Caregiving: 10 Tips to Advocate for Good Care in an Imperfect and Sometimes Insensitive Care “System”
By Pamela D. Wilson, CSA, MS, BS/BA, CG
Advocating for Care in an Imperfect Care System
Advocating for care in an imperfect care system is a learned skill. Whatever happened to good bedside manner? To the sensitivity of frustrating care situations? To the dignity that our elders should receive but do not? To common sense that might be expected of caregivers in the care industries? To politeness? To follow through and attention to identified concerns? The importance of advocating for care is even more important today.
In my twenty years of work as an advocate, daily interactions occur that continue to disappoint me related to the care of clients. I wish I could say that I am surprised by the “system” and the industries of medical care, health insurance, health care, and caregiving that fail to train their employees to provide good or standard care. Clearly, there is a gap between my expectation of good care and the provision of care at all. This gap is the reason that everyone involved in caregiving situations must learn to advocate for care. America’s healthcare system impacts care for aging adults.
Care Systems are Insensitive to the Needs of Aging Adults
Caregivers and families with whom I work, experience shock at the insensitivity of the “system.” Those who have been caregivers for some time, as well as I, realize the system is imperfect at best. The increasing number of individuals needing care have strained a system that struggles to find willing and able bodies to fill positions. Providers in the care industries, at least those who are honest, admit that hiring, training and retaining staff qualified to support care recipients is and will continue to be a daily and ongoing struggle.
Aging Adults Can Be Viewed as Problem Patients
And then we have the other issue of individuals and families in denial about care, those who refuse care, those who are in constant disagreement about steps to be taken to provide care for loved ones, and those who have lost patience with the system and are viewed as “problems” to providers in the system.
You might be surprised to know that information about interactions with doctors is placed in your medical chart. Each time you refuse to accept active, refuse to take a medication or follow treatment recommendations, this information is documented.
This information may affect your treatment possibilities in the future. Patients who refuse care are called “non-compliant” by the medical system. Being recognized as a “non-compliant” patient does not reflect positively on the patient who is then viewed as a problem patient.
How to Advocate for Care In An Imperfect Care System
I wish I could predict that the situation with the care system will improve over time. This is unlikely due to the growth of the aging population. The responsibility to learn to advocate is a family caregiving issue. Both aging adults and caregivers must learn to work together with healthcare providers and to speak up.
Much like the shortage of good teachers, there is a severe shortage of caring and qualified individuals in the caring and health care professions. How can caregivers and care recipients rise above the frustrations of receiving poor care and advocate for good or better care?
1 Maintain Your Composure
At times the frustration can be overwhelming. There are no good answers, you feel like you’re getting the “run-a-round”, care is poor, no one is willing to be accountable for anything. This may be the new reality of the health care system. Concerns are usually better received when the messenger (you in this case) are emotionally composed, factual and polite. No one wants to be at the end of screaming, yelling, or extreme expressions of anger or frustration.
2 State the Facts
The more factual you can be in providing information to support concern the easier it is for the concern to be investigated and addressed. Vague information is rarely helpful and may result in the return of information that is inaccurate.
3 Establish Relationships & Become Likeable
Providers want to have positive relationships with caregivers and care recipients. Be polite to reception staff, to those with whom you speak on the phone, and to those who offer assistance. Ask for help rather than demand help. Use humor when at all possible People help people who are likable.
4 Be Prompt, Organized, and Make Lists
Physicians have limited time at medical appointments. The “15-minutes” that insurance provides is not a social occasion but an occasion for you to address 1-3 specific concerns. Be prompt for the appointment and give the physician a list of concerns with information that substantiates the concerns so that they may be appropriately addressed. Have a list of questions prepared in advance so that you do not leave the appointment feeling that your concerns were not addressed.
5 Understand Who Can Be Helpful – Find the Go to Person
Not everyone has the ability to address your concerns. Complaining to a receptionist who has no knowledge or ability to change your situation will not achieve the result you desire. When questions or concerns exist, ask “who” you should be asking for assistance so that you receive the information and responses that you expect.
6 Make Suggestions in a Positive Manner
None of us wants to be told what to do. That being said you know more about your situation or your loved one than anyone else. When making a suggestion explain the WHY so that the person receiving the suggestion fully understands and is willing to work with the request.
For example, my mom (who is nearly blind) will physically resist anyone who touches her because she cannot see what is being attempted or know if the person is harmful. Anyone approaching her should introduce him or herself and explain the action they are taking. She will then be able to ask questions and will cooperate.
7 Show Up
Provide accurate information about your loved one and be proactive so that others are able to help. The more actively you participate, the better the result.
8 Ask Good Questions
The quality of care you or a loved one receives significantly depends on the quality of questions you ask. If you don’t know what to ask, retain a care advocate to ask questions for you. Frequently errors and misunderstandings occur because providers assume you know information that you do not. Not asking good questions can result in unintended consequences and poor care.
9 Acknowledge That Mistakes Do Happen
No one is perfect. People make mistakes. Accept apologies graciously and ask for ways to not have the error repeated. Put processes and procedures in place to address ongoing concerns so that you do not appear to be the “complainer” who appears and has staff running the other direction. Make apologies when you make a mistake or error. Being gracious is a two-way street.
10 Don’t Accept Less Than Good Care and Don’t Take No for an Answer
Physicians tell me that my client is old as if my client doesn’t deserve proactive and good care. Many physicians are insensitive, they fail to see reasons for care declines, they lump clients into the same categories. Care staff in communities become “facilitized” and treat everyone the same. They get into ruts like robots and perform the same routines day in and day out. Because of this they become desensitized to changes in health or condition
Listen and then express your concerns and the reasons for your concerns. Be persistent in asking for an investigation of the causes of conditions. Don’t let anyone tell you that your concern is not valid. Don’t accept less than good care. And if you struggle in this area, hire a care advocate to speak up for you or your loved one.