Connecting the Dots - What Care Coordination is All About

OK, so you now understand your parent's doctors' treatment plans (Step 1) and you have acquired a certain proficiency in gathering medical information (Step 2) and non-medical information (Step 3) specific to your personal situation. The next step is pulling everything together - multiple doctor's appointments, tests, procedures, medical information, home care services, medication management, devices, and as many other services as your aging parent requires to be safe at home, wherever home is.

Step 4: Linking medical and non-medical needs and creating an active problem list

Medical care is fragmented and medical service providers do not always have the time or ability to communicate with each other about your parent's care. You will probably see any number of health providers for different reasons. Primary care physicians, specialists, nurse practitioners, home care providers, pharmacists, and others are all looking at different aspects of the illness.

Coordinating all your parent's multiple doctor visits, tests, procedures, medical information, home care and other services is a daunting task, and one of the most important in keeping your parent safe. If you and your family can possibly afford it, hiring a personal, professional care manager is an investment that will save you much time and stress - and possibly guide you to resources and benefits you may not know about.

Few doctor's offices are set up to perform care coordination services that link activities outside of the office setting, which impacts your parents well-being in their home. Many doctor's offices do coordinate medical care for their own services and try to integrate information from other healthcare providers. However, the link between the physician's office and other providers is seldom routinely coordinated with an electronic record. And at best, this will deal only with medical needs.

Some examples of when you will need to link medical and non-medical services include:

• When your parent is being discharged from the hospital.
• When your parent has a chronic illness and you want to make the most of healthcare finances, benefits, support groups, and volunteer services.
• When your parent may need to move in to an assisted living facility or a nursing home.
• When you are helping your parent relocate from one state to another.

Your Active Problem List

The best thing you can do is to try to come up with a problem list and then solve problems, rather than being overwhelmed by all of the various pieces in the eldercare universe. There really aren't as many issues as it seems once you can get your hands around your own situation. What we think is complex and unfamiliar is because we haven't been there before. So for example, if your mother is becoming frail, and the question is, can she continue to drive or can she continue to take care of the home herself, then both the medical information and the non-medical information that you need is finite.

The best way we've been able to help adult children with family caregiving as well as seniors who are taking care of a spouse is to look first at the physical problems, then at the practical problems, and then at the emotional stress that goes along with it. If you can take care of the aging parent's physical problems by understanding their doctors, and then the practical problems of safety at home and coordinating care - of linking services - then the emotional stress, the fear, the confusion, the sense of being overwhelmed lessens.

Coordinating your parent's care competently will be the foundation of gaining control over his or her well-being as well as your own time and energy. A well-trained professional care manager will be familiar with the complex but often predictable obstacles faced in the difficult stages of serious chronic illness - bringing together all the tasks needed for your parent's comfort, such as grocery shopping, lawyer appointments, medical scheduling, and more.

Here are some things to consider if you take on the care-managing role.

      Believe in your own observations and expertise. As you become involved with coordinating your parent's needs, you and your parent can learn the details of both the medical and non-medical care involved. You will know every test that has been done, and every treatment being undergone. Even if another relative or friend takes on part of the job - taking your parent to her doctor's visits, cooking the family meals - you will know which person is doing which job at what time, and will get reports on any activities with which you are not directly involved. Once you have a plan, the family unit is uniquely suited to coordinating your parent's care - provided that you all share information.

     Stay organized. Someone in the family should keep a record of all the services, tests, procedures, examinations, medications, and questions that need to be answered in order to coordinate care effectively. That person should keep an appointment book with enough space to write down essential information, such as:

• The names and contact information of each of your parent's doctors and other service providers and a list of the problems each provider is addressing.
• Any tests, treatments, and procedures along with their dates.
• A medication list.
• Notes of past appointments with other providers specifically focused on the recommendations of each of these providers about treatments and follow-up.
• A schedule with future appointments and the reasons for them.

Armed with this information, you should be able to tell each provider about all the medical care your parent is receiving from other physicians. Supply all the details - for example, that your mother saw her heart doctor last week and the doctor increased her medication because she was having breathing problems. It's especially important to update all providers on any conditions that they may not be aware of - and it's all information already in your notes.

If you're a long-distance family caregiver or if you are unable to accompany your parents to their medical appointments, communicate with the physician's office as best you can. If it's possible, have a friend or relative who lives closer to your parent go along on doctor visits.

     Keep everyone talking. In addition to your notes, make sure that copies of medical records, as well as any tests, treatments, or services, are forwarded to other providers who can benefit from the information you are coordinating. Keep all the providers informed about each other and be sure to ask each provider how you can best help keep medical tests and reports current. If you can identify a contact person at each provider's office you will be able to follow up to make sure that everyone has all the important information.

In addition to sending and receiving information, getting to know the office staff in the doctors' offices can help you with planning and scheduling appointments. Often doctors' assistants keep cancellation lists to get patients in to see the doctor as soon as possible. If you take the time to talk with them, they may think of you first when the needs arise.

With good and well-coordinated information, caregivers and patients are better adapted and more in control of meeting the daily needs of living with an illness. The time spent finding the information, or the money spent hiring a care manager to help you, will save time later in the process - time that can be used to nurture both your parent and yourself and to enrich your relationship by creating room to express the intimacy between you.

That's the one thing no one else can do.

In our next blog, we'll talk about "guidance support," which is a specific approach to problem solving that helps you learn how to solve problems yourself.

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About the Author

Dan Tobin

Dan Tobin, M.D., is an adjunct assistant professor of psychiatry and health psychology at Dartmouth Medical School, as well as the founder and CEO of Care Support of America.

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