A friend is about to have big surgery that will require a long recovery at home. She and her husband have no idea what to do.
Another friend is the primary caregiver of a couple in their 90s—the husband has dementia and his wife had a stroke. The caregiver has no idea what to do.
Another friend learns on a Friday that her mother will be discharged from the hospital on Tuesday. Her mother has limited use of her legs (everyone hopes temporarily) and needs extensive rehab and personal care. The daughter has no idea what to do.
Organizing health care in a single setting, say a hospital or a doctor’s office, is complicated. Coordinating medical treatment that is provided by multiple doctors, imaging centers, and labs is even tougher. Adding a range of social supports on top of it all is nearly impossible.
For instance, once my friend with the big surgery is discharged to home, she will need: a visiting nurse, a home care aide, a special diet, physical therapy, occupational therapy, a system to track her multiple medications, and transportation to follow-up care.
And that is just for the diagnosis that led to the surgery. She also must coordinate the complex ongoing treatment she’ll need with care she gets from other specialists for other conditions. Just getting those docs to talk to one another will be a minor miracle. And while they all are using electronic medical records, there is a good chance that one specialist’s EMR can’t communicate with her other’s.
What if she is permanently unable to care for herself? Does she try to stay at home? Does she hire a home health aide? Live-in or shift work? Does she move to independent living? Or assisted living? Or a continuing care community? If so, fee-for-service or life care contract? The choices, and decisions, never seem to end.
If you think she is unusual, she is not. More than two of every three people over age 65 have at least two chronic conditions, and one-third have at least four. By age 85, more than half have at least four chronic conditions. Half of all Americans 65 and older will need a high level of personal assistance before they die, and they’ll need it for an average of two years.
Families are trying to organize all this while under enormous stress—it often follows some acute medical episode such as a fall, or it comes in the wake of a frightening diagnosis. Everyone is scared and confused.
And decisions often must happen fast. The women who got four days notice that her mom was going to be discharged was incredibility fortunate. She might have gotten four hours. That once happened to me.
Then there is the jargon—both medical and social. Doctors, therapists, and social workers speak in highly technical, and completely different, shorthand. They often don’t understand one another. And many struggle to communicate with their patients or clients.
And there is the absence of anyone taking the lead to manage all this care. Medicine these days is full of talk about quarterbacks and teams. But the execution is more like the Washington Redskins than the New England Patriots. Often, the only one to coordinate all this is the family caregiver.
How can families manage all this? Here are a few suggestions:
- First, remember that organizing care ultimately is up to the patient and her family. There are tools to help, but in the end, the decisions are yours.
- Get the family on the same page. Tell your doctors about your goals. Don’t be afraid to speak up.
- Designate one family member to take the lead. It may be the patient herself. But if not, someone has to be in charge. You can’t have siblings arguing with one another over care choices.
- Make sure the designated family member has a medical power of attorney (sometimes called a health care proxy). Without it, providers can ignore his requests.
- Hospitals or health systems may have navigators for some patients, such as those being treated for cancer or who have had heart or orthopedic surgery. Ask if they are available. And use them. They can be very helpful.
- Don’t count on hospital or nursing home discharge planners to provide you with complete support. They are overworked and allowed to provide only limited information.
- Medicare now pays physicians for limited care management services. But relatively few doctors have embraced the role. Ask your primary care doc about this service.
- If you can afford it, think about hiring a care manager or care consultant. They not only can help you understand what care you’ll need, but they can identify the best providers. Unlike free websites that often steer consumers to providers that pay for the referrals, care managers work for you.
Organizing complex care is tough stuff. And poorly managed care can lead to needless emergency room visits or hospital stays. Worse, it can kill you. It isn’t easy to get control of all this care. But it is necessary.