Why The Healthcare System Fails Caregivers and the Elderly

There are many reasons why the healthcare system fails caregivers and aging adults. Healthcare consumerism—a medical speak term—places personal choice and responsibility on consumers or patients to pay for and manage their health. Yet the U.S. healthcare system controls access, choice, and cost.

Why the Healthcare System Fails to Support Family Caregivers

Gaps exist in health and financial literacy. The healthcare system doesn’t operate in a competitively priced consumer market. On the surface, the idea of healthcare consumerism may seem practical and logical.

Consumerism means making daily choices about what to purchase. Choices about health and medical care decisions can be highly complex. Much different from buying laundry detergent or a pair of sneakers.

Healthcare fails caregivers and older adults because it is not a competitive market where consumers or patients can affect supply, demand, or the cost of goods. If consumers truly had this choice, healthcare in the United States might become more affordable.

The government, health and pharmaceutical lobbies, private insurers, hospitals, and other public and private entities—each with competing policies, interests, and regulations—control costs in the healthcare market. As a result, the patient experience of healthcare is poor. 

Healthcare Insurers Restrict Access, Choice, and Manage Cost

The healthcare system is one in which consumers participate. However, many restrictions and parameters exist for receiving care.

For example, appealing a health insurance denial can take months. Physician offices are buried under denials. As a result, patients wait to receive care or may die before they receive care.

The healthcare system fails caregivers who spend hours on paperwork and phone calls. Many times, caregivers and the elderly give up. The insurance companies win because they don’t have to pay a claim.

Managing health is complex because it requires knowledge of health, navigating healthcare systems, and recognizing the associated legal and financial planning that impact quality of life.

What is Healthcare Consumerism?

Healthcare consumerism places responsibility on consumers who struggle to make informed medical care decisions independently, without access to medical expertise, wisdom, and perspective. And even when physicians provide information, the consequences may not be fully understood.

Reliance on healthcare providers for medical decision-making support is challenging when consumers, patients, and their caregivers lack trust in the system, and medical appointments are rushed.

Healthcare providers offer information with the expectation that consumers understand the next steps and consequences of their actions.

Healthcare Systems Fail to Support Caregivers and the Elderly

Even though organizations have policies to support health literacy competency, many of these systems fail caregivers and the elderly, who may not know what questions to ask.

Frontline workers like nurses and social workers may be rushed and have too little time to support caregivers and the people they care for.

When consumers lack understanding of future health consequences, the likelihood that they will follow a doctor’s recommendations is low.

Daily life poses many competing priorities. The issues that seem most pressing get attention.

Health and well-being are unimportant until health problems arise or a family member becomes a caregiver for an elderly parent with multiple health problems.

Healthcare is One-Directional

Many adults view doctor-patient relationships as a one-directional system of care.

This means that patients see the doctor and receive information. They may not know what questions to ask or fully understand the short and long-term consequences of a health diagnosis.

Research confirms that while caregivers know more about the person receiving care, doctors and other healthcare professionals do not make time to consult with caregivers.

Information that caregivers possess about loved ones’ daily habits and needs can contribute to better medical care.

To ensure better care, family caregivers must learn advocacy skills and build relationships with healthcare providers rather than feeling invisible.

However, having legal authority, such as being a power of attorney agent, is often required to establish a relationship with a family member’s physician. Individuals and families also lack information about appointing a power of attorney agent.

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 healthcare providers.

When consumers feel intimidated by doctors and the healthcare system, they may postpone care or avoid seeking it altogether. This leads to more health problems and greater costs.

• The average consumer has low health literacy. Educational institutions, beginning in grade school, offer few or no classes on health, prevention, and finances, all of which impact health and well-being.
• Family members thrust into the role of caregivers lack experience. The majority of caregivers and the people they care about lack information about available services, so they struggle to manage daily care needs.
• Aging adults with health concerns who are low-income are more vulnerable. Many cannot seek, interpret, or evaluate information without family or other support. Some lack transportation to medical appointments and money for co-pays.
• Elders with memory loss who live alone or are isolated are at significant risk of self-neglect and elder abuse.
• Health insurance is difficult to navigate. Most consumers lack an understanding of co-pays, deductibles, and network providers.
• Low-income individuals and busy caregivers postpone medical care, which can lead to more severe health consequences.
• Consumers without health insurance or a primary care doctor use the emergency room for medical care, driving up healthcare costs for all consumers.

For these and other reasons, the healthcare system fails caregivers and the persons they care for.

What Do Healthcare Consumers Want?

Consumers want access to healthcare at a reasonable cost and to be treated with dignity.

The healthcare system fails caregivers who try to do their best, but in some cases are limited by access to information or elders who resist or refuse care. Caring for a loved one with dementia can be frustrating when physicians recognize memory loss but fail to diagnose or address the issue with an older adult.

In some cases, Adult Protective Services contacts family caregivers who feel limited in what they can do because an elderly parent’s physician lacks permission to speak with them.

While consumers rarely engage with medical care before a healthcare diagnosis, managing chronic disease takes attention to detail and follow-through.

The annual Medicare wellness visit is an opportunity to discuss health prevention. Family and primary care physicians should be more proactive in scheduling these visits, which can help the elderly and their caregivers better understand health status.

Prevention is Better Than Treatment

The healthcare system provides medical care based on a diagnosis after a person has a health problem, not before. Providers are rewarded financially for providing care and treatment for the sick, not for helping the healthy to remain healthy.

Healthcare is a backwards system.

This means that healthcare is sick care, not well care. Financial incentives exist for treating illness, not improving wellness.

If consumers can begin to recognize health prevention as an activity that helps avoid illness and chronic disease, they may become more active participants. Caregivers can learn from their experiences caring for sick elderly parents.

Caregivers and older adults can learn to be proactive. Partnering with healthcare providers to improve health literacy and gain knowledge about health conditions is a positive step to improve the daily quality of life for older adults. Having trusted relationships with providers can mean better health outcomes.

How Can Health Literacy Be Gained?

What is health literacy? Health literacy is the use of cognitive or mental skills, combined with social skills, in interactions with others to motivate seeking, gathering, understanding, evaluating, and using information to promote and maintain health.

Aspects of health literacy vary in skill levels. The ability to read and write is a primary learning skill important for improving health literacy and managing day-to-day health.

Aging adults and caregivers experience constantly changing situations that require the ability to seek and apply new information to address unexpected circumstances. Caring for a loved one with dementia, cancer, diabetes, or other diseases that require monitoring can be challenging.

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 unable to initiate research may also find themselves stuck.

Caregiver solutions result from taking action to manage daily activities and the health of aging parents, spouses, and loved ones. The ability to communicate and interact supports the gathering of information, the identification of preferences, and the management of life situations and health.

Using judgment to act on the knowledge gained to manage chronic disease, daily care situations, and interactions with family members and the healthcare system is a learned skill.

Caregiver exhaustion or the care recipient’s illness negatively affects family care situations. Caregivers may be hesitant to take on one more project, such as investigating home care or applying for Medicaid, given their already overloaded to-do list.

Coping with the day-to-day stresses of caregiving wears caregivers down cognitively, emotionally, and physically. Exhausted caregivers lack insight into the effects of stress on the care of spouses or aging parents.

Why Interactions With Healthcare Providers Can Be Intimidating

Interactions with healthcare providers can be intimidating due to medical terminology 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 really cared.

Discussions about bloodwork readings of cholesterol, triglycerides, or even blood pressure numbers may mean nothing to a patient without an explanation of why the information is essential.

Informational materials provided by a doctor or nurse may not translate into meaningful improvement. Improving health literacy involves reasoning, thinking, and decision-making, and is affected by how a physician, nurse, social worker, or other practitioner presents the information.

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

Caregivers, Aging Adults, and Consumers Mistrust the Healthcare System

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

Consumers who distrust the healthcare system feel vulnerable. As a result, the safest option is to do nothing until absolutely necessary.

A large number of consumers do not understand the 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 to themselves, leading to low participation levels.

Success in communication from the healthcare system and workplaces depends on the message, how it is presented, and, most importantly, on the perceptions of consumers, employees, and family members. If and when educational systems commit to adding health and well-being information into course curricula, 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 were less government involvement and control of healthcare.

The healthcare system fails caregivers and the elderly because it is financially incentivized to treat the sick, not promote wellness.

Making Sense of Healthcare for Caregivers and Older Adults

Preventive actions significantly affect health and well-being. When consumers are not engaged or interested in fundamental aspects of health and well-being, such as nutrition, exercise, or self-care, these gaps can manifest in middle age or earlier as chronic diseases.

Education is primarily a state and local responsibility in the United States. Without consumers demanding health education to improve knowledge, gain access, and increase healthcare choices, states will not consider making health or financial literacy a part of the curriculum.

Nor will the United States make progress toward facing the realities that education in health and financial literacy is critical for persons of all ages.

Changing the face of healthcare in the United States will require significant effort and will not yield immediate rewards.

Healthcare systems chase one process improvement after another. Without educating young consumers, who will become the elderly population of the future, no nation in the world will make progress in reducing chronic disease, lowering healthcare expenditures, or improving healthcare for all.

Consumers and patients who have been limited by the healthcare system for so long have more power than they realize to advocate for their needs.

Not asking questions or failing to speak up to gain healthcare literacy and learn about preventive actions is like Dorothy wearing the ruby slippers in The Wizard of Oz, not realizing she had the power to go home anytime.

Knowledge and Wisdom Offer Caregivers and Aging Adults a Choice

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

Knowledge gained by seeking information, participating in caregiver courses or support groups, or consulting an eldercare expert can provide the support 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 access to it 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 lead to positive steps in caring 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. 

Interested in being more proactive about care for yourself or an older adult? Schedule a 1:1 consultation with Pamela D Wilson. 

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