Increasing burden on family caregivers: Ethical concerns
Increasing burden on family caregivers: Ethical concerns
Almost half of family caregivers perform nursing and medical tasks for family members with chronic physical and cognitive conditions, often without any training, in large part because hospitals are discharging very sick patients more quickly, according to a September 2012 report released by the AARP Public Policy Institute and the United Hospital Fund. (To view the report, Home Alone: Family Caregivers Providing Complex Chronic Care, go to http://www.uhfnyc.org/publications/880853.)
The survey of 1,677 family caregivers reports on the complexity of tasks that caregivers provide, and challenges the common perception of family caregiving as a set of personal care and household chores that most adults already do or can easily master. Three out of four caregivers surveyed provided medication management, including administering intravenous lines and injections, and more than one-third of those who provided medical and nursing tasks reported doing wound care. Other frequently provided tasks included operating specialized medical equipment and monitors.
Carol Levine, director of United Hospital Fund's Families and Health Care Project and an author of the report, says that while the report's findings didn't surprise her, many health care providers were probably unaware of what family caregivers do. "A lot of people live in a fanciful world where there is a home health care nurse that takes care of everything, and private insurance or Medicare pays for it, but that is not reality," she says.
Inadequate training
Family caregivers reported that they didn't get much training in the complex medical tasks they performed, despite the fact that their chronically ill family members were in and out of hospitals and emergency departments. However, the health care providers themselves would probably insist they had showed the family member all they needed to know, says Levine. "The lack of alignment between what health care providers think they are communicating and what family caregivers actually experience is very great. That, in itself, is an ethical issue," she says.
The question is whether providers have to provide training that caregivers can actually understand, or just "check it off their list," says Levine. "I think physicians have a responsibility, not necessarily to actually do the training, but to ensure that this training is taking place. Right now, there is a lot of handing off — 'The social worker will take care of that,' 'The nurse will tell you about the medications,' 'The physical therapist will show you what to do with the equipment' — without any serious accountability that this is actually in place."
Everyone on the team should understand the importance of training the person who will be caring for the patient, emphasizes Levine. "Some professionals develop a kind of casual attitude because they have been doing these tasks for years," she says. "They don't understand that this is brand new for the family caregiver. It's different when you are doing it on a person you love, not on a volunteer or student, and without somebody watching over your shoulder making sure you don't make a mistake."
There is an individual ethical responsibility on the clinician's part to understand the gravity of what is being expected of caregivers, and a broader organizational responsibility to see that those needs are built into professional education and practice standards, says Levine. "The first rule of medical ethics is, 'Do no harm.' If you send somebody home with a feeding tube or on a ventilator or intravenous line, and the person taking him home doesn't know what she is doing, you are opening up the door to harming the patient," she says. Professionals might fail to warn caregivers performing wound care about the need to maintain a sterile field, for example.
In addition, untrained family caregivers might be terrified of making a mistake and harming the patient. "A lot of the things they are expected to do are painful or embarrassing, and potentially very disruptive to an intimate relationship," she says. "That may not equate with leaving a scalpel in somebody, but that is harm, in my view."
Misperceptions persist
Providers might assume that family caregivers are doing only basic tasks such as cooking and shopping, but that is not reality for many people. "It's not deliberate avoidance — it's just not in the framework in which most physicians work," says Levine. "A lot of this has to do with physicians being trained in hospital settings with relatively little opportunity to see what actually goes on in the home."
In the United Hospital Fund's Transitions in Care Quality Improvement Collaborative, hospital teams found that in many cases, the family caregiver wasn't even identified in the medical record. Some electronic medical records lacked a field for the individual's name. Even if there was a place to list the family caregiver, the information was often simply, 'the wife,' 'the daughter,' or 'next of kin,' instead of the person's name and contact information. "Even when professionals do identify the caregiver, there are all kinds of barriers — their availability or their understanding of how to recognize and respond to changes in the patient's condition," says Levine. "Those are real difficulties, but you have to start by at least knowing who the family caregiver is and how to reach that person. If the caregiver knows know how to reach someone who can help, you have a much better chance of getting a good outcome."
The importance of family caregiving is getting more attention, but at a time when resources are more constrained, notes Levine. "The population is aging, with many more people with multiple chronic conditions taking multiple medications," she says. "More responsibility is being pushed onto family caregivers. That is the world we are living in, and it is not going to go away."
Source
Carol Levine, Director, Families and Health Care Project, United Hospital Fund, New York, NY. Phone: (212) 494-0755. Fax: (212) 494-0801. E-mail: [email protected].
Almost half of family caregivers perform nursing and medical tasks for family members with chronic physical and cognitive conditions, often without any training, in large part because hospitals are discharging very sick patients more quickly, according to a September 2012 report released by the AARP Public Policy Institute and the United Hospital Fund.Subscribe Now for Access
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