In Memoriam: Volunteer Advocate Stanley Fox

OOIE is sorry to announce the passing of long-time volunteer advocate Stanley Fox, 86, on August 21, 2012. Stanley was the Advocate at Maple Glen in Fair Lawn, Bergen County. He attended all of the regional quarterly meetings and was very outgoing and outspoken. Stanley often said he felt lucky to be healthy enough to give back to other seniors who were not so fortunate. Our deepest condolences to Stanley’s friends and family. He will be sorely missed.

Spotlight on New Jersey’s Regional Ethics Committees: Ocean Regional Ethics Committee (OREC) and Tri-Country Regional Ethics Committee (TREC)

Regional Ethics Committees provide guidance in difficult end-of-life issues.

This month, OOIE interviews Jane Knapp (Chair of TREC) and Margy Gosnell (Chair of OREC). Their respective Regional Ethics Committees operate under the auspices of the Ombudsman’s Office and provide guidance and consultation about difficult end-of-life issues in long-term care settings.

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. 

Q: Briefly describe your group’s mission. 
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. 

OOIE Takes Stand on Issues Affecting NJ Seniors

Our office has been busy working on a number of policy and legislative issues to ensure that elderly in New Jersey are receiving quality care.

END-OF-LIFE ISSUES
In our view, advance care planning is an essential residents’ rights issue. What could be more important than to have one’s wishes respected at the end of life? For this reason, the OOIE was actively engaged in activities associated with National Healthcare Decisions Day and we have been working with a statewide group of stakeholders to implement the recently passed Physicians Orders for Life Sustaining Treatment or POLST law.

POLST is another advance planning tool designed for those who wish to further design their preferences for healthcare. POLST is a medical order that doctors or advance practice nurses fill out with patients and is based on the person’s current medical condition and wishes stated verbally or in written advance directives. The POLST document identifies the type of care that individuals want to receive. The goal of POLST is to ensure effective communication between health care practitioners and individuals receiving care so that decisions are sound and based on individuals’ understanding of their conditions, their prognoses, the benefits and burdens of care, and, most importantly, their goals of care.

MANAGED LONG-TERM CARE SUPPORTS AND SERVICES
We are also engaged in statewide stakeholder meetings regarding the state’s Comprehensive Medicaid Waiver. New Jersey is actively pursuing a policy to rebalance the long-term supports and services system (spending equal amounts on both nursing home care and home and community-based care). One aspect of that effort is working with the federal government to shift New Jersey’s Medicaid long-term supports and services to managed care. This basically means that people on Medicaid who are in nursing homes or other long-term care facilities would be enrolled in HMOs and that those HMOs would pay for those long-term care services and supports, not just acute medical care.

In order to ensure a smooth transition to managed care, the state is convening workgroups to develop contract language with HMOs, which are now referred to as Managed Care Organizations or MCOs. Our office is serving on three of the four workgroups – Assessment to Appeals, Access to Services, and Quality Monitoring. We are most particularly concerned with ensuring that:

• individuals can access protective and advocacy services if they are the victims of abuse, neglect, or exploitation;
• the states and MCOs effectively communicate with and educate individuals about their options and their rights;
• the process is transparent for consumers;
• and all those who need and would benefit from holistic care management receive it.

OLDER AMERICAN’S ACT RE-AUTHORIZATION
The Older Americans Act (OAA) is the federal law that governs long-term care ombudsman programs as well as many programs that provide critical services to seniors (such as nutrition services for people in the community). Congress is currently working on amendments to the law, and we have been following the process to ensure that residents in long-term care facilities continue to receive services to enhance their ability to make choices for themselves and to have their rights are protected.

OOIE Volunteer Advocate Program "Springs" Ahead

OOIE STEPS UP SCREENING PROCESS FOR VOLUNTEER ADVOCATE APPLICANTS

The OOIE Volunteer Advocate Program has joined a handful of other states in requiring criminal history background checks, which include a fingerprint screen, for all new volunteers.

“Since our volunteer advocates provide direct resident contact and support, OOIE has implemented criminal background checks as a valuable screening tool for potential volunteers,” said Deirdre Mraw, the OOIE statewide volunteer coordinator. “Criminal background checks help ensure that our volunteers are honest, safe and qualified. This adds another layer of protection as we advocate for this vulnerable population.”

After filling out an initial application and undergoing a preliminary interview with an OOIE regional volunteer coordinator, prospective volunteers are asked to fill out a form consenting to a criminal history background check and are directed to a company that takes fingerprints and submits them to the NJ State Police.

The results will be available from the State Police approximately 7-8 business days from the date of fingerprinting. Once the criminal history background check is completed, the volunteer will begin their formal 32 hours of training.

MORE MONEY FOLLOWS THE PERSON

At the quarterly volunteer advocate meetings in March, trainers from OOIE and the Office of Community Choice Options (DHSS) educated OOIE volunteers about their participation in an important federal initiative called Money Follows the Person (MFP). This MFP program provides enhanced federal money to participating states for every person it transitions from institutional setting to a home/community based setting. This process includes extensive counseling and assessment, a housing search, and assistance to acquire all of the medical and social resources the person needs to make a successful transition.

OOIE volunteers will play an important role in this project - identifying potential candidates for the program. Since the training, OOIE volunteers have identified several nursing facility residents who have expressed an interest in moving to a less restrictive environment. The volunteers work closely with social workers to make sure that these referrals are made and that the residents receive counseling about their options.

PARTNERING WITH AARP NJ

OOIE is partnering with AARP New Jersey to recruit volunteers to achieve its goal of placing one volunteer advocate in each of New Jersey's more than 360 nursing homes. Since the beginning of the year, OOIE has attended several local AARP outreach events to promote OOIE services generally and to specifically tout the Volunteer Advocate Program. OOIE looks forward to future collaboration with AARP New Jersey to raise awareness among the state’s active senior population about this important volunteer opportunity.

CELEBRATE OLDER AMERICAN’S MONTH – VOLUNTEER!

Since it is Older American’s Month, the OOIE urges anyone who is interested in becoming a volunteer advocate to contact the office at 609-826-5053. There are currently about 180 volunteer advocates in the state but at least twice that number are needed in order to have an advocate assigned to every nursing facility. “There is a significant unmet need out there,” said Ombudsman McCracken. “I urge anyone who is interested in making a meaningful contribution to the lives of elderly New Jersey residents to give us a call – today!”

Money Follows the Person and OOIE: Perfect Together

The OOIE has recently joined an effort by the State of New Jersey to move people from nursing homes back into the community. Through the federally-funded Money Follows the Person (MFP) program, the state receives extra money from the federal government if they move people who are living in nursing homes or in state developmental centers into an appropriate community placement. The OOIE has been asked to help spread the word that some seniors living in nursing homes may be eligible to move into the community with the proper supports.

In New Jersey, the Money Follows the Person program is a joint partnership between the NJ Department of Human Services, Division of Developmental Disabilities (DDD) and the NJ Department of Health and Senior Services, Division of Aging and Community Services (DACS). The DDD is focusing primarily on moving people with developmental disabilities from state institutions and DACs and the OOIE are focusing on moving people from nursing homes into homes in the community.

"The trend nationally and here in New Jersey, is to move people from the most restrictive to the least restrictive environment," said Ombudsman James W. McCracken. "The Ombudsman's office is guided, as always, by consumer choice. If someone wishes to leave a nursing home and live in the community, it is essential that they have the services and supports they need to make that successful transition. Our role is to make sure that as many people as possible know that these services and supports are available."

In order to assist in this effort, the OOIE is seeking funds from the federal government to hire staff dedicated solely to educating residents, their families, health care professionals and the public at large about the MFP program.

In the meantime, OOIE volunteer advocates have been briefed on the benefits of MFP and have been provided with flyers from the MFP program. During meetings this spring with the DACS Money Follows the Person nurses, OOIE volunteers were asked to be on the look-out for nursing home residents who have expressed a desire to move back into the community.

"We know that returning home is not a realistic possibility for every single person receiving care in a nursing home. So we do try to manage expectations," said McCracken. "But we also know that there are many people who will benefit from this program but who probably don't know, or whose families are not aware, that living at home with the proper plan of support is a highly viable option."

OOIE volunteers have already made about a dozen referrals to DACS MFP staff, said McCracken.

Continued Education and Outreach on End-of-Life Issues

Bioethicist Dr. Helen Blank leads discussion with participants.

OOIE has continued its commitment to training and educating long-term care workers to deal with difficult ethical conflicts, especially around medical treatment at end of life.

From January through May 2012, OOIE held 7 trainings throughout New Jersey and educated more than 500 long term care professionals. 

The training, How to Make Ethical Decisions at the Bedside, is presented by bioethicist Dr. Helen Blank and teaches participants to identify ethical issues and to work through them in order to avoid crises and family conflict when facing difficult, heart-wrenching situations. These might include questions about withholding or withdrawing life sustaining medical treatment such as feeding tubes and ventilators, implementing do-not-resuscitate (DNR) and do-not-hospitalize (DNH) orders, or involving hospice.

OOIE continues to hold bi-monthly meetings of New Jersey’s Regional Ethics Committees (RECs) – groups of professionals from many disciplines who come together to provide guidance to facilities to deal with the issues mentioned above.

There are 10 such groups currently operating throughout New Jersey, which serve as an important resource to the long-term care community. OOIE provides guidance and support to the RECs and brings these groups together regularly so that they can exchange information, share experiences, and provide feedback on the ethics support and education they give to the provider community.

Click here to view contact list of the Regional Ethics Committees