National Alliance on Mental Illness
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CONFIDENTIALITY: Can what they don't know hurt you?
By: Brad Peters
Reprinted with permission from Anchor Magazine, Winter 2009
It was supposed to be one of the best times in Chuck Mahoney's life. At the age of 18, the handsome quarterback started his college education, was in a stable relationship with his long-time girlfriend, and was in a great position to live a life full of promise and potential.
Sadly, in the case of Chuck Mahoney, that potential was denied. The promise of that young life was cut short—by Mahoney's own hand. In the summer of 2000, the young man's mental health began to unravel. His commitment to football, the sport he loved, began to waver. He was reported to be "panicky and depressed" during season preparation camp that year. He ended his relationship with his high-school sweetheart. Over the next two years he received counseling and medical treatment for his rapidly worsening depression. Then Mahoney ended his life.
It's common for teenagers to start college. Unfortunately, the specter of suicide and its devastating affects on individuals and families is also common.
So why is the name of Chuck Mahoney so well known throughout North America? In their grief, Mahoney's parents contacted their son's school demanding answers. Why weren't they notified? Why, when the warning signs were screaming that young Chuck was floundering, didn't anyone from the school take the time to inform the parents of their son's dire need for help?
No answers—or at least answers the family deemed satisfactory— were forthcoming, so the family felt they had no choice but to sue Allegheny College, Meadville, Pennsylvania. The college's continued reply? Privacy. Mahoney was an adult, so the college could not breach their client/student's confidentiality by notifying an outside, third-party source of his difficulty.
Sadly, the family's grief became a matter of public record. And, equally sad, the Mahoney family isn't alone in dealing with these types of confidentiality conflicts.
We live in an era where privacy and confidentiality are touted above all else—and not just in mental health issues. In Canada and the United States, even citizens who want innocuous facts about the workings of their local, provincial or state, and federal governments, are forced to work through the arduous process of Freedom of Information Acts. The information is neither free, nor easy to access.
And it's not just limited to the inner workings of governments. With increased frequency, the media reports instances of breakdowns in the privacy process—sensitive information that has fallen into the wrong hands. Some would argue that any time personal information is viewed or shared with anyone beyond the originally intended audience, it is in the wrong hands.
Not all of the emphasis on maintaining confidentiality is negative. It's understandable to value a person's health information—both physical and mental—by protecting it. The search for better health can be a struggle. The documentation of that struggle is, by nature, intensely personal.
Of course that information should be protected! However, parents like the Mahoneys argue that protection must be balanced with common sense. During the court proceedings, Denny Phillips, a lawyer speaking on behalf of the family said about Chuck Mahoney: "Our contention is, and it's a matter of public record, that the counselors and/or the doctors should have contacted his parents and put him on a leave of absence from the college, or had him involuntarily hospitalized. The essence of this case is that, when the final crisis arose, responsible people did not take action to protect him."
In the United States, legislation has been enacted to address this type of situation. Disclosure of medical records at universities is governed by a 1974 law called the Family Educational Rights and Privacy Act (FERPA), which prohibits colleges from releasing information about a student without that student's permission. During the Mahoney lawsuit trial, the college's defense team presented this act as part of its explanation for why Chuck's parents were not informed of his deteriorating mental health. FERPA was drafted primarily to cover the confidentiality and privacy of student records. The act permits schools to disclose information— without the student's consent—in special circumstances, including compliance with a judicial order or subpoena, legitimate educational inquiries, and "to appropriate officials in cases of health and safety emergencies."
The obvious question for the Mahoneys was: Didn't their son's condition meet the requirements of that last circumstance? It's important to note, however, that FERPA clearly spells out that the dictates of the act are only applicable to students under the age of 18. Once a student reaches 18, those rights— including the right of disclosure— revert solely back to him or her.
To acknowledge this, many schools ask students to sign consent forms that allow parents to be involved in the students' health discussions. Health professionals say it is uncommon for a student to refuse this consent. It is unknown whether Chuck Mahoney signed a document allowing his parents to be made aware of his health conditions.
In Canada, the privacy and protection of health-care information is covered by the Personal Health Information Protection Act (PHIPA). Passed in 2004, it lists as its main purpose to establish rules for the collection, use, and disclosure of personal health information about individuals that protect the confidentiality of that information and the privacy of individuals with respect to that information, while facilitating the effective provision of health care.
But just how private is the information gathered under the PHIPA? The act is similar to FERPA in terms of release-of-information exceptions, but the Canadian document is far more detailed in the recognition and circumstances under which mental health information can be released, and to whom. However, what is not included in the comprehensive act is a detailed description of the rights or abilities of spouses or parents to access a family member's health information—a fact not lost on many critics of the system. In his book, MentalHealth Social Work (Routledge, 2006), Colin Pritchard argues that health acts deliver too much power and access to the establishment and too few "rights" are granted to the patient (and by extension to the family).
Of course, educational settings are only one area in which privacy-related conflicts can occur. What is the obligation of a patient to disclose health information to spouses, employers, or friends? What are the benefits and pitfalls to this type of transparency? Is it ever a good idea to circulate that information?
While those decisions are best left to individuals, for those who don't want their private health information disseminated, the Canadian Mental Health Association (CMHA) offers direction on establishing what is referred to as a 'lockbox.' While not a term that is found anywhere in PHIPA, the term 'lockbox' refers to the ability of patients to gain some control over the confidentiality of their private information. According to the CMHA Web site, clients in all health settings (including hospitals) have the right to "lock" their personal health information by expressly withdrawing their implied consent for its collection, use, and disclosure. While the provisions of the 'lockbox' empower the patient or client, correcting some of the imbalance of power Pritchard alludes to in his writing, it should be noted that the 'lockbox' can only be utilized during limited situations under PHIPA—and it does not circumvent the extensive situations in which a custodian has the right to access or share the personal health information of a client without consent. Family members could be granted access to a loved one's information for the purpose of providing health care. Agents or institutions like Allegheny College are restricted from sharing personal information unless it is reasonably necessary to have access to that information, it is not reasonably possible to acquire the client's consent in a timely way, or if the client in question prohibits the sharing of the information.
Covering the gray areas
What both the American and Canadian legislations have in common is the provision to share that information with third parties (parents, spouses, pre-arranged individuals) if the health situation of the person involved dictates further exposure of the protected health information. The problem arises when that determination needs to be made. Are administrators at colleges or universities qualified to make that determination? Do they even have full access to a patient's records that would provide them with enough data to make that decision?
It is precisely these gray areas that have led some families to be proactive; arranging legal documentation to cover these situations. The confusion and severity of many mental health issues frequently require immediate action, which can be suspended by the necessity of following established protocols and legalities, such as the ones dictated in PHIPA and FERBA. By the time an exception is granted (if one is deemed applicable) for the client in question, it may be too late. And in too many mental health issues, too late can often end with fatal results for the person in distress. One method of avoiding this is the health care proxy—a legal document gathering increased support and use in the United States.
Lawyer Sharon Kovacs Gruer, of Great Neck, New York, has been active in the area of special needs planning, including areas of mental health, for many years. She strongly advocates the use of the health care proxy. "The health care proxy is a document in which you can nominate someone to act as your advocate," she says. "So, if you can't make health-care decisions for yourself, this would enable someone to do this for you."
Gruer also explains that under the terms of the proxy, the appointed person has full access to the client's health-care records, enabling the agent to make the best decisions possible based on all the available information. She says that from state to state the name of the document and form may change, but the intent and the scope of the document is basically the same.
Privacy concerns, and not just good health-care planning, are part of the reason Gruer has tracked an increase in the numbers of families preparing health-care proxies. Because of health insurance rules, which require medical providers to keep the records confidential—and there are penalties for failing to do so—people are more concerned with their families being able to access their records," she says. While clearly supporting the implementation of a health-care proxy, Gruer cautions that there is no aspect of the document that requires caregivers or those in authority to notify the agents listed in the proxy of a person's worsening condition.
In Canada, the private health information for any adult can be extremely difficult to gain access to under any circumstances… if it can be obtained at all, says Paul Krowchuk,a Niagara Falls lawyer, who specializes in power of attorney issues.
"The named attorney would not have access to information unless the person was declared incompetent—(and the) same thing applies to students," Krowchuk explains. But it can become even more difficult for family members if the proper legal documentation—in this case, a power of attorney form appointing a parent or family member as the legal agent—is not prearranged. Once students "are of age, then the parents aren't entitled to medical records, unless they (the students) are declared incompetent and the parents have the power of attorney," Krowchuk clarifies. In his explanation, Krowchuk stressed that in Canada, a signed power of attorney document for personal care only comes into effect if the donor is incapable. So just by having the power of attorney, the designated attorney cannot access health care information, as he or she can in the American system of the health-care proxy.
One of the main reasons Gruer supports the proxy is its ease of availability (forms are available in hospitals), but the point is to have these documents completed before a health crisis emerges to ensure orderly and complete treatment. "I advise everyone 18 and older to have one. I tell my clients and friends who have kids going to college to get one because, if there's a concern, they have the documentation (they) need to get the information."
However, even with the new avenues of sharing private information, some mental-health clients closely guard their right not to share their information. Joanne Verbanic, the founder of Schizophrenics Anonymous, a support network that boasts 175 chapters throughout the United States and several other countries around the world, including Canada, is such a person. She vigorously protects the sharing of her private information. While very open with her family she says she has witnessed first-hand the negative effects of being too open with personal information.
"One of the first things I tell people is to throw out most of the medical information they have," says Verbanic. "I've heard of people losing their jobs, their friends…even their homes. All because they told…their condition," she says. While she doesn't advocate that people lie about their diagnosis, Verbanic does suggest that mental health clients, specifically people with schizophrenia, be very selective about what they reveal about their mental health, and to whom they reveal it.
"Be careful of how you disclose your illness…I've used the term 'nervous breakdown' or that you have had an emotional disorder. Be very selective with whom you talk with about your illness."
Would a health-care proxy or more easily accessed information have enabled the Mahoney family to protect their beloved son? Unfortunately, we will never know. Is open and honest disclosure of one's personal health information with his or her family the best course of action? Perhaps, but just as every mental health situation and client are unique, so are the issues and contributing factors to making that decision.
Neither privacy nor disclosure guarantees the safety or care of those battling with mental-health issues. But the right combination of government legislation, proactive legal thinking, family support, and personal responsibility can certainly supply the client with a formidable weapon in that battle—and for too many families like the Mahoneys, it may make the difference between life and death.
Brad Peters is a daily newspaper editor whose freelance work has appeared in a variety of publications across Canada.