This article is part of a yearlong occasional series on late-in-life health care — when chronic illness or a constellation of medical problems can cause a cascade of new needs, complications and worries.
In recent years, individuals who provide late-in-life care to a family member have been increasingly asked to take on complex nursing and medical tasks that were once performed only in hospitals and nursing homes by trained professionals — procedures such as cleaning wounds, operating feeding tubes and giving drug injections. Yet, despite the difficulty and importance of these tasks, family caregivers are frequently given little if any hands-on training about how to safely and effectively do them. In addition, many older caregivers — often the spouse of the person needing care — have their own health issues that make performing such tasks very problematic.
Some advocacy groups, particularly those with older constituencies, are trying to get communities to take action to help family caregivers better cope with handling medical and nursing tasks at home. One of those groups is AARP, which has begun advocating for passage of a bill called the Caregiver Advise, Record, Enable (CARE) Act in state legislatures across the nation. Among other things, the bill would require hospitals and rehabilitation centers to explain and offer live, hands-on instructions about medical tasks that a caregiver is expected to perform at home before the caregiver’s family member is released from the facility.
Two states, Oklahoma and New Jersey, passed the CARE Act in 2014. Minnesota’s legislators are expected to take up the bill in the 2015 session.
To understand more about this particular caregiver issue, MinnPost spoke with Susan Reinhard, the senior vice president of the AARP’s Public Policy Institute. An edited version of that conversation follows.
MinnPost: What are some of the complex medical and nursing tasks that family caregivers are now expected to provide at home?
Susan Reinhard: They’re the kinds of things that make nursing students tremble the first time they do it. If it’s managing medication, it’s not just a single pill. It’s lots of different pills that have to be given several times a day. People worry about the drug interactions and the side effects, and they feel they need to monitor the side effects. Or it may include an injection or eye drops or ear drops — none of which they’ve been taught how to give. It’s also things like colostomy care, wound care, tube feedings, catheter care, special diets that are very complicated, use of technology — even ventilator care. It’s a long list.
In our report [“Home Alone: Family Caregivers Providing Complex Chronic Care”], we describe all these different things. Almost half of family caregivers are performing these complicated tasks, and they’re usually doing more than one. That’s our biggest concern, particularly because they rarely get the training they need to know how to do them.
MP: When did this start? When, historically, did family members begin to be expected to do these complex medical tasks at home?
SR: I don’t have specific data on that, but if you just think about it, over the years, families have been expected to take care of their sick family members. You have a child, and you take their temperature, and you then give them a Tylenol. It’s sort of expected that you’ll be able to do that. What’s newer about this is that we now have more people who are aging and people with disabilities who require more complicated tasks. We also have new technology. Years and years ago you didn’t have tube feedings, and we didn’t have near the number of different kinds of medications that we have today. The technology keeps increasing, and people who need the technology are increasing. You put that together and the question is, who’s going to help? It’s not going to be a nurse standing in your house 24 hours a day.
MP: AARP has published two reports on this topic in recent years [“Home Alone” in 2012 and “Family Caregivers Providing Complex Chronic Care to Their Spouses” in 2014]. What does your research tell us about how caregivers are coping with these medical responsibilities?
SR: Many of them are very worried about what they’re doing, but they don’t feel they have a choice. They go to the hospital, they pick up their mom or dad or their husband or whoever, and they’re given a list of things that they’re supposed to be doing. They don’t think they can say no. So they express stress, concern and, as I said, worry that they’re going to make a mistake. They also report much higher levels of depression and physical strain than caregivers who are not doing these kinds of tasks.
MP: Are they concerned that their inexperience with these procedures might harm the family member they’re caring for?
SR: Yes. I don’t mean to say that all family caregivers are worried. Some, after all, are nurses. But many of them are worried. They want to make sure they’re doing a good job for the person they’re caring for.
MP: One of your reports found that spouses who perform these medical caregiving tasks face special challenges. What are those challenges?
SR: For one thing, they tend to be older [than other types of family caregivers]. They also tend to have lower educational levels, to have less income, and to be less likely to be employed. They don’t have as many resources, both people resources and economic resources, as family caregivers who aren’t spouses. On top of that, they are expected to provide the care, and therefore fewer people help them. They’re much more isolated. They don’t get as much support from family and friends, and they’re far less likely to have home visits from healthcare professionals. So I consider them the most alone. The only caregivers more “home alone” than spouses are those who are caring for people with cognitive issues. Of course, it could be both.
MP: The reports also discuss how family caregivers receive inadequate — or often nonexistent — training to perform these medical tasks.
SR: When people get training, it’s usually for wound care. If you’re going to be doing colostomy care or [changing] sterile dressings, you’re also likely to get some training. But even then, a third of the individuals [AARP surveyed for the reports] said they got no training. There’s not much training going on. There isn’t even a live demonstration going on that shows you, here, this is how you do it. [The training] is more typically written instructions that are handed to you as you’re walking out the door. Literally. Even when you’re expected to give injections. I am a nurse by background, and it just seems so startling to me that people are handed a prescription to take to the pharmacist for needles, syringes and a vial. You’re then supposed to know how to do this: how to stick the needle in and draw it down. Again, nursing students take a long time to learn how to do it, so it’s mindboggling to me that so much is happening with so little support.
MP: The caregivers also receive very little follow-up support, right? Nurses aren’t coming out to their homes to train them, either.
SR: That was another thing that was surprising. Most are Medicare-eligible. They need a referral for a visiting nurse, but very few are getting those referrals. I don’t know why. That would be a different study. AARP and others have advocated for something called transitional care, and some [patients] are very fortunate to get a referral, and sometimes they even have a nurse practitioner following them. But it’s not what commonly happens. That’s our concern. Everybody needs support, not only those who are lucky enough to get a referral.
MP: But the best place for the family caregiver to receive the training is in the hospital, before the patient goes home.
SR: Part of it is that when you are in the hospital, everything is going on, and fast. The family caregiver often feels invisible. They might get help if they ask for it. If they ask a nurse or doctor, “Could you show me how to do this?” I really have a hard time believing that the nurse would say, “No, I won’t show you.” The problem is they don’t know to ask. I really believe that all health-care professionals have to anticipate [the family caregiver’s] needs. What does this person need to know, and why don’t I show them? If [the caregiver] says, “No, thanks,” then OK. But why don’t we just try it? That’s what we’re trying to instill into everyone’s mind.
MP: Is this a financial issue for the hospitals?
SR: I think it’s been a lack of awareness. They think there’s going to be someone there, maybe a visiting nurse [when the family gets home]. They assume this isn’t their job. Is it expensive [for the hospital]? It shouldn’t be. The nurse is already there. She’s giving the injection or she’s doing the tube feeding, and often the family caregiver is right there. Of course, you may need to arrange for the [family caregiver] to come in for the training. So it means some accommodation of the patient and the family.
MP: It sounds like a systems failure then.
SR: Yes. A systems failure is a good way of putting it. It’s not just the individual nurse or the individual therapist, it’s a systems issue. The CARE Act would help address that issue. It says before the person is discharged, the caregiver must be notified — ideally, a full day ahead — so they can get ready. And if they’re expected to do any of these medical nursing tasks, they must have an opportunity to actually observe [the procedures], to have a live demonstration. It’s very basic.
MP: In addition to supporting passage of the CARE Act, what can individuals and communities do to help family caregivers cope with this issue?
SR: First, they can acknowledge that there are lots of family caregivers in their midst. They need phone calls. See how they’re doing, and then ask them if they need some help. Encourage them to call the doctor’s office or the visiting nurse or another healthcare professional to learn how to do what they are doing. They have a right to that information. Encourage them and support them.
MP: And families? They need to be proactive, right?
SR: Yes. It’s ideal if a family member is aware that they deserve this help. You should not be leaving a hospital unless you know what you’re doing and feel comfortable about doing it. Otherwise, it’s what’s known as an unsafe discharge, which is technically against the law. You have every right to say, “I am not taking my mother home or my husband home because I don’t feel it’s safe.” That’s the word I give to everybody. Tell them you don’t feel safe and that you need someone to show you how to do this.
MP: And families and friends need to make sure that caregivers aren’t isolated.
SR: That’s right. That’s the biggest thing that other family members can do. Reach out and call them, visit them, do anything you can to help people not feel so isolated. Ask them directly, “How are you doing? What can I do to help? How can I help you find the help that you need?”
MP: And what about others in the community?
I also want nursing students and medical students and dietician students to be taught that patients and families have to learn to take care of themselves. We do not stay with them forever. We are really only guests in their lives for very short periods of time. Our job is to teach and support [patients and their family caregivers] so that they have the confidence, the skills, and the knowledge to perform these tasks. That is the strongest thing we can do.
MinnPost’s late-in-life series is funded through a regrant by Allina Health from the Robina Foundation and is conducted with media partners Ampers and Twin Cities Public Television (tpt), whose documentaries are focusing on Minnesotans enrolled in a multiyear Allina study.