Why The Healthcare System Fails Caregivers

There are many reasons why the healthcare system fails caregivers and aging adults. The healthcare system has recently become focused on the concept of healthcare consumerism—a medical speak term—that places personal choice and responsibility on consumers or patients to pay for and manage their health.

Why the Healthcare System Fails to Support Family Caregivers

In this article, video, and through her work with family caregivers, groups, and corporations, Pamela D Wilson shares insights and opportunities to close the gaps that exist between consumer, caregiver, and aging adult participation making good decisions about health and well-being.

Watch More Videos About Caregiving and Aging on Pamela’s YouTube Channel

Gaps in healthcare consumerism relate to the levels of health literacy possessed by consumers and the healthcare system that doesn’t have to operate in a competitively priced consumer market. On the surface, healthcare consumerism may seem practical and logical.

Consumers make daily choices about purchasing goods and services. Choices about health and medical care decisions can be highly complex versus buying laundry detergent brands or selecting a pair of sneakers.

Healthcare is not a competitive market where consumers or patients can affect supply, demand, or the cost of goods. The government, private insurers, hospitals, and other public and private entities—each with competing policies, interests, and regulations—control costs in the healthcare market.

The healthcare system is a system that consumers participate in; however, there are many restrictions or parameters for receiving care. Appealing a health insurance decline can take months to resolve and may still not arrive at a satisfactory resolution for the patient. Another reason why the healthcare system fails consumers.

What is Healthcare Consumerism?

Healthcare consumerism seeks to place responsibility on consumers who cannot make informed medical care decisions independently without access to medical expertise, wisdom, and perspective of judgment. Reliance on healthcare providers for medical decision-making support is challenging when consumers lack trust in the system.

healthcare consumerismHealthcare providers offer information with the expectation that consumers and patients will be interested and act. Providing access to information assumes that high levels of health literacy exist across all populations, races, and cultures, in addition to an interest in seeking information for use.

When a lack of understanding of future consequences exists about any subject, the likelihood that consumers will seek information and act is low. Daily life poses many competing priorities and the ones that seem most pressing command attention. Health and well-being are unimportant until health problems arise or a family member becomes a caregiver.

Healthcare Providers Ignore Family Caregivers

Knowledge gaps about health and well-being include decision-making, trust, health literacy, information-seeking, and taking action. These educational gaps and many others contribute to the failure of the United States healthcare system to provide high-quality, managed healthcare at a reasonable cost.

Many adults view doctor-patient relationships as a one-directional system of care. This means that patients see the doctor and receive information but may not be proactive in asking questions. Research confirms that while the caregivers know more about the person who receives care, doctors and other healthcare professionals rarely take the time to consult caregivers.

Information that caregivers possess about the daily habits and needs of loved ones can contribute to better medical care if family caregivers were consulted. To ensure better care family caregivers must learn advocacy skills and develop relationships with healthcare providers instead of feeling invisible

Challenges Faced by Consumers Mean Fewer Participate in Medical Care

These issues faced by caregivers and aging adults pose far-reaching consequences for improvements in interactions with the healthcare system. When consumers feel intimidated about dealing with doctors and the healthcare system they don’t go to the doctor which can result in more health problems.

  • The average consumer has low levels of health literacy because educational institutions, beginning with grade school, fail to offer education about this fundamental part of self-care and life management.
  • Family members thrust into the role of caregivers lack knowledge and experience. The majority of caregivers and the persons they care about are uninformed about available services. Most fail to discuss plans and expectations for aging parents or spouses’ care needs and become exhausted and burned out.
  • Aging adults with health concerns who are low income are more vulnerable. Many cannot seek, interpret or evaluate information without family or other support.
  • Elders with memory loss who live alone or are isolated are at significant risk of being unable to advocate for their needs.
  • Health insurance is difficult to navigate. Most consumers lack an understanding of co-pays, deductibles, in-network providers, and online access.
  • Company-sponsored health insurance shielded consumers from healthcare premiums and costs, in a sense devaluing consumer participation in care that has no obvious financial cost.
  • Low-income individuals postpone medical care that can result in more severe health consequences.
  • Consumers without health insurance or a primary care doctor use the emergency room as the place for medical care, driving up healthcare costs for all consumers.

What do Healthcare Consumers Want?

what do healthcare consumers wantConsumers want access to healthcare at a reasonable cost and to be treated with dignity. Healthcare consumer understanding of caring fails caregivers and aging adults because the healthcare system expects consumers and patients to be interested in health and well-being.

While consumers rarely become engaged with medical care before a healthcare diagnosis, managing chronic disease requires the health literacy skills of judgment and decision-making in addition to other higher level skills. Healthcare consumer understanding of caring specifically for managing health is a significant gap.

The healthcare system is presently a provider of medical care only after a health diagnosis. Prevention is not rewarded as a billable health care expense for medical providers. The reward of revenue is for providing care and treatment for the sick.

If consumers can gain health literacy to recognize health prevention as an activity to help avoid sickness and chronic disease, patients may become more active participants within the healthcare system. The old method of seeing the doctor and following doctor’s orders without asking questions places consumers in a reactive versus proactive position.

Until consumers and patients take the reins to partner with healthcare providers to recognize the importance of health prevention, improve health literacy and gain wisdom, aging adults and caregivers will continue to be vulnerable participants within the medical system.

How Can Health Literacy Be Gained?

What is health literacy? Health literacy is the use of cognitive or mental skills combined with social skills for interactions with others that determine the motivation to seek, gather, understand, evaluate and use the information to promote and maintain health.

Aspects of health literacy concerning levels of skill vary. The ability to read and write is a primary learning skill that is important for gaining and increasing health literacy. Aging adults and caregivers experience constantly changing situations that require the ability to seek and apply new information to address unexpected circumstances.

The Impact of Caregiver Exhaustion on Health Literacy, Decision-Making, and Quality of Care

Caregivers who become mentally and physically overwhelmed or exhausted may have no interest or energy to seek new information that can prove valuable. Aging adults living alone without access to technology or those unable to initiate research may also find themselves at a dead-end for making progress.

Solutions result from engaging and taking action to manage daily activities and the health of aging parents, spouses, and loved ones. The ability to communicate and interact with others demonstrates a higher level of health literacy to gather information, identify preferences and manage life situations and health. Using judgment skills involves receiving and acting on research, data, and knowledge to manage chronic disease, daily care situations, and interactions with others in the family and the healthcare system.

Caregiver exhaustion or illness of the care recipient negatively impacts the ability to build or use health literacy skills. Caregivers may be unconvinced and hesitant about the benefit of making an effort to take on one more project due to having an already overloaded to-do list.

Coping with the day-to-day stresses of caregiving wears caregivers down cognitively, emotionally, and physically. The insight that caregivers lack is that exhaustion results in poor care for spouses and aging parents and prevents solutions that have the potential to improve health and care situations.

Why Interactions With Healthcare Providers Can Be Intimidating

why is healthcare intimidatingInteractions with healthcare providers can be intimidating because of medical terms and information that caregivers and aging adults may not understand. Medical appointments are time-limited and sometimes rushed. Unprepared adults and their caregivers may not feel that they received answers to their concerns or that the doctor was interested in helping.

Discussions about bloodwork readings of cholesterol or triglycerides or even blood pressure numbers may mean nothing to a patient without an explanation and the opportunity to ask questions. Informational materials provided by a doctor or nurse may offer statements or facts but not consequences that translate into meaningful information that consumers or patients find relevant to their situations.

For example, a decrease of risk from 10% to 5% may be understood numerically as a 5 point reduction but not related to a decrease by half or 50% to show the significance of preventative health actions.  Health literacy involves reasoning, thinking, and decision making and is affected by how information is presented and evaluated by an individual.

Poor bedside manner or a faulty interaction with a healthcare provider can harm the willingness of consumers or patients to return or participate in ongoing medical care. A lack of trust is cited by many consumers for the reason that participation in routine care does not occur.

Caregivers, Aging Adults, and Consumers Mistrust the Healthcare System

As can be seen with issues surrounding the response to recommendations by the government for consumer participation in COVID vaccinations, caregivers, some aging adults, and many consumers distrust the system. Finding reliable and trustworthy healthcare information is challenging when news and data offer conflicting opinions.

Consumers who distrust the healthcare system feel vulnerable. As a result, the safest option is to do nothing. A large number of consumers do not understand reasons to participate in preventative or regular medical care. For these consumers, the hospital emergency room becomes their medical provider.

Gaps Exist in Workplace Messaging and Support for Family Caregivers

Many workplaces offer healthcare benefits and wellness programs. Human resource managers struggle with improving the effectiveness and use of these programs. Employees may view incentives for participation as more beneficial to companies than themselves which results in low participation levels.

Success in communication from the healthcare system and workplaces depends on the message, how the message is presented, and most importantly the perception of consumers, employees, and family members. If and when educational systems commit to adding health and well-being information into course curriculums, the same messaging issues will apply.

Why do consumers purchase and use products and services they find beneficial but ignore and mistrust participation in the healthcare system?

The answer is simple. Consumers, caregivers, and aging adults are not interested or engaged because they don’t see the need or the benefit. Until healthcare systems, providers, corporations, and others find the right messaging to establish interest and trust, challenges to increase consumer participation before health issues occur will remain.

Truly it’s a sad state of affairs for consumers who could be healthier later in life if there was less government involvement and control of healthcare. The healthcare system fails consumers because of being financially incentivized to treat the sick, not educate about preventative health.

Making Sense of Healthcare for Caregivers and Aging Adults

Preventative actions have a significant effect on health and well-being. When consumers are not engaged or interested in fundamental aspects of health and well-being like nutrition, exercise, or self-care, these gaps can show up in middle-age or earlier as chronic diseases.

Education is primarily a state and local responsibility in the United States. Without recognition by consumers of the importance of health education, states will not consider bringing health education into school systems. Nor will the United States make progress toward why healthcare consumer understanding of caring fails caregivers and adults.

Changing the face of healthcare in the United States will take significant effort that will not show immediate rewards. Healthcare systems chase one process improvement after another. Without educating young consumers, who will grow to be the elderly population of the future, no nation in the world will make progress in reducing chronic disease, healthcare expenditures, or improving the future of healthcare for all.

Consumers and patients limited by the healthcare system for so long have more power than they realize to advocate for needs. Not asking questions or failing to speak up to gain healthcare literacy and learn about preventative actions is like Dorothy wearing the ruby red slippers in the Wizard of Oz, not realizing that she had the power to go home anytime,

Knowledge and Wisdom Offer Caregivers and Aging Adults Choice

caregiver knowledgeWhile asking for help can be viewed negatively by caregivers and aging adults who want to remain independent, seeking knowledge and wisdom offers caregivers and aging adults choice.

Knowledge gained by seeking information and participating in caregiver courses, support groups, or by consulting an eldercare expert can be the support that caregivers need to increase health literacy and feel confident in making good decisions for themselves, aging parents, spouses, or loved ones.

While the Internet offers a world of information, having information and knowing how to use it to one’s advantage, especially in the realm of caregiving, can be challenging. Consulting an expert can shortcut learning curves, improve decision-making, and support advocacy efforts in working with the healthcare system and providers.

There is much to be learned and gained that can result in positive steps to care for loved ones. These include:

  • Creating a care plan to help aging parents or a loved one stay at home
  • Maintaining or stabilizing health conditions to delay the need for more time-consuming or expensive care
  • Advocating with healthcare and other providers to get needed care
  • Identifying and planning for increasing costs of care
  • Understanding the importance of having a living will, an agent under a medical and financial power of attorney, and a will or trust to make sure an individual’s wishes are carried out
  • Preparing for what to do when or if financial resources run out and care is still needed
  • Managing family caregiving relationships between adult children, parents, and spouses

Caregivers and aging adults can build health literacy and knowledge to become more informed and make better decisions, transforming the role of caregiving into a position of advocacy and support for aging parents and loved ones.

The power exists to change the future of health and the healthcare system. Change begins when consumers take action one step at a time.

If your company, group, or organization is seeking a better way to communicate with employees, clients, or members, Pamela D Wilson can help. Learn more HERE. 

Family caregivers can learn more here about Pamela D Wilson’s online eldercare course Taking Care of Elderly Parents: Stay at Home and Beyond and Elder Care Consultations


® 2021, 2022 Pamela D Wilson, All Rights Reserved

About Pamela Wilson

PAMELA D. WILSON, MS, BS/BA, NCG, CSA helps caregivers and aging adults solve caregiving problems and manage caregiving needs through online programs, live support groups, and an extensive caregiving library that includes articles, podcasts, videos, and webinars.

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