Navigating the Health Care System

Resources to Help You Be a Better Caregiver

By Carolyn M. Clancy, M.D.

July 5, 2011

Many of us are—or will become—a caregiver to a parent, spouse, child, or other loved one.

When that happens, you will need to find out a lot about a disease or condition, ask good questions about treatment options, and make the best decisions you can. But don't be surprised if, like me, you also learn some things you wished you had known earlier.

For the past few years, I was an intermittent "virtual" caregiver to my 82-year-old father, Patrick, who died last fall. Even though he lived 450 miles away, we kept in close touch with regular phone calls and visits.

Like many people his age, my father had several chronic illnesses and previous surgeries. These included lung disease, early Alzheimer's disease, heart problems, and a knee replacement. He took 18 different medicines and was on oxygen at home during his last year of life. He was extremely fortunate to have a terrific wife who helped him manage his medications and appointments—and was essential to his enjoying his life beyond dealing with health issues.

One of challenges my family faced was learning how to manage things that became part of my father's daily routine, like his oxygen machine. Other caregivers may have challenges in organizing weekly medicines or arranging transportation to and from various medical appointments. These relatively simple tasks can quickly become more complex when you are caring for a loved one with several ongoing medical needs.

There are resources that help caregivers meet some of these challenges. But finding help can take time and effort at a time when you already have a lot on your plate. Local connections—your friends, church, or workplace—are an important place to look for help.

In our situation, the visiting nurses and aides were very helpful to my father and stepmother. This was especially true after he came home after a hospital stay. Your local Visiting Nurse Association may be a good place to start if you need nursing help in your home.

Another challenge in my father's care was more serious, but all too common. On one occasion, my father needed to be re-admitted to the hospital because of a miscommunication about his blood thinner drug. Instead of taking a 2 milligram dose of his blood thinner, he was taking 2 pills that were 2 milligrams each, or double the correct dose.

Readers of this column know that my agency, the Agency for Healthcare Research and Quality (AHRQ), has funded many projects to identify and prevent medical errors, including taking blood thinner medications safely. We have developed a video and an easy-to-read brochure, which are available in English and Spanish.

In my father's case, the miscommunication that caused his overdose might have been prevented if his nurse had asked my stepmother to repeat the blood thinner instructions back to her. This type of feedback can be as simple having the nurse say, "Tell me what you heard. Say it back to me, so I know we're on the same page."

One project that AHRQ funded and is being used by hospitals across the United States does just that. Project RED consists of an 11-step checklist, including a phone call from a clinician a day or two after a patient goes home from the hospital to find out if the patient or the caregiver has any questions about medicines. In a study at Boston University Medical Center , patients who took part in the Project RED education had 30 percent fewer hospital re-admissions than patients who did not.

A guide developed as part of Project RED helps patients when they leave the hospital. It has space for patients to list their medications, follow-up appointments, and phone numbers for who to call if they have questions once they get home.

My recent experiences have truly strengthened my belief that patients and their caregivers should ask questions about their care. Many doctors—myself included—were trained to think that a "good patient" is one who doesn't complain or ask too many questions. In fact, people who ask questions and get answers they understand are more likely to fare better overall.

I'm Dr. Carolyn Clancy, and that's my advice on how to navigate the health care system.

Resources

Caregivers' Resources: U.S.A.gov
Find a nursing home, assisted living or hospice services; check eligibility for benefits; get resources for long-distance caregiving; review legal issues; and find support for caregivers.
http://www.usa.gov/Citizen/Topics/Health/caregivers.shtml

Visiting Nurse Associations of America
http://www.vnaa.org/vnaa/siteshelltemplates/homepage_navigate.htm

Boston University Medical Center
Project Red: Re-Engineered Discharge: A Randomized Controlled Trial at Boston Medical Center
http://www.bu.edu/fammed/projectred/index.html

Agency for Healthcare Research and Quality

Blood Thinner Pills: Your Guide to Using Them Safely
http://www.ahrq.gov/consumer/btpills.htm

Educating Patients Before They Leave the Hospital Reduces Readmissions, Emergency Department Visits and Saves Money
http://www.ahrq.gov/news/press/pr2009/redpr.htm

Taking Care of Myself: A Guide For When I Leave the Hospital
http://www.ahrq.gov/qual/goinghomeguide.htm

Questions are the Answer: Get Involved With Your Health Care
http://www.ahrq.gov/questionsaretheanswer/

Current as of July 2011

Internet Citation:

Resources to Help You Be a Better Caregiver. Navigating the Health Care System: Advice Columns from Dr. Carolyn Clancy, July 5, 2011. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/consumer/cc/cc070511.htm