April 22, 2002
U.S. Department of Health and Human Services
Office for Civil Rights
Attention: Privacy 2
Hubert H. Humphrey Building, Rm. 425A
200 Independence Avenue, S.W.
Washington, D.C. 20201
Dear Sir or Madam:
On behalf of the United States Conference of Catholic Bishops, we write to offer the following comments on the Standards for Privacy of Individually Identifiable Health Information (hereinafter "Regulations"). See 67 Fed. Reg. 14776 (March 27, 2002) (inviting comments).1/
Our concerns about the Regulations are three-fold.
First, despite mollifying language in the Preamble, the Regulations make it more difficult in some circumstances for parents to obtain access to health information about their own children. It is inappropriate, in our view, for the federal government to erect barriers between parents and their children. This is particularly so in matters as essential to children's well-being as their health. Parents generally need medical information about their children to make responsible decisions about their care. We urge HHS to modify the Regulations to provide that nothing in the Regulations shall bar or prevent any covered entity or other person from providing a parent, guardian, or person in loco parentis with any health information concerning his or her minor child (and, likewise, that nothing in the Regulations shall bar or prevent any parent, guardian, or person in loco parentis from obtaining any such information about the child).
Second, absent patient consent, the Regulations generally bar the disclosure of health information about a person to relatives and others in circumstances where disclosure may prevent harm — even deadly harm — to that person or others. To HHS's credit, the Regulations permit disclosure if there is a "serious and imminent" threat to health or safety. But by the time a threat becomes "serious and imminent," disclosure may be too late to prevent harm. Incidents of violence in our Nation's schools and workplaces underscore the problem. If a child or adult has suicidal or homicidal thoughts, for example, disclosure to parents, relatives, or others may be appropriate and necessary to avert the possibility of harm before the threat becomes — indeed, precisely so that the threat does not become — "serious and imminent." For these reasons, the Regulations should be amended so that disclosure is not barred when the covered entity reasonably believes the person may harm himself/herself or others.
Third, while it is laudable that HHS allows clergy access to so-called directory information, we urge HHS to make two adjustments in that provision. Because "clergy" as used in the Regulations might be taken to refer only to "ordained" ministers, HHS should clarify that for purposes of these Regulations "clergy" refers to any person designated for ministry by a church or religious community, whether ordained or not. This is especially important for the Catholic practice of having lay ministers and non-ordained religious visit and minister to persons who are in hospitals, nursing homes, and other health care facilities. At the very least, HHS should clarify that this is the intended meaning of the Regulations. Second, if there is to be any presumption in cases of incapacity or emergency medical care, we believe it should operate in favor of disclosure of directory information to clergy. We urge HHS to modify the Regulations to permit disclosure to clergy unless it is inconsistent with the individual's stated wishes.
I. Giving Parents Access to Their Children's Medical Records
The Applicable Provisions
The Regulations establish a national standard to govern the disclosure of health information about a minor to a parent, guardian, or person acting in loco parentis, and therefore represent a serious assertion of authority on the part of the federal government.
Absent a stated exception, the Regulations generally bar the disclosure of medical information about individuals. Disclosure to a parent of health information pertaining to an unemancipated minor is generally permitted under the Regulations, with exceptions set out in section 164.502(g).
Subsections 3 and 5 of section 164.502(g) warrant particular scrutiny. Subsection 3 provides that if a parent has authority under applicable law to act on behalf of an unemancipated minor in making decisions about his or her health care, a covered entity must treat the parent as a personal representative with respect to the health information at issue (i.e., the parent stands in the shoes of the minor), except in any of three circumstances:
- The minor consents to the health care service and no other consent is required by law.
- The minor may lawfully obtain the service without parental consent and the minor, a court, or another person authorized by law consents.
- A parent has assented to an agreement of confidentiality.
HHS recognizes that States may already have laws that regulate the disclosure of health information about minors to their parents. The Regulations "piggyback" upon State laws by permitting what States permit and forbidding what States forbid. Section (g)(3)(ii) provides:
Notwithstanding the provisions of paragraph (g)(3)(i) of this section:
- A covered entity may disclose protected health information about an unemancipated minor to a parent, guardian, or other person acting in loco parentis if an applicable provision of State or other law, including applicable case law, permits or requires such disclosure; and
- A covered entity may not disclose protected health information about an unemancipated minor to a parent, guardian, or other person acting in loco parentis if an applicable provision of State or other law, including applicable case law, prohibits such disclosure.
Subsections 3 and 5 of section 164.502(g) are both problematic.
Under subsection 5, it would seem all too easy for a covered entity, such as an abortion clinic, to assert that a child "may" be subjected to abuse or "could" be endangered, and that it is in the child's "best interest" not to disclose information to the parents. Judgments about whether a child faces a reasonable possibility of abuse or endangerment are ordinarily made by state child protection agencies, not private actors with a vested interest in the outcome. These federal Regulations essentially delegate to private entities the government power — what is typically a state government power — to decide whether a child "may" be subjected to abuse or "could" be endangered and whether disclosure is in the child's "best interest." This would be an extraordinary appropriation and transfer of power were it undertaken by Congress, let alone a federal agency, assuming Congress even has the power to reorder parent-child relations in such a manner. Any government (state or federal) with actual authority to regulate the flow of information about minors to their parents would need to exercise particular caution to avoid infringing the fundamental and constitutional right of parents to direct the upbringing of, and care for, their children. For a federal agency, in turn, to confer this authority (as HHS has) upon private entities — entities which may have financial incentives, mixed motives, or private agendas of their own — is even more extraordinary. Given that the vast majority of parents love and strive to serve the best interests of their children, it should not simply be assumed (as these Regulations seem to assume) that a private non-governmental party — a party that is a complete stranger to the minor and his or her parents, a party that may have a profit motive in guaranteeing "confidential" services to minors2/ — can be more trusted than the child's own mother and father.
In a nutshell, subsection 5 is objectionable because it gives private entities a new federally-created power to decide whether to give parents health information about their own children based on the entities' own private judgment about what is in the minor's best interests — and then only in cases where they think the child's best interests would be served by not providing information to the parents.
Subsection 3 of section 164.502(g) also establishes a federal barrier in some cases to parents' access to health information about their children. This can occur in two instances: when State law, including applicable case law, is (a) silent or (b) prohibits disclosure.
In the first scenario (i.e., when State law is silent), the rule applies which generally allows disclosure to parents, but with the three exceptions described above. Those exceptions are troubling in some of their potential applications.
For example, if a six-month-old accident victim is wheeled into the emergency room of a hospital where life-saving care is lawfully provided in the absence of parental involvement because the parents cannot be reached, the Regulations would seem to say that, if State law is silent, medical information about that child's care cannot subsequently be provided to the parents without the youngster's "consent," which obviously makes no sense in the context of a 6-month-old.3/ Furthermore, the power to request an amendment in medical records, or the right to be notified of rights to privacy, would seem under the Regulations to lie with the six-month-old child, not his or her parents. That could not be the intended result.
The new subsection g(3)(iii) does not cure the problem that occurs when State law is silent. That subsection states that "[n]otwithstanding the provisions of paragraph (g)(3)(i) of this section, a covered entity must, consistent with State or other applicable law, provide a right of access ... to either ... [a] parent ... [or] minor ... [or] [b]oth." [Emphasis added.] If State law is silent, however, it may not be clear whether disclosure would be "consistent with State law." Furthermore, the phrase "consistent with State law" suggests that there must be some affirmative authority for the disclosure (unless by that phrase HHS actually means "not inconsistent with State law").
The second scenario (i.e., when State law forbids disclosure) is also problematic, for the Regulations would add fresh federal penalties to the violation of a State statute, regulation, or court case that forbids disclosure of health information to parents. There seems no reason to presume that States somehow need help from the federal government in enforcing State laws. One may or may not be in violation of the federal Regulations by disclosing information about a minor to his or her parents, depending on the status of State law at that particular time – a rather unsettling proposition when one considers that State law on these issues is not static or always certain. Creating a federal sanction for enforcement of State laws that might be construed to prevent disclosure may have a further chilling effect on the ability of covered entities to share with parents medical information about their children.
There is no denying the importance of the interests at stake here. As the Supreme Court has observed, the interest "of parents in the care, custody, and control of their children ... is perhaps the oldest of the fundamental liberty interests recognized by this Court." Troxel v. Granville, 530 U.S. 57, 65 (2000), citing Pierce v. Society of Sisters, 268 U.S. 510 (1925); Meyer v. Nebraska, 262 U.S. 390 (1923). The Court explained in Pierce, and repeated in Troxel, that "[t]he child is not the mere creature of the State; those who nurture him and direct his destiny have the right, coupled with the high duty, to recognize and prepare him for additional obligations." Troxel, 530 U.S., at 65; Pierce, 268 U.S., at 535. "It is cardinal with us," the Court wrote, "that the custody, care and nurture of the child reside first in the parents, whose primary function and freedom include preparation for obligations the state can neither supply nor hinder." Troxel, 530 U.S., at 65-66, quoting Prince v. Massachusetts, 321 U.S. 158 (1944). "The history and culture of Western civilization reflect a strong tradition of parental concern for the nurture and upbringing of their children." Troxel, 530 U.S., at 66, quoting Wisconsin v. Yoder, 406 U.S. 205, 232 (1972). This fundamental interest of parents in caring for their children counsels strongly against imposing a new federal barrier between parents and their children — especially on a matter as important to the well-being of children as their health.
By intruding upon parents' legitimate interest in providing care for their children, the Regulations have the potential affirmatively to harm children. Naturally, if insulated from information about their children's health care, parents will be denied an opportunity to give providers meaningful and relevant information about their children (e.g., allergies, vaccinations, other past medical treatment, and family history), information that may have a direct bearing on the quality of their children's health care.
For the foregoing reasons, we believe the Privacy Regulations should be modified to provide that nothing in the Regulations shall bar or prevent any covered entity or other person from providing a parent, guardian, or person in loco parentis with any health information concerning his or her minor child, and that nothing in the Regulations shall bar or prevent any parent, guardian, or person in loco parentis, from obtaining any such information concerning that child.
II. Permitting disclosure to avert risks to the Health of Patients and Others
Section 164.512(j) provides that protected health information can be disclosed if the covered entity believes in good faith that the disclosure is "necessary to prevent or lessen a serious and imminent threat to the health or safety of a person or the public," and the person or persons to whom the disclosure is made is reasonably able to prevent or lessen the threat. Disclosure is therefore conditioned upon a good faith belief that there is a "serious and imminent" threat to health or safety.
By the time a threat becomes "serious and imminent," however, disclosure may be too late to prevent harm. Reports of violence in our Nation's schools and workplaces are an argument in favor of early intervention. If someone (a child, for instance, or even an adult) has suicidal or homicidal thoughts, and the covered entity in good faith believes he or she may harm himself/herself or others, it is common sense that disclosure to parents, relatives, or others may be appropriate, and the covered entity should have the discretion to make such a disclosure as a means of averting or mitigating harm before a threat becomes "serious and imminent." Indeed, disclosure may be appropriate precisely so that such threats do not become "serious and imminent." Similarly, in cases involving addictive behaviors, it may be prudent for a health care provider to involve others well before the behavior presents a "serious and imminent threat" to the safety of that person or others. In the case of minors especially, it is important to remove impediments to the involvement of parents.4/
For these reasons, the Privacy Regulations should be amended so that disclosure is permitted when the covered entity has a good faith belief the patient may harm himself/herself or others. Given the interest of parents in the welfare of their children, if the patient is a minor, the Regulations should permit disclosure to the parents irrespective of the covered entity's beliefs about whether the parent may be able to prevent or lessen the harm.
III. Clergy Access to Directory Information
The Regulations provide that health care facilities may maintain directories, and that these directories may include a patient's name, location in the facility, a general description of his or her condition, and religious affiliation. Section 164.510.
HHS wisely permits facilities to disclose directory information to clergy. This is important, as HHS recognizes, because it allows clergy "to identify the members of [their] faith" (65 Fed. Reg. at 82662) in hospitals, nursing homes, and other facilities, and thereby accommodates the free exercise of religion. See 65 Fed. Reg. 82944 (Dec. 29, 2000) (technical corrections to the final rule which note that the purpose and effect of section 164.510 is "to alleviate significant governmental interference with the exercise of religion").
We suggest two changes in section 164.510. First, because there is no regulatory definition of "clergy" and it might be understood to refer only to "ordained" ministers,5/ HHS should clarify that for purposes of the Regulations "clergy" refers to any minister designated by a church, whether "ordained" or not. This is particularly important for the Catholic practice of designating lay ministers and non-ordained religious to visit, offer Communion, and otherwise minister to persons who are in hospitals or other institutions. Accordingly, we ask HHS to define "clergy" as follows: "any person designated for ministry by a church or religious community, whether or not ordained."
Our second suggestion pertains to the conditions under which directory information can be disclosed. The Regulations provide that in cases of incapacity or emergency medical treatment, the covered entity is permitted to disclose directory information to clergy if two conditions are fulfilled: the disclosure is (a) consistent with the patient's prior expressed wish, and (b) in the individual's best interests as determined by the covered health care provider in the exercise of its professional judgment.
We believe that if there is to be any presumption with respect to directory information in cases of incapacity or emergency medical care, it should operate in favor of disclosure. We therefore recommend changing the rule to permit disclosure to clergy unless the disclosure would be inconsistent with the individual's stated wishes. Disclosure should not depend on the provider's assessment of the individual's "best interests."
The importance of eliminating any presumption against clergy access to directory information hardly needs to be belabored. In the Christian tradition, for example, compassion toward the sick is rooted in Jesus's own ministry. The sacraments of the Church are Christ's own action on behalf of both the person who receives them and the entire Body of Christ to which the believer is mystically united. For persons who are in danger of death from sickness or old age, the celebration of the Anointing of the Sick provides a particular gift of the Holy Spirit and unites that person with the passion of Christ. See Catechism of the Catholic Church (2d ed.), ¶¶ 1520, 1521. For those who are dying, Communion has a particular significance and importance. Id. ¶ 1524. Though important, the secular interest in keeping medical information confidential pales in comparison with the life-transforming mystery that Christians believe is at the heart of the Church's ministry to the sick and dying.
If any additional support were needed for removing impediments to clergy access to directory information, it can be gathered from the fact that the interest in confidentiality bends to secular interests far less weighty than religious exercise. See, e.g., section 164.514(f) (authorizing disclosure for fundraising purposes); section 164.504 (authorizing disclosure to business associates for data collection, recordkeeping, and other business purposes). Plainly, the regulations should always favor disclosure to clergy absent the patient's explicit refusal.
We are grateful for the opportunity to comment on the Regulations, and we urge HHS to adopt the recommendations set out in this letter.
Mark E. Chopko
Michael F. Moses
Associate General Counsel
- The United States Conference of Catholic Bishops is a nonprofit corporation organized under the laws of the District of Columbia. Its members are the active Catholic Bishops in the United States. The Conference is a vehicle through which the Bishops can speak cooperatively and collegially on matters affecting the Catholic Church, its people, and society in general. The Conference advocates and promotes the pastoral teaching of the Church on diverse issues, including the promotion of health care for all persons and recognition of parents' right and responsibility to care for, and direct the upbringing of, their children.
- In promoting and marketing abortion to teenage girls, for example, Planned Parenthood operates an Internet site aimed at teenagers (www.teenwire.com) in which assurances of "confidentiality" (construed as secrecy from parents) figure prominently.
- The problem is not remedied by section 164.510(b). That section permits disclosure of health information to a family member or other relative that is "directly relevant to such person's involvement with the individual's care or payment related to the individual's health care," but only (i) if the patient consents or, (ii) if the opportunity to object or consent cannot be provided
- Section 164.502 will not always be a safe harbor for health care providers who wish to involve the parents of a troubled minor. E.g., the minor may be emancipated, or unemancipated yet receiving the health service without parental consent.
- See Webster's New World Dictionary (3d college ed. 1988) (defining "clergy" as "persons ordained for religious service"). In the Catholic Church, "clergy" denotes ordained persons.