Navigating the labyrinthine world of healthcare when a loved one has a chronic condition or new diagnosis can be a huge challenge. Despite the best of intentions and effort, it’s easy to get in over your head as a caregiver. There is a great deal you can do to ease communications between your loved one and his or her medical team and to access the resources you both need. But if you feel you can’t do it all yourself, independent patient advocates are an option.
Debby Deutsch, a board certified patient advocate and Nancy Arnold, an RN patient advocate, spoke with Guideposts.org about what they do, as well as steps that caregivers can take to better assist family members when they need this sort of support. Both are with Patient Care Partners, a private patient advocacy firm which Deutsch founded.
Guideposts.org: Can a family caregiver be an effective patient advocate?
Debby Deutsch: The family member of course knows the patient very, very well. However, there are some pitfalls in that. Our medical systems are incredibly complicated. Federal and state benefits and insurance issues are very complicated. So, unless a family member has a medical background, they’re probably going to run into some hurdles at some point and that’s the point where people reach out to us. They say to us, “I tried to do this, I don’t have the time. It’s much more complicated than I thought.” There can also be an emotional factor.
Nancy Arnold: We have at our fingertips, for example, resources that other people would not know about, mainly because we’ve worked in the health industry for as long as we have. We know how to lay out options to people so that they can understand what their doctor is saying. It really can take a professional advocate, particularly for people with chronic or complicated diagnoses that just require so much knowledge about the illness, as well as the system—the specialists that are available, that kind of thing.
DD: We find that what we are really doing is translating. We are translating what the patient or the family is telling us in regards to maybe changing conditions or a new diagnosis. We’re translating that to the healthcare team. And then, even more importantly, we’re translating back what the healthcare providers are saying to the patient and family.
Guideposts.org: Depending on the condition of the loved one, family caregivers generally have to make huge decisions. But it’s also important for the loved one to be as involved as possible in his or her own medical decisions and treatment, correct? How do caregivers walk that fine line?
DD: It varies from state to state in regards to how healthcare powers of attorney are set up. But we can’t, nor should we, make decisions for family members if they are still able to make decisions for themselves. So, what family members can do is help patients understand what the various options are. Let’s say the patient has a cancer diagnosis and an oncologist is laying out two or three courses of treatment. Family members can help make sure that the patient understands what those courses of treatment are—the pluses and minuses—and what that might mean for them in terms of their own personal goals and feelings, and then help them make the best decisions for themselves, based on the information that they have received. The next step, of course, is being prepared to pivot as things change, because things will change.
Guideposts.org: What can family caregivers do to better handle communications during medical appointments?
NA: I would encourage family members to be respectful of the physician’s time. Generally, we get between eight and 15 minutes for a usual appointment with a physician. So, I would encourage any family member to be very, very organized and to keep a list of changing conditions and a list of questions that the patient might have. By all means, keep that list with you. You don’t want to have to say, “I left my list on the kitchen table.”
DD: And if you have that list in front of you, you’re keeping in mind that you have three questions, whereas if you don’t, the whole appointment can get derailed by that first question and you might not get to the subsequent concerns.
Guideposts.org: How can you be an effective advocate during an appointment or hospital stay when you are not allowed inside the room with your loved one?
NA: You can set up a phone for when the patient will get into the room and they can dial you and you can be on speakerphone with them for that appointment.
Guideposts.org: If a home care aide is part of your loved one’s care team, can the aide also help you to stay apprised of your loved one’s changing condition?
DD: The home health aide is a very valuable part of the team. They are seeing things and hearing things from the patient that sometimes no one else will, so they can be a great source of information and I would encourage regular communication with them. They do so much that is of great value that you really want to rely on them as the valued part of the medical team that they are.
Guideposts.org: What can the family caregiver do to ease communication when the loved one is stressed or upset during an appointment?
NA: I think that from a nursing perspective, you have to let those feelings be present and have those feelings addressed. If someone’s angry about their care or their diagnosis or whatever, that’s going to be an important piece for the healthcare provider to know. If you try to change the subject to something else, you’ll probably just intensify that emotion anyway. The other thing you can do prior to an appointment, though, is agree with your loved one that you will talk about those feelings. So, you can address these things ahead of time with the person you’re caring for, so that you’re both on the same page.
Guideposts.org: How can the caregiver delicately clear up miscommunications that may occur between the loved one and the medical team?
NA: That’s a tough situation because you don’t want to say something like, “No, you’re wrong about that.” Then the person feels diminished in front of the provider. But it happens all the time. You can gently ask your family member a question like, “Well, what about the other day when this happened?” That might elicit more information so that the physician is able to get an idea about the way they initially answered and that it wasn’t accurate. You don’t want to set up an adversarial relationship between you and the person that you’re caring for. You want them to feel supported. It’s a very fine line, but I think it can be done.
Guideposts.org: How can family caregivers learn more about what independent patient care advocates do?
DD: There are two websites that I would direct folks to. The first is the Alliance of Professional Health Advocates. There are great resources on that website and there is also a directory of patient advocates throughout the United States and Canada, and most of us are board certified patient advocates. The second website is Greater National Advocates. It has fantastic resources and it also has the national directory of professional advocates. These are great ways to learn about how you can loop an advocate in when it’s time—when you’ve gone as far as you can as a family caregiver and you recognize that you need some help.