(This is the last part of a two-part series on the implications of treating patients with dementia. The June 2016 Healthcare Risk Management addressed patient safety risks, and this month’s article addresses potential problems with privacy rules.)
Patients with dementia may require special attention with regard to the Health Insurance Portability and Accountability Act (HIPAA), as they aren’t always able to communicate effectively or give permission for clinicians to talk to others about their healthcare. The issue of HIPAA compliance also is tied closely to the patient’s ability to consent.
Identifying the patient’s personal representative should be a primary task from the outset of care when dementia is involved, says Ronald D. Adelman, MD, medical director of the Irving Wright Center of Aging and co-chief of the Division of Geriatrics Medicine and Gerontology at NewYork–Presbyterian Hospital in New York City. Even when the patient is able to make decisions and provide consent, the clinical care team should anticipate that the situation may change and be prepared to consult the patient’s representative, usually a family member who has been closely involved with the person’s care.
That person already may have the patient’s power of attorney and may be specified in an advance directive. But if not, the clinicians should inquire upfront about whom to turn to when the patient’s dementia hinders care, Adelman says. Don’t assume that the person accompanying the patient will be the healthcare proxy, he says, even if it is a close relative such as a son or daughter. The patient may direct clinicians to a different family member who is not present or even an attorney.
“If the patient comes with a hired caregiver rather than a family member, that person is probably not the personal representative or someone who can receive personal information,” Adelman says. “It’s really critical from the beginning, with the patient’s participation, to determine who to turn to if the patient becomes profoundly demented. At that point, we know who needs to be engaged and can do so without interrupting care.”
At the same time, clinicians should be careful not to engage in what Adelman calls “ageism” or “dementiaism” by assuming that all elderly people with cognitive disabilities are incapable of understanding and directing their own healthcare. A diagnosis of dementia does not automatically mean the patient cannot make decisions, he says, so clinicians must be careful in assessing the patient’s clarity.
Adelman recalls a patient who entered the hospital with pneumonia. When the residents saw that she had a diagnosis of mild dementia, they stopped interacting with her and directed all conversation to her husband. The woman was greatly affected by the slight, even after it was brought to the residents’ attention. She said she felt as if she wasn’t being treated as a person anymore and feared that there would be more instances of that in her future healthcare, especially with regard to critical decisions about end-of-life care.
“Some people have just very mild cognitive deficits and are able to understand what’s going on. If they don’t understand some of the intellectual information, they might understand the emotional components,” Adelman says. “The key is to learn how to communicate with the right people and do it inclusively. If you do it properly, it can be supportive and soothing to the person with cognitive impairment.”
Dementia patients who still are capable of anticipating future needs and communicating their preferences should be provided counseling, which may involve family members and the future healthcare proxy, to make important decisions and document them for the record, Adelman says. This step isn’t always possible by the time a patient with dementia enters the healthcare facility, but the information can ease future clinical care and help ensure the patient’s wishes are respected.
Family Exchange Allowed
Communicating about a patient’s care with someone not authorized to receive that information can be a HIPAA violation. Mary Anne Theiss, RN, MS, JD, PhD, CNE, a faculty member with the Kaplan University School of Nursing in Fort Lauderdale, FL, says that the good news is that HIPAA anticipates situations involving dementia or other cognitive impairments, and it allows clinicians to share information “directly relevant to the involvement of a spouse, family member, friend, or other person identified by that patient.” The key is that the person must be identified by the patient, and the patient also has the power to denote that certain people are not to receive information or make decisions, she says.
“HIPAA was not intended to hinder appropriate disclosure and communication with people who can help the patient. Don’t allow care to be compromised because you think HIPAA means you can’t talk to anyone about the patient,” she says. “It has to be the appropriate person, identified by the patient, unless it is an emergency situation, and you have to assume close relatives would be authorized.”
Theiss notes that clinicians may be challenged by the way some dementia patients vary in their cognitive abilities from one moment to the next. She recalls such incidents with her own mother, who had Alzheimer’s. “There are times when a person who has dementia will be lucid and capable of making decisions about their care. It is important not to look at the dementia diagnosis, or your decision that the patient cannot make decisions, as a final assessment that will be the same tomorrow,” Theiss says. “Anyone caring for the patient needs to anticipate these changes and respond accordingly, rather than assuming that the patient is the same as he or she was yesterday.”
In lucid periods, patients have the right to reject or alter healthcare proxy agreements that they made previously, she notes. Hospitals should have policies and procedures that direct clinicians to reassess a dementia patient’s abilities frequently and respect the individual’s rights whenever possible, Theiss suggests.
Erring on the side of caution is necessary in this regard, says Scott Johnson, JD, professor of law at Kaplan University’s Concord Law School in Los Angeles. He recommends a policy that encourages frequent reassessments of the patient’s cognitive ability, especially when there is no advance directive. “This issue can be most difficult when a patient is refusing care,” he says.
“There are circumstances in which healthcare providers are allowed to provide care even when the patient refuses, but those are very limited. For the most part, the law sides with a patient who says ‘no’ to care, and a diagnosis of dementia does not automatically change that,” Johnson says. “When a patient with dementia refuses care, you have to rely on your assessments, advance directives, and, if necessary, the decision of the person designated to make these decisions.”
Clinicians should be reminded, however, that they are not mere pawns in this process. In difficult situations involving dementia patients, HIPAA allows for “professional judgment” by clinicians, notes Nicole DiMaria, JD, a healthcare attorney with the law firm of Chiesa Shahinian and Giantomasi in West Orange, NJ. “If the patient is incapacitated or not present, that’s an area where HIPAA says the health professional can use his or her professional judgment, and if it is in the patient’s best interest, the disclosure can be made,” she says.
Even when the patient has designated a personal representative, clinicians still have the ability to intervene in the patient’s best interest, DiMaria says.
“Under HIPAA, a personal representative must be treated as the individual, unless the healthcare professional feels that there is a situation of abuse or neglect and it would not be in the best interest of the patient to treat that person as a representative,” she says. “In that circumstance, they can decline to do so.”
Ronald D. Adelman, MD, Medical Director, Irving Wright Center of Aging, Co-Chief, Division of Geriatrics Medicine and Gerontology, NewYork–Presbyterian Hospital, New York City. Telephone: (212) 746-7000.
Nicole DiMaria, JD, Chiesa Shahinian and Giantomasi, West Orange, NJ. Email: [email protected].
Scott Johnson, JD, Professor of Law, Kaplan University’s Concord Law School, Los Angeles. Email: scott.[email protected].
Mary Anne Theiss, RN, MS, JD, PhD, CNE, Kaplan University School of Nursing, Fort Lauderdale, FL. Email: [email protected].