes that family members may have guilt about making tough end-of-life decisions, so “we help take a big burden off the family.”
Jane and her team work to “create a safe environment for people to say things that otherwise they may not be able to say,” including things resulting from built-up emotions and past baggage that can lead to family conflicts over how to best care for parents and other relatives.
“Our mission is also to educate the long-term care community,” Jane says. “My dream as Chair would be to put the biomedical ethics part of it totally out of business. The way we do that is by encouraging people to have conversations with their families while their loved one can still communicate. People need to have these conversations a lot earlier than they are having them. It’s such a gift you are giving to those who are left behind.”
Long interested in medicine before she earned a marketing degree in college and then a commercial pilot’s license, Jane is grateful for the relationships she’s built in the community through her ethics committee work.
“For me, it’s very, very satisfying to see people come to a full resolution or at least step toward it,” Jane affirms. “The thing that I encourage most of all is: Don’t let this happen to you. Try not to be the family who needs a consult. Have a family meeting. The best time to talk about all this is when you are not in crisis.”
Even a crisis as perplexing as safely letting Mom relive her cherished career as a theatrical dancer.To help with your own family’s dialogue over caring for an aging loved one, be sure to read the RightConversationsSM guide created by Right at Home.
About the Author
An award-winning journalist who has documented stories in nearly 20 countries, Beth Lueders is an author, writer and speaker who frequently reports on diverse topics, including aging and health issues for both U.S. and international corporations.