Key Components of a Workshop
A Workshop involves a panel of attorneys, with one attorney serving as the moderator, as well as a health care/clinical component. All Workshops must have attorney presenters covering legal topics related to ERISA and labor/ employment. These two topic areas are the essential, required components of a Workshop. The panel should also consist of one or two more optional legal topics which can be decided by the planning committee based on the targeted audience and/or legal needs of the local community. Below are brief overviews of the required and optional legal Workshop topics. The list of optional topics is not exhaustive but topics must be applicable to patients dealing with a catastrophic illness.
Sample program slides can be found by accessing the Program Materials link on the right navigation bar of this page.
- Panel of 3 to 5 attorneys
To have a cohesive, comprehensive and seamless presentation, the people putting together a breast cancer panel should always attempt to have one person with a general understanding of the global concerns that confront a breast cancer patient. This person will not only act as the moderator and move things along, s/he will introduce speakers and topics, interject questions when clarification seems necessary, and summarize when appropriate. This will mean that the ideal person, based on work experience, education and/or past participation in breast cancer presentations, will have some familiarity with the employment, medical and/or insurance issues implicated in representing breast cancer patients and also should be able to point out other potentially relevant areas of law which may not be covered by the panel (such as credit, housing, child custody and wills and probate). However, a skillful moderator need not necessarily have extensive substantive expertise. It is important that the moderator not make breast cancer representation seem so overwhelming in scope that the audience is discouraged from getting involved. For example, the moderator should point out that the Task Force and other organizations, such as the Cancer Legal Resources Center, can help identify others in the community who have more specialized legal expertise, and who may be willing to help, when necessary.
- Case Study
The moderator will present a case study involving a breast cancer patient and common legal issues. The panelists will address the issues raised in the case study during their presentations. The case study should be tailored to the panel topics being presented at the Workshop. A sample case study can be found by accessing the Program Materials link on the right navigation bar of this page.
ABA Breast Cancer Legal Advocacy Guide
The ABABreast Cancer Legal Advocacy Guide is intended to provide attorneys with an overview of the legal issues a breast cancer patient most likely will encounter, and to enable attorneys to gain an understanding of how to offer assistance. The Guide is a great resource for attorneys interested in becoming an advocate. All Workshops should incorporate the Guide and distribute the Guide to all Workshop participants. The planning committee should also provide the Guide to the attorneys on the panel prior to the Workshop to supply them with background on the training and additional resources for their presentation. The Guide is not meant to be an exhaustive legal source for attorneys. Although the Guide is updated periodically, an attorney utilizing the Guide should verify the current status of the law and any applicable state and local law in their jurisdiction. A link to the Breast Cancer Legal Advocacy Guide can be found on the right navigation bar of this page.
Required Panel Topics
The following sections briefly describe some of the issues that should be addressed by the panelist addressing these topics. Many of the panel topics described below are discussed in greater detail in the Guide.
Most patients diagnosed with breast cancer will have some type of health insurance. The first thing to do is determine the source of the patient’s insurance coverage because that will ultimately determine what the governing law is and what the patient’s rights and responsibilities are. Those who work for private sector employers will likely have insurance through an employee health benefit plan covered by a federal law called the Employee Retirement Income Security Act of 1974 or “ERISA.” If the patient is a government employee, coverage will likely be under a health plan sponsored by the government entity and typically the rules will be enforceable through state or local law. Sometimes a patient will have insurance coverage through an individually purchased insurance policy, not through an employer. In that case, the state insurance commissioner regulates and enforces the terms of coverage.
If the patient is covered through an ERISA health plan, obtain a copy of the description of plan benefits and rules (called the “summary plan description” or SPD). ERISA requires that companies provide this document (and any subsequent updates) to individuals when they first are eligible for insurance coverage and any time the coverage is changed in any significant way. As a practical matter, many employers offer employees the right to change coverage annually, so your client may already have the most recent description of benefits. If not, contact the plan administrator in writing and request a copy of the latest documents. Under ERISA, your client has a right to make this request annually. If you have any trouble getting the SPD, contact the nearest U.S. Department of Labor office for assistance.
Some employers with ERISA health plans provide benefits by contracting with an insurance company or managed care plan and that entity agrees to be financially and legally responsible to provide benefits to the employer’s employees and their families. This is called an “insured” arrangement or plan. These plans must comply with all state and federal rules. However, many employers (particularly larger ones) hire an insurance company or managed care plan only to process and pay claims, but ultimately retain responsibility to fund the claims themselves. These plans are called “self-insured” plans and are not generally subject to state laws. Sometimes it is difficult to tell what type of a plan is providing health care coverage. If the patient has any trouble accessing the benefits that are described in the SPD, consult an attorney with expertise in ERISA.
Regardless of whether the ERISA health plan is insured or self-insured, there are certain ERISA rules that a health plan must follow. The key to success in assuring the cancer patient has access to all the benefits and services s/he is entitled to under the plan is finding an ERISA lawyer who is familiar with these rules, including the very detailed procedures and time frames for deciding initial claims for benefits and appeals of any claims that are denied, requirements that health plans provide for breast reconstructive procedures after a mastectomy, prohibitions against discrimination based on health-related factors or genetic information, and rules allowing certain categories of participants who lose their health coverage to continue them at cost.
- Labor & Employment (covering state and federal laws)
Cancer patients face a variety of issues as job applicants or employees. Applicants need to know when they must reveal information about their medical condition, what health-related questions a prospective employer may ask, and when a prospective employer may ask an applicant to take a physical exam. Employees must know what rights they have to paid or unpaid leave, when and for how long an employer must hold a job open for an employee on medical leave and under what circumstances an employer must allow time off for medical treatment, including the circumstances under which intermittent treatment is available. Applicants and employees need to know how to determine if an employer is taking an adverse action because of a medical condition and, if so, whether that employer action is illegal under state and federal anti-discrimination laws. Because state law is sometimes more favorable than federal law on some of these issues, it is helpful to have a panelist who can address the differences between state and federal employment law in the jurisdiction where the Workshop is taking place.
Optional Panel Topics
- Insurance Litigation
If a cancer patient's medical treatment is not covered or is denied, the patient may have remedies against his/her health plan or insurer. Depending on the type of coverage, the patient's health plan may be covered by ERISA, the HIPAA portability rules (for example, pre-existing condition exclusion or nondiscrimination rules), or state insurance law. It is important for the patient to know whether s/he has individual or group coverage and whether coverage is provided under an employer plan (and whether it is a private or governmental employer). The plan document or summary plan description will describe specific claims procedures that must be followed before litigation can be brought. If the patient does not follow these procedures precisely and within the deadlines set out in the policy or plan, he/she may be precluded from bringing a claim later (so it is important to note this information up front, right after the initial claim has been denied). These documents also may specify the time in which a lawsuit must be initiated and the jurisdiction. In addition to having a panelist who is generally familiar with ERISA and who could describe a patient's rights regarding document requests and filing claims and appeals under a health plan, it would be helpful to have a litigation attorney on the panel who can discuss litigation strategies and the process of filing a lawsuit.
- Surrogate Decision Making
There likely will be times when cancer patients are unable to make decisions about their health care, for example, when they lack the capacity (are incapable)--, either physically, mentally, or emotionally--to make decisions on treatment or end of life planning. At those times, other persons will need to step in and assist patients in making decisions or they may have to make the decisions for them. Such persons are called surrogate decision-makers.
Cancer patients should anticipate that there may be times when they will need a surrogate to assist them with or make decisions for them and should accordingly identify the person or persons whom their health care providers can turn to for decision-making. The best way of doing this is for the patients to complete a Health Care Directive (“Directive”), which is available in many states, or appoint a health care representative. The patients should bring the legal document with them to the hospital and/or clinic where they are being treated so that there is certainty as to whom health care providers must turn for decision-making. Another option for patients is to execute a Durable Power of Attorney for Health Care, which allows the designated person to make health care decisions for a patient, when s/he is incapable of making them. Neither the Directive nor Durable Power of Attorney usually requires court involvement.
If patients have not executed a legal document appointing a surrogate decision-maker, generally health care providers will turn to a close family member to make decisions for a patient. Persons a provider may turn to include spouses, parents, and/or children. Or, in some situations, siblings or close friends may be called upon to be surrogate decision-makers. Essentially, in these situations, the surrogates are chosen by “default.” There needs to be confirmation, however, that state laws will allow family members and friends to be surrogate decision-makers without signed patient authorizations. Also, some states may set forth a hierarchy of who to go to first for decisions while other states treat all family members equally.
Finally, in some situations, court assistance may be needed to identify a surrogate decision-maker. The situation could be one in which there is no written documents assigning a surrogate, no family member available, or there is conflict among family members. Court appointed surrogate decision-makers include conservators and guardians. Notwithstanding how appointed, whether by patients, default, or the court, the surrogate decision-makers are obligated to follow the express wishes of the patients and to act in the patients’ best interests.
State laws likely vary as to the status and process of determining surrogate decision-making. This is a very important subject for cancer patients, however, so it would be important to have a panel member discuss the legal authority and practice regarding surrogate decision-making in the jurisdiction where the Workshop is held.
- Medicare & Medicaid Appeal
If a cancer patient has Medicare or Medicaid insurance coverage, it is important to be aware of the timelines and requirements for the appeals process under these programs. Medicare is federal health insurance that covers most people over age 65 and individuals with disabilities. Medicare consists of Part A and Part B coverage. Part A provides insurance coverage for hospital inpatient services, skilled nursing facility, hospice and home health services. Part B provides insurance coverage for outpatient services such as physician services, hospital outpatient services and medically related items (e.g., durable medical equipment). Medicaid is a federal/state entitlement program that pays for medical assistance for certain individuals and families with low incomes and resources. Additionally, a cancer patient may be eligible for participation in the Breast and Cervical Cancer Prevention and Treatment Act of 2000 program. This program gives states enhanced matching funds to provide Medicaid coverage to a group of individuals above the Medicaid eligibility threshold (the program has age and income requirements). Not all states participate in this program and not all health care facilities within a state qualify for the program. Thus, it is important to check to see if the program is offered in your state and review the state specific requirements.
- State Insurance Department Oversight and Complaint Process
If a cancer patient is covered by health insurance (whether under an individual or group/employer policy), s/he may have additional rights, depending on the state. States have different mandates regarding what types of treatments must be covered under insurance policies and may have an external review or complaint process if a patient's claims are denied. The patient’s insurance policy should describe how to initiate the complaint or external review process, and the patient also can contact the state insurance department directly with questions. Patients can contact their state senator or representative as well, who sometimes can act as a liaison to the state insurance department.
It is important for the patient to know what type of health coverage she has – if the coverage is through an employer, it may be self-funded (not insured) and would not be subject to state insurance law or state insurance department oversight. The plan document or summary plan description should state whether coverage is insured or self-funded. The state department of insurance may have the authority to penalize insurers so it is important for patients to be aware of the complaint process in their state and any remedies and/or assistance available through the state department of insurance.
- Clinical Trials and Experimental Treatment
Cancer patients may face legal issues related to clinical trials or access to experimental treatment. Patients may have questions about the informed consent they are required to sign prior to entering into a clinical trial or about the clinical trial process in general. The informed consent can be overwhelming and a panelist who has experience in this area can explain the informed consent process, including the requirements of proper consent according to the Common Rule and FDA regulations. The panelist can also describe the differences in the various phases of clinical trials. Patients may also seek legal advice on being denied access to clinical trials or experimental treatment. Reimbursement for experimental treatment generally falls under the purview of the ERISA expert but several cases have surfaced in federal courts in recent years relating to access to experimental treatment which a panelist knowledgeable in this area could discuss.
- Estate Planning
Regardless of their wealth, all people should have a basic estate plan. All individuals should have a will, a durable power of attorney for financial affairs, a durable medical power of attorney and a living will – a brief description of each follows.
A will is a document in which you decide to whom you wish to leave your property at the time of your death. In the will you decide who you wish to be your personal representative, sometimes called an administrator or an executor. This is the person who handles your affairs at the time of your death, ensures that your estate is probated, and distributes your assets according to the terms of the will. Whether you wish to leave your assets to a spouse, to your children, to other individuals or to charity, the will gives directions as to what you want done with your assets. In some states where probate is a more complex and expensive process than in other states, a revocable living trust is used in place of a will. But, even where the revocable living trust sets out how you wish your assets distributed after your death, a will must still be created to ensure that any assets not owned by the revocable living trust are distributed to the revocable living trust for final distribution to your chosen beneficiaries.
Wills can be simple or complex. They may contain trusts to manage assets for individuals you wish to benefit or they can direct distribution of your assets outright to whomever you choose. If you wish to give assets to minor children, or individuals with disabilities, those assets should be placed into a trust. In a will you can name an individual whom you wish to be named guardian of your minor children at the time of your death.
- Durable Power of Attorney
A durable power of attorney for financial affairs is a document in which you name an individual, or more than one person, to act as your agent. You may also designate an alternate individual to make business and financial decisions for you. An agent is a person designated by you to be able to handle your financial and business affairs in your absence. By making the power of attorney durable, you have ensured that your agent can act on your behalf even if you lose the mental capacity to direct your own financial and business affairs. Some states have a statutory form for durable powers of attorney for financial affairs, while others do not.
- Durable Medical Power of Attorney
A durable medical power of attorney is a document in which you appoint another individual to have the authority to make medical decisions for you in the event you are unable to make such decisions for yourself because you have lost mental capacity. This person may be any adult that you designate, and you may also designate an alternate individual to make your medical decisions. Because of federal privacy laws, you should ensure that your medical durable power of attorney contains “HIPAA” release authority language. “HIPAA” is the Health Insurance Portability and Accountability Act of 1996, and is sometimes referred to as the medical privacy act. Its purpose is to ensure that no unauthorized person is allowed access to your private medical, mental health and dental records. Because of this law, a medical, dental or mental health professional needs your permission to discuss your medical, dental and mental health issues with another person. The durable medical power of attorney can provide this permission to your agent if it contains HIPAA release language.
- Living Will
A living will is a document in which you provide direction to your medical care providers concerning what type of medical treatment you do or do not wish to be provided to you in the event you are terminally ill or in a persistent vegetative state. A terminal condition is one in which the medical professionals can no longer improve your health or cure you and which is likely to result in your death in the near future. A persistent vegetative state is a medical condition where you are in a coma-like condition from which medical professionals have determined you will not recover, and where you do not have conscious brain activity (WARNING: This is not a medical definition. Consult your doctor to discuss persistent vegetative state and terminal conditions in more detail.) Under these two situations you can direct in a living will whether or not you wish to be provided life sustaining treatment, that is, medical care intended to prolong your life somewhat, but which will not cure you or improve your medical condition, and whether or not you wish to be provided nutrition and hydration under these circumstances. Regardless of your decisions on these matters, you will still be provided whatever medical care and medications are necessary to make you as comfortable as possible and to alleviate pain. Some states have a specific, legally required form for a living will. Some states have a suggested form and still other states have no specific form at all. Discuss your living will with your medical care provider and attorney for further guidance. It is important to review your state law because it may contain other circumstances in which a living will applies and may define “terminal illness or condition.”
Each of these documents can be prepared by your attorney, consistent with your directions and wishes. Your state or local bar association can provide you with the names of attorneys in your area who draft such documents. However, the bar associations cannot provide legal advice to you.
- Genetic Testing
To understand the clinical and legal implications of taking a breast cancer-related genetic test, individuals should seek the advice of both a health care professional and an attorney. There are numerous genetic tests available to breast cancer patients and their family members. Genetic tests can help reveal whether individuals face a higher risk of developing breast cancer before any symptoms appear, or whether they carry particular genetic markers for hereditary cancer that could be present in other family members. Tests may also help individuals determine whether certain prevention or treatment options will be effective. Genetic counselors and physicians can help explain the clinical limits and benefits of such tests. In addition to understanding the clinical aspects, individuals need to be informed about the legal protections against the misuse of information derived from genetic tests. Currently, a patchwork of state laws and a new federal law, the Genetic Information Nondiscrimination Act of 2008 (“GINA”), prohibit genetic discrimination in employment and health insurance. Individuals need to know what actions are prohibited and what kinds of employers and health insurers must follow these laws. In addition, individuals need to know how they can enforce these laws and seek remedies if they are subject to genetic discrimination. It is helpful to have a panelist who can address the scope of protection and remedies afforded by GINA and any applicable state law in the jurisdiction where the training is taking place.
- Family Law (COBRA issues, support issues)
Cancer patients in family law courts face many issues about their personal care and that of their children. It is highly likely in most divorces and all custody battles that the parties’ medical conditions will be at issue. When the health of litigants is an issue, litigants should carefully consider insurance coverage available through private plans, COBRA, and/or federal programs, like Medicaid, SSI and SSDI. How these patients will be able to acquire insured and uninsured treatment for their care is a critical consideration. Knowledge of HIPAA regulations is important for acquiring medical records and bills that may be at issue in any divorce to prove or disprove any claims or defenses. A cancer patient’s need for spousal support may well be influenced or fully supported by his/her medical needs. Some courts may make property distributions in lieu of alimony. Understanding how the ownership of property post divorce may affect insurance benefit availability and estate planning is an important long term consideration when it is known a party is suffering from a life threatening illness. The extent that Courts may consider the health of the parties when making a property determination fluctuates by state and prudent counsel should always be mindful of this consideration. As to custody, the courts will consider the health of the parties and their respective ability to care for the children.
The parties and their counsel should carefully investigate and consider these matters when proposing settlements, making proposed findings to the court, and examining the best interests of the children.
- Healthcare/Clinical Component/Keynote Speaker
The healthcare/clinical speaker is an integral part of a Workshop and often provides the Keynote presentation. The healthcare speaker sheds light on the clinical side of what patients are facing, enlightens participants on what patients go through and may also be able to share experiences he or she has seen first-hand related to legal issues patients commonly face.
There are numerous options for the keynote speaker and your choice will likely depend on the location of your Workshop, access to medical specialists, and availability of potential speakers. Generally, the keynote speaker is a medical oncologist who specializes in breast cancer and it is ideal if you can secure a physician involved in breast cancer research or otherwise on the cutting edge of science with access to new developments in the field. Obviously, depending on your location, it may not be possible to obtain a keynote speaker satisfying this criterion. In that case, there are other options to consider, for instance having: (1) a panel discussion with several physicians who are all involved with breast cancer in some capacity (e.g., a radiation oncologist, surgeon, medical oncologist, psychologist); (2) a round table discussion with a physician and other health care professionals involved in the treatment of breast cancer patients (e.g., oncology nurses, nurse practitioners, or social workers); (3) a representative from an insurance company or the insurance industry that can discuss issues facing patients; or (4) a public figure who is well known in the community and has a personal experience with cancer or who is a cancer advocate.
Usually the keynote speaker’s presentation is at lunch and is the finale to a three-hour Workshop; however, the key note speaker can also be the kick-off to the Workshop by being the first event on the agenda or can coincide with a breakfast. You should check with your state continuing legal education commission because some states will award CLE credit for the keynote speaker presentation even if it is during lunch or breakfast.
The healthcare keynote speaker can be a positive factor in marketing the Workshop and attracting participants to attend because the Workshop is different than your usual CLE. It is a topic virtually everyone can identify with and people are interested in learning more about it. We feel this component is vital to our Workshops and makes them unique.
Another option to bring attention to a Workshop is to invite someone who is well-known throughout your community to provide opening remarks. At the Indianapolis Workshop in 2007, two state legislators involved in health care issues gave opening remarks. During a 2009 Workshop in Louisville, the Secretary, Cabinet for Health and Family Services spoke during the luncheon. Other ideas for invitees include news anchors, community leaders, well-known cancer advocates, judges, or other public figures.