Rosalyn Carter said it best: "There are only four kinds of people in the world -- those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers."
Theoretically, a patient's primary care physician, supported by specialists, is the centerpiece and coordinator of health care. Unfortunately, the system doesn't always work. The American Medical Association and federal government acknowledge there are gaps from lack of coordinated care. Donald Berwick, M.D., former administrator, Centers for Medicare & Medicaid Services, has long advocated patient-centered care and the coordination of services to provide better quality and avoid duplication and waste. He lists the lack of care coordination as one of the top reasons for health care waste in this country (Berwick, 2004).
Being present and attentive is the most significant thing you can do to drive the care of your loved one. Your presence sets the tone for the care relationship you will develop during your loved one's hospital stay. You do not need medical knowledge to make a difference. When you are in doubt about anything, ask questions. In any given week, numerous providers have the potential to write orders regarding a patient depending on how many specialists are consulted. Add to that number new residents and fellows who start rotations every month or two.
At every juncture along the health care journey, providers must communicate the plan of care to one another. With the number of people involved, you can imagine the opportunity for errors. In fact, the Joint Commission reports that 70 percent of errors reported to the commission are the result of poor communication, and many errors go unreported. In most cases, especially complicated hospital admissions, only one person knows the patient's whole story, and that person is usually a family member. The actual patient is compromised by illness and will miss or misunderstand information.
When a patient transfers between care facilities, a family member usually provides the patient's medical history to the new facility. Although a verbal report is typically shared between facilities, providers choose to share only certain highlights to make the report succinct. Of course medical records are sent to the receiving facility, but they usually consist of volumes of information irrelevant to the receiving providers' plan of care. And not even the best doctor can summarize a complicated two-month hospital stay involving 15 specialties in two pages. Families often keep track of their loved one's medical journey in a notebook or binder because they find themselves as the true coordinator of care. Undoubtedly, your loved one will receive better care if someone is there to help coordinate the care.
Coordinating Your Home Support Team
Of course, families are diverse, with each member having unique strengths as well as limitations. When a loved one is sick, capitalize on each person's strengths. Everyone can be involved in some way, whether through direct care, dealing with insurance issues, cooking, running errands, doing laundry, or providing financial assistance. It is all equally important. Every job is vital to the success of the plan. No job or contribution is too small or insignificant. Not everybody in every family is suited or comfortable providing direct care. That's okay because direct care duties are not the ones that typically cause caregivers to burn out. The combination of other duties -- such as food shopping, cooking, laundry, cleaning the house, and ordering supplies and medications -- often causes the burnout.
A study by the MetLife Mature Market Institute -- devoted to research on aging, longevity, and the mature market -- revealed interesting findings:
• The percentage of adult children providing personal care and/or financial assistance to a parent has more than tripled over the past fifteen years. Currently, a quarter of adult children, mainly baby boomers, provide these types of care to a parent.
• For a woman over 50, the total of wages lost due to leaving the labor force early because of caregiving responsibilities equals $142,693. The estimated impact of caregiving on lost Social Security benefits is $131,351. A very conservative estimate of impact on the woman's pension is $50,000. Thus, the total cost impact of caregiving, on a female adult child who provides care to a parent, in terms of lost wages and Social Security benefits, is $324,044.
• For a man over 50, the total of wages lost due to leaving the labor force early because of caregiving responsibilities is $89,107. The estimated impact of caregiving on lost Social Security benefits is $144,609. Adding $50,000, a conservative estimate of the impact on the man's pension, the total impact equals $283,716 for a man.
• On average, then, the total average cost to a male or female, age 50+, who cares for a parent is $303,880. Children provide financial assistance to their parents, regardless of the children's gender or work status or the gender of the parents. However, men are more likely to provide financial assistance than basic care.
When someone is caring for a loved one, he or she doesn't necessarily think about future lost Social Security benefits or pension dollars. Unfortunately, this is the reality many caregivers face, and it will only become worse as baby boomers age and need care. Fortunately, many states are beginning to pay family members to provide care to elders. Eventually, this will become the norm, as boomers will exceed the number of available caregiving options. Families will become the solution to the pending caregiving quandary as the aging baby boomers hit this nation's health care system. The MetLife study reinforces the overall financial toll that caregiving can take on individuals and families.
ACTION STEPS FOR YOUR FAMILY
1. BE PROACTIVE: FORMULATE A PLAN
Regardless of who is in the hospital, reach out to extended family and friends for help. This is no time to be shy. Contrary to what you might think, family members and friends are usually eager to help and often just need clear direction. Be as clear as possible about what you need. Do you need someone to grocery shop? Take out your garbage? Pick up medication or supplies? Babysit? Sit with a family member when everyone else is at work? Let people know exactly what you need.
2. CREATE A SCHEDULE FOR VISITS
Make it your goal to have someone present with your loved one for as many hours as possible. Since the goal is for your loved one to recover, he or she doesn't have to engage in conversation with every visitor. Just by being there, a visitor can reduce anxiety and promote rest for the patient. For an extended stay, give your loved one a pocket calendar that shows the days and times visitors are scheduled. Provide telephone numbers in case the patient wants to ask someone to bring something.
3. CARE FOR YOURSELF
If you happen to be the one visiting on many or most days, prepare for the long stay. Bring fresh clothes and hygiene products with you. Always have enough of your own medications. Make the effort to eat well, exercise, and take time for yourself. Locate the chapel or meditation room in the hospital. You will find the time alone, spent in prayer or meditation, to be crucial in maintaining your emotional and physical health.
4. BE DILIGENT ABOUT KEEPING GOOD RECORDS
Health care is a maze, a world with its own set of rules and vocabulary. It is unrealistic to think you can navigate the maze without a map of where you have been and where you are going. Do not rely on your memory. When you keep good records, you'll have the information you need at your fingertips; you won't have to rely on hospital systems. You'll be prepared to fill in gaps in communication and coordination of care for your loved one.
Using a binder to organize test results is an easy to follow approach for record keeping. Keep your binder with you at all times. You will see multiple specialists and receive results along the way. Keep these documents with you and refer to them when needed. You will be both surprised and appalled at how many times you are the only one with the correct information. Most physicians, especially ones trying to manage the care between multiple providers, will embrace your binder. It will ultimately become a resource that makes your loved one's healthcare journey a bit safer and more seamless.
Berwick, D. (2004). Escape fire: Designs for the future of health care. San Francisco: Jossey-Bass.
Dr. Ruth Tarantine is currently the Director of Healthcare for a higher education online service provider who partners with universities around the world to help them expand access to their educational programs. With over 25 years of nursing experience, she holds a master's degree in nursing from the University of Pittsburgh, and a doctorate of nursing practice from Chatham University. Tarantine is also co-owner of Eldercare Navigators, where she assists seniors and chronically ill individuals with navigating the healthcare system.
As a way to help patients and their loved ones navigate the U.S. healthcare system, Ruth Tarantine DNP, RN wrote the book, Against All Odds: How to Move from Provider-Centered Care to Patient-Centered Care (Amazon, Kindle, and Barnes & Noble online). In her new book, Tarantine chronicles her own struggles and challenges with the U.S. health system during her quest to provide her elderly mother with an acceptable standard of care. Connect with Tarantine on: Healthcareagainstallodds.com or Facebook or Twitter.
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