Conclusion of interview with home healthcare expert Steve Olian, MBA:
Larry Berkelhammer: LB Steve Olian: SO
LB: What about the situation where the caregiver may actually be doing a really good job, but for some reason the patient just doesn’t like that caregiver and there’s a personality clash. This person may be an outstanding caregiver. What do you do in that situation?
SO: I think the illness dictates the kind of requirements in the patient/caregiver relationship. There’s a huge difference, obviously, between someone who is recovering from a complex surgery, to someone in the advanced stages of Alzheimer’s. There may come a time when the patient is simply not able to be cared for at home. When there is no one who can work successfully with that patient, then the caregiver manager needs to consider that the time has come to think of another solution to the problem, such as a nursing home.
It’s a wrenching decision and extremely difficult if you’re talking about a spouse, who has already committed themselves to being there for the partner forever. This move is perhaps the most difficult of all. Then, of course, at the far end of this, at the terminal end of people’s lives, there’s Hospice, and there, too, the primary caregiver manager has to decide if they want to continue having Hospice in the home. This is obviously a decision reached in conjunction with the patient, or it may be something that is handled through a hospital or convalescent facility.
LB: What if you’re the primary caregiver manager and you’re not sure. Also, there must be a lot of situations, especially with an elderly couple where the well person isn’t equipped to make good decisions. Are there advocates that you can hire to come in and actually assist you in making decisions?
SO: The only agency I know that can handle that is the nonprofit Institute on Aging, which provides services to individuals at all levels. They may be able to come in and do that kind of an assessment. The patient’s physician can recommend professional people. This is also a very difficult process to go through.
LB: What about a retired hospital RN to advocate? What about hiring just one RN to be the one to oversee all these people coming in to care for the patient?
SO: You could probably do that and it would be a fine idea, but I personally have never had any experience with that and don’t know of anyone who has the capability of doing that.
LB: Steve, here’s a different sort of question for you. Over 90,000 people die in the hospital every year due to medical mistakes and several hundred thousand die from hospital acquired infections every year. What about the idea of having an advocate in the hospital, like you’d have an advocate at home. Are there people available to do that?
SO: Every major hospital has a system where each patient is assigned a patient advocate, but it’s important to know that those advocates are employed by the hospital. It’s important to realize that whether a disabled family member goes to a physician’s office, a hospital, or a convalescent facility, someone needs to be there from the family, who knows them, loves them, who can be there as their advocate as a lay person for that patient. This is even more important if the patient isn’t well enough to do that for him or herself. And I can’t emphasize enough how important it is for the primary advocate for that patient to be there to oversee what is going on. They have a lot more control when the patient is at home than when the patient is in the hospital or convalescent facility. But you still have to be there, even when the patient is at home.
LB: Because there are things being done to the hospitalized patient by many different individuals 24/7, I would imagine someone who is not an RN would not pick up on all the mistakes. Are there private-duty RNs available to do this?
SO: You can hire private nurses to sit in the patient’s room with them 24/7, but we’re talking about big money. This is a possibility, but I’m almost certain that no insurance policy would cover it.
LB: As a primary caregiver manager, how has it been for you as the spouse of someone who has had multiple sclerosis for a very long time?
SO: My wife has had progressive MS for over 25 years, 30 since the diagnosis, about 25 since the effects of it have really been seen, but we’ve been fortunate that it’s been a long, slow process and she’s been able to maintain a good deal of her functionality through all this. Even though she’s now in a wheelchair, she’s able to exercise and leave the house and go out and do a lot of things. We’re lucky to have a home that is large enough for us to have our own personal, live-in part time caregiver to assist me. At times we’ve had to call people from the outside for specific duties or when our live-in caregiver is on vacation. I have, over the years, used 2 or 3 different agencies, with varying results, so it’s pretty inconsistent. Because we call agencies and private-duty caregivers infrequently, we don’t usually get the same people back. We also have a nonprofit agency in our city called Marin Center for Independent Living, which offers a registry of people who can do certain kinds of homecare work, everything from driving to convalescent care. The registry has been useful and a kind of pre-selection process if we’re looking for individuals to work for us.
LB: Steve, thank you so much for agreeing to this interview.