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| Regional Ethics Committees provide guidance in difficult end-of-life issues. |
These two committed advocates share their perspectives on the important work these groups do to ensure that residents’ rights are respected at the end of life.
Q: Why are you interested in ethical issues in long-term care?
Margy: I believe very strongly in residents’ rights and in advocating for those who are not able to do so for themselves.
Jane: I saw firsthand how necessary ethics committees are when my family had to make the heart-wrenching decision about removing their loved one from a ventilator. It would have been so helpful if an ethics committee consultation had been recommended to help ease the guilt and misunderstanding surrounding that decision.
Q: How did you become involved in OREC/TREC?
Margy: I got involved when a member invited me to a meeting. I wanted to meet other health care professionals and discuss real issues of concern. I became the Chairman of OREC in 2012.
Jane: Seven years ago, the Membership Chair at that time invited me after learning of my interest in ethics. I served as the Education Chair for four years and as Recording Secretary and Interim Chairman before I took on the position of Chairman in 2010.
Margy: To work collaboratively to protect residents’ rights, especially the right to make health care decisions, and to ensure the ethical integrity of the health care facility, their employees, and other persons providing healthcare.
Jane: The TREC mission is two-fold, to provide bio-ethical case consultations to the long-term care community when all attempts at in-house resolution have failed, and to provide education to the long-term care community.
Q: Describe a consult/advice/outreach your group provided that you felt was important or impactful.
Margy: Our group has participated in many consultations throughout the years. In each case, we provide important advice and support to the family and/or facility in crisis, ensuring that the decision/recommendation conforms to ethical standards and is consistent with relevant law.
Jane: One of the most memorable cases in TREC history involved a 24-year old man who, as a result of an accident, was a resident on a ventilator unit in a skilled nursing facility and was in a permanent vegetative state. The time came when the attending physician, the staff and his father felt it was time to let him go, but his mother just could not, resulting in great conflict not only within the family but among facility staff. Through case consultation, TREC took the time to discover who this young man was and how he would have wanted to live his life. Framed in this perspective, his mother was at peace with the recommendation to withdraw life support, as painful a decision as that was for the family and loved ones.
Q: How does your group benefit facility staff? Families? Residents?
Margy: When particular choices are difficult or controversial or a disagreement about optimal care exists, OREC provides support to professionals, staff, and families who experience difficulty making the best choice for their patient/resident/family member.
Jane: TREC helps facility staff when they are at an impasse with the family, or when there is disagreement on treatment among staff. We create a safe and non-judgmental environment for families to bring all their concerns to the table. Sometimes TREC is the only advocate a resident has if they no longer have capacity and there are no involved family members or a legal guardian. In these situations, we do our best to discover what the resident would have wanted, and if that cannot be determined, we help to guide what is in the resident’s best interest considering all the relevant factors.
Q: What are the biggest ethical issues you are seeing right now in long term care?
Margy: Many residents have no advance care planning documents to reflect what kind of treatment they would/would not want (no living will, no health care power of attorney, no do-not-resuscitate (DNR), do-not-intubate (DNI) or do-not hospitalize (DNH) orders). Serious ethical dilemmas arise when these elderly residents reach the end of their lives and no one knows what they would have wanted.
Jane: One huge problem is the default of the medical system to use every available medical intervention as a matter of course rather than explain other available care options. We also find that there has not been any advance care planning conversation or documents put in place to reflect what the resident wants.
Q: What is your hope for the future of your group? For the future of ethical decision making in long-term care in general?
Margy: My hope for OREC is that we have continued enthusiasm and a growing membership, and that more facilities get involved. With all the expected health care changes, the importance of OREC in supporting ethical issues in LTC will only grow. I want OREC to contribute to the health and well-being of our elderly population.
Jane: My hope is that TREC will continue to grow and have a greater importance in the long-term care community, especially as a resource for education. My wildest dream is that our role in the community would evolve to be to help provide advance health care planning for every long-term care resident so an ethics consultation is never needed! I also hope that every family who is struggling with such painful decisions will be offered the services of a trained and well-prepared ethics committee.
Q: Why should long-term care workers/facilities join RECs?
Margy: As a member of a Regional Ethics Committee, they can attend educational seminars and lectures and communicate with other ethics committees and health care providers. Participation greatly improves knowledge concerning ethical issues.
Jane: Building relationships with other colleagues has been invaluable for our TREC members. For instance, a member who is the sole social worker at his/her building now has a wider network of support and colleagues to offer advice on an internal issue. Often, cases do not need to go to formal consultation because members can offer insights and guidance resulting in an in-house resolution.
I have yet to hear a member say that their TREC membership was not of value or not worth the time. We very much value each member; everyone has something very important to offer, lay person and clinical person alike. I would encourage every long-term care facility to participate in their local regional ethics committee.
If you are interested in joining a Regional Ethics Committee, please contact the Chair of the group in your county: http://nj.gov/ooie/pdf/EthicsCommitteeList.pdf.
You can also contact Amy Brown at 609-826-5126 for more information.
Nice committee
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