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

caregiver supportAdvocating for care with the healthcare system is mandatory. Healthcare providers are busy and the squeaky wheel gets attention. If you hesitate to speak up you may become one of the ignored.

Whatever happened to appropriate 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?

In my twenty years of work as an advocate, daily interactions occur that continue to disappoint me related to the care of my 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.geriatric health and care management

The Healthcare System is Insensitive to Older 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.

Patients Who Refuse Care Can Be Viewed as Problems 

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. Some adults are viewed as “difficult patients.”

The Shortage of Healthcare Providers and Time Pressure Requires Self-Advocacy If You Want Better Than Average Care

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? America’s healthcare system impacts care for aging adults. 

Below are 10 Tips for Advocating for Better Than Average Care in an Insensitive Healthcare System

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 the recipient 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 a 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 Likable

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.

Getting the results you want from a 5-minute medical appointment can be challenging. Be organized. 

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 and Be Prepared

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 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 Poor Care – The Goal is Better than Average Care

Physicians tell me that my clients are 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.

© 2019 Pamela D. Wilson, All Rights Reserved.

Pamela D. Wilson, MS, BS/BA, CG, CSA, is a national caregiving thought leader, caregiving expert, advocate, and speaker who solves caregiving problems. Online support and programs are offered to caregivers seeking support and advice for the care of aging parents, spouses, and other family members. Pamela supports adults, age 50+, with positive aging advice and online programs to advance health literacy and self-advocacy. Collaboration with professionals in the specialty areas of estate planning, elder law, and probate, financial planning, and healthcare raises awareness of and sensitivity to stressful family caregiving and healthcare issues.

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