Summer 2019

The Care Committee™: A Planning Tool for Clients Without Families

ABOUT THE AUTHOR

STEVEN M. COHEN

Steven M. Cohen, a partner with Pabian & Russell, LLC, leading the elder and disability law group. He has served as a member of the Board of Directors of the Massachusetts Chapter of the National Academy of Elder law Attorneys as well as co-chair of elder law committee of the Boston Bar Association. He is co-author of the Nursing Home Medicaid Eligibility Chapter in Estate Planning for the Aging and Incapacitated Client in Massachusetts published by Massachusetts Continuing Legal Education.

Mr. Cohen speaks regularly before senior and professional groups including the American Bar Association, the Boston Tax Institute, Massachusetts Continuing Legal Education, the Boston Estate Planning Council, Harvard Medical School, as well as to health care professionals in hospitals and nursing homes.  Mr. Cohen has been named a “Massachusetts Super Attorney” by Boston Magazine in the elder law category each year since 2006.

KATE GRANIGAN, MSW, LICSW, CASWCM


Ms. Kate Granigan is a licensed Independent Clinical Social Worker and received her Master’s degree in Social Work from Boston College in 1994. She has worked as a clinician in the field of aging for over 20 years. Ms. Granigan founded C.A.R.E., a Care Management practice, in 1999, and in June 2009 C.A.R.E. merged with Overlook Visiting Nurse Association & Hospice Services, part of the non-profit Masonic Health System.  Ms. Granigan was Vice President of Care Management until 2016 when she left to join LifeCare Advocates as Chief Executive Officer.

As Chief Executive Officer of LifeCare Advocates, Ms. Granigan oversees an Aging Life Care Management practice with a team of Life Care Managers, both nurses and social workers, who provide assistance, advocacy, and guidance to elders and their families.

Ms. Granigan is on the Board of Directors of the Aging Life Care Association and an Advisory Board member for the Massachusetts Guardianship Association.  Ms. Granigan is a former member of the Board of Directors for the Scituate Council on Aging, Massachusetts Guardianship Association, and previously served as Secretary/Treasurer of National Academy of Certified Care Managers (NACCM).  Ms. Granigan is a former member of the Board of Directors and a past President of the New England Chapter of the Aging Life Care Association. In 2015 Ms. Granigan was the recipient of the Aging Life Care Association’s New England Chapter “Member of the Year” award.

Ms. Granigan lectures regularly on topics related to aging, caregiving, and elder care.

Steven M. Cohen, Esq. and Kate Granigan MSW, LICSW, CASWCM

Many elders are aging alone. According to the Administration on Aging, today almost one third (28%) of all elderly individuals live alone. Further, the combination of an increased mobile society, declining marriage rates, and the often-referenced aging baby boomer generation means that we will see an even greater number of elders living alone in the next 25 years. These clients do not have the network of family, friends, or personal connections that many of us take for granted. This begs the question, who will make decisions on their behalf?

An Elder Law and Aging Life Care Management practice in Greater Boston has created a model of supportive decision making, called a Care Committee, as an alternative to the traditional models of substitute decision making.

The Traditional Model and Its Limitations

As has been discussed in other articles in this issue, the most familiar model for a client to retain control over medical decisions is to execute a health care proxy appointing an agent and successor agent to act as a substitute decision maker in the event the client is incapacitated. In this model, the proxy should also include a medical directive describing the client’s wishes in broad strokes regarding what kind of treatment they would or would not want if she is unable to participate in making medical decisions on her own behalf. Every state has an advanced directive statute regarding health care proxies. Many clients also create living wills that describe in greater detail their wishes regarding end-of-life decisions.

Although this traditional model can work well for many clients, there can be situations where the model does not meet the client’s needs. For example, this model will not work for clients who have no family members or close friends to serve as their health care agent. It will also not work for clients with family or friends who are too distant, either geographically or emotionally, to serve.

There are a variety of reasons why family and friends may not be willing to serve as substitute decision makers. They may be reluctant because the tasks associated seem too complicated or overwhelming. Or, they may be over-extended due to taking care of an ill parent while also balancing work and children. Under all of these circumstances the traditional model will not be an effective way to manage a client’s care.

Similarly, professionals such as social workers, Aging Life Care Managers (ALCM), and attorneys are often reluctant to serve as health care agents for a variety of reasons. These professionals may be concerned about not knowing the client well enough to be making decisions, or can be concerned about conflicts of interest, time issues, or cost to the client.

The traditional model may not be effective when a client can identify a willing and able health care agent but does not have a successor agent. The initial health care agent may not want to continue serving if the responsibilities become too difficult or time consuming. This is often the case for clients with intermittent capacity because it is particularly challenging to serve as an agent for an individual who, over the years, repeatedly experiences bouts of temporary incapacity caused by mental illness or substance abuse. If for this, or any other reason, the appointed agent is no longer willing or able to serve, there will no mechanism for identifying another agent or taking steps to have the court appoint a guardian. Such lack of continuity can be extremely disruptive and detrimental to a client’s care.

The traditional model may also not work in situations where there is family conflict. Certain family situations give rise to more disagreement over care decisions. For example, there may be tension in a second marriage between a spouse and adult children from the first marriage. Gay and lesbian couples may have tensions arising between the health partner and the parents of the incapacitated partner. In these cases, there are too many competing individuals involved in the client’s care. Such conflict unnecessarily complicates important choices about the client’s care.

A potential shortcoming of the traditional model is that it may not provide adequate monitoring of the client’s care or oversight of the decision maker. No one looks over the shoulder of a health care agency to ensure that they are doing a good job. Monitoring and oversight is particularly important to prevent a health care proxy from taking a passive approach or getting involved only when a question or issue is presented. Court-appointed guardians in many states have a statutory obligation to file accountings with the court detailing how they have spent the incapacitated person’s money and medical reports outlining a care plan. However, in many states, there is no equivalent obligation that enables the court to monitor a health care agent’s decisions.

Finally, some client’s care is so complex that it requires delegation beyond that provided by the traditional model. A health care agent may take on too much and make uninformed decisions that would be better suited to a professional. On the other hand, if decisions are being made by a professional such as a Guardian, lawyer or Aging Life Care Manager, they may charge the client for tasks that they should be delegating to a less expensive professional. Most importantly, professional trustees and Guardians strive to earn a robust return on investments for their clients, but may not be skilled or interested in how best to spend money to ensure their client receives proper care, maximizes independence, and improves quality of life.

The Potential Solution: The Care Committee™

Steve Cohen (Elder Law Attorney) and Emily Saltz (Aging Life Care Manager) developed this model by happenstance. In working together, they were seeing more and more cases where the client was never married, had no children, and was not connected to the next closest family members. The concept of The Care Committee™ evolved from these real-life examples of the confusion and lack of clarity for the client about who should be appointed as decision maker.

The Care Committee™ is an alternative approach that includes assigning a health care agent, but also creates a support system for the agent and allows for both professional and personal perspectives. The concept of The Care Committee™ is based on a team approach to assist clients and includes their appointed agents. The Care Committee™ is not an alternative to the health care proxy, which is a critical relationship to establish.

The Care Committee™ can assist a client in several ways. The client has input from different perspectives, which allows the client the opportunity to consider options and information from a variety of sources and expertise. The client is directing the team as long as able, and the information shared with the members allows for a clear message and directive around preferences, goals, and choices.  Opinions are heard simultaneously, thus avoiding the problems of the client not correctly remembering what was said. The client is also able to test whether her “team” can work well together. If not, the client has the opportunity to make adjustments. Working with the client benefits the Committee members because they get to know the client, thus avoiding the challenge of trying to make decisions on behalf of an incapacitated person they don’t really know.

Who should be on the Committee?

Many people have negative reactions to the word “committee.” They may believe committees are unnecessary, time-consuming, or ineffective. Many individuals hesitate to accept a position on a committee for the same reasons. Accordingly, the success of The Care Committee™ depends largely on selection of the right individuals as members. Ideal members are available to the individual as requested, in some cases simply a passive resource while they are well, and more actively involved as needed due to decline or eventual incapacity. They must also be responsible and accountable for seeing actions through. In addition, because any one individual likely will not have the varied skill set required to manage a client’s care, it is important to have Care Committee members with diverse skills, each of whom contributes something valuable to the Committee.

The Aging Life Care Manager is a key component to The Care Committee™. The Care Committee™ is not a substitute for a health care proxy, but rather The Care Committee™ works along with the proxy and includes an Aging Life Care Manager. Typically, The Care Committee™ members will include the client, the health care agent, durable Power of Attorney or Trustee, an ALCM, friends, and family members. The Care Committee™ is intended to share the responsibilities typically shouldered by the client or by her agent. The Care Committee™ is put in place to advise the agent in making decisions, monitoring the agent’s actions and, finally, holding the agent accountable.

Many clients already have an informal Care Committee in place that can be formalized. For example, a client who lives in New York City and has a daughter in California and a niece in Connecticut. The daughter hires an ALCM to oversee her mother’s care and the niece checks on her aunt on weekends. Although it is not officially named as such, The Care Committee™ already exists for this client. By naming this network of supports as a Care Committee everyone is better able to recognize its importance and how it should function on behalf of the client.

In creating The Care Committee™, the client signs a written document drafted by the attorney. This Care Committee Agreement typically exists as a separate document (along with a durable power of attorney, health care proxy, will, and perhaps a trust) as part of the client’s estate plan. The client’s signature should be notarized, and the Committee members should sign an assent form signifying that they accept their appointment (see sample agreement).

The Care Committee™ document should address the following: defining membership, requiring a minimum number of regularly scheduled meetings, and designating who has the power to appoint and remove members. The document should explain how decisions are made when there are disagreements, definite the Committee’s responsibilities, clarify when the Committee ends, and explain the liability and compensation of the Committee members. Finally, the document should reference the client’s wishes regarding level of care.

It should be noted that The Care Committee™ Agreement is not a legally binding instrument. It does not carry the same weight as a durable power of attorney or health care proxy. For example, although The Care Committee™ is intended to advise and assist a health care agent, the Committee’s decisions are not binding on the agent. In the event of a serious disagreement between The Care Committee™ and the health care agent, the Committee would have to bring the matter to the attention of a court to legally challenge the health care agent’s actions.

When? – Prior to Incapacity

Preferably, The Care Committee™ begins to function while the client is able to participate in Committee discussions in a meaningful way. Healthy clients may sign The Care Committee™ document but delay the Committee’s effective date. It may make sense for the client to establish a relationship with an Aging Life Care Manager and have all members of The Care Committee™ meet once to exchange contact information. However, as with other estate planning instruments, even if the client does not presently need assistance, she should first ask the potential Committee members if they would be willing to serve and share the draft document with the proposed members so they can decide if they want to participate. However, if this is not possible, The Care Committee™ can be created by a health care agent subsequent to the client becoming incapacitated.

Ideally the client leads The Care Committee™ as long as he or she is able to meaningfully participate in the decision-making process. In the event of the client’s incapacity, the Health Care Proxy leads the Committee regarding all aspects of care.

The Care Committee™ and High Conflict Family Situations

The Care Committee™ is by no means a guaranteed means of resolving conflict over health care decisions. For example, with a second marriage and adult children from a prior marriage, there may be unstated assumptions regarding what would happen if the client becomes incapacitated. The Committee provides a setting for the client to discuss these issues with her family. An Aging Life Care Manager can be key in facilitating and moderating this conversation. The Committee gives the client the opportunity to be heard and to clarify her wishes regarding health care. In addition to signing The Care Committee™ Agreement, it can be helpful to have the family create a “family contract” where everyone signs a written agreement that formalizes what has been discussed. Addressing these issues in the Committee setting may lessen the possibility of future misunderstandings or disagreements. It is important to keep in mind that with some families, agreement is not possible and that having one appointed decision maker may be preferable to involving family in a Care Committee.

Other Applications for The Care Committee™

Although The Care Committee™ evolved out of a demonstrated need for clients who lacked appropriate people to assign as their agent, it is clear there could be many other applications of this concept. For example, it could be used with an elder who is the guardian for their disabled child. The Care Committee™ could be a resource for a successor guardian, making that role far less daunting for a healthy adult sibling to take on. Or consider the couple in their 70s who have no children. This could be a way to begin the conversation with them about how they will handle decision making in the future. Lastly, it is a new method for insulating clients from self-neglect or third-party predators. The Care Committee™ concept is specific, yet broad enough to be adapted to meet the needs of many different populations.

Aging Life Care Manager Role

The Care Committee™, conceptualized by Saltz and Cohen, and expanded and formalized with Cohen and Granigan, current CEO of LifeCare Advocates, presents intriguing possibilities for ways Aging Life Care Managers can be involved in a client’s decision making.

First, becoming a member of a client’s Care Committee allows the ALCM to contribute to the process of decision making without acting as the actual decision maker or agent. As has been discussed earlier in this article as well as others in this issue, this eliminates many of the concerns ALCMs may have about conflicts of interest, self-payment and other ethical issues. Yet, this arrangement allows the client to benefit from the Aging Life Care Manager’s knowledge, experience, and personal relationship.

Second, if the Aging Life Care Manager is considering taking on a decision-making role for a client, using a model like The Care Committee™ is one way for the ALCM to feel more confident and supported in making decisions. For example, if the ALCM is the health care agent or guardian, they are not making decisions about the client’s health by them self. Rather, discussing all options and information with the other members of the Committee, all of whom must work together to decide on the right course of action for the client. While this arrangement does not eliminate all the concerns for an ALCM in taking on a decision-making role, it certainly could allow one to feel considerably more comfortable in taking on this role.

Either way, whether the Aging Life Care Manager is a member of the Committee or the agent for the client, having an ALCM on a Care Committee can significantly contribute to the Committee’s success. The ALCM can help to provide information about care options and resources, help to understand medical diagnosis or information, help other members of the Committee understand the client’s wishes and to help facilitate and moderate difficult or contentious conversations. This role supports what Aging Life Care Managers do best — articulating what a person wants in a detailed way and taking the guesswork out of understanding a client’s wishes.

Conclusion

The concept of The Care Committee™ goes a long way in addressing many of the concerns related to the traditional model of substitute decision making for a client. The Care Committee™ encourages the inclusion of appropriate professionals to give information so health care agents are not making decisions without accurate information and guidance. In an ideal situation, the Committee sets up a team of people who can be involved with the client for some time and will be knowledgeable about their wishes should incapacity occur in the future. The Care Committee™ formalizes what many clients already have in place informally and gives structure to decision making and processes for decision making that would otherwise not exist.

As a result, The Care Committee™ may help to overcome the reluctance of family members, friends, attorneys, social workers, and even Aging Life Care Managers to step forward and accept a decision-making role for their clients.

The Committee is intended to share the responsibilities typically shouldered alone by the client or by her appointed agent. The creation of a Care Committee also addresses the concern about accountability for health care agents and powers of attorney. In addition to sharing tasks, The Care Committee™ should also advise the agent in making decisions, monitor the agent’s actions, and, finally, hold the agent accountable.

Most importantly, The Care Committee™ is one tool that can address what elders want most: choice and control. The Committee is intended to be led by the client whenever possible, allowing him to freely and clearly express his desires for care and end of life, thus empowering him to take control of his future.

References
Cohen, Steven (2014). “The Care Committee™: A Planning Tool for Clients Without Families,” The Elder Law Report, Volume XXVI, Number 5, page 1.


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