A Caregiver's Fear: What if I Make the Wrong Decision About a Loved One’s Care?

“What if my decisions about my loved one’s care are wrong and cause harm?“

Many people thrust into the role of caring for an aging loved one experience this concern. Caregivers take on many roles that require them to make everyday decisions that leave them wondering if they are doing the right thing. Unfortunately, most people caring for aging parents or loved ones start with little to no training or experience.

The stress of having to take action and fear of making mistakes can be terrifying, leaving a caregiver to feel inadequate and insecure about their ability to perform the job. What if they cause their loved one’s condition to worsen or they hurt their loved one unintentionally? If the caregiver has little support or is the sole provider of care, the stress level is even higher. When guilt and medical liability concerns cause a caregiver to close their mind to a solution, the ones they are caring for will suffer. It’s not easy, but it’s important to stay informed and use the resources available when taking action.

The Stress of Having to Make Decisions About Treatment 

As a health advocate, you may be called upon to make numerous medical decisions for your loved one. A recent survey by Family Caregiver Alliance revealed some of the common decisions and tasks that caregivers make for aging parents and other relatives:

• 45% perform medical and nursing tasks
• 66% monitor the person’s condition and adjust care based on their assessment
• 64% communicate with healthcare professionals on behalf of the person
• 96% assist with activities of daily living (ADLs) that include dressing, bathing, personal hygiene, eating, and getting in and out of bed
• 50% act as their loved one’s health advocate

A caregiver also assesses the person’s emotional state and monitors them for unusual behavior. In many cases, the person providing care is the one who decides when to contact a doctor or engage with another healthcare provider such as a therapist.

Without medical experience or training, treatment decisions are often made on a “gut feeling” or based on information found with an online search that may not be accurate, further increasing stress, anxiety and fears of medical liability and emotional guilt over making a wrong decision.

What are the Potential Outcomes of Making the Wrong Decisions About a Loved One's Care? 

As the primary caregiver, you deal with the consequences of your decisions about care. For example, if you accept a plan of care, you are required to implement that care that brings additional responsibilities such as:

• Understanding the risk your decision could result in pain and a less quality of life. In addition, you and your loved one might incur substantial medical bills because of your decision.
• Dealing With Family Fallout. It’s unfair, but regardless of your choice, there are likely to be some family members who disagree with your decision. As a result, they may blame you if or when something goes wrong, even though they chose not to take part in the decision-making. At the very least, you could lose some relationships because of your decisions.
• Monitoring and managing their mental wellbeing in addition to the physical
• Ensuring appointments are not missed. If you cannot take time away from your job or family duties, you must arrange for someone to take your parent to those appointments, arrange for medical transport, or hire a professional service to assist.

The COVID pandemic created the need, as well as support and funding, for patients to take advantage of virtual therapy. Tools such as Livindi, enable therapy and other types of appointments to be delivered to patients in the comfort of their home and is covered by Medicare.

What are the Legal Ramifications of a Decision That Causes Harm?

State law varies. However, most criminal statutes prohibit a caregiver from intentionally or knowingly causing harm that results from actions or omissions. According to most state tort laws, a person could be sued for injuries and damages they cause because of their willful acts or negligence.

Therefore, if your decisions cause harm to the person in your care, you could face criminal charges and a civil lawsuit. However, the state and the person suing you have the burden of proving their case.

Caregivers can seek legal counsel regarding legal documents they might need to shield them from liability. Because state law varies, it can be wise to speak with an attorney to ensure that the documents are specific to that state.

How Can A Caregiver Avoid Being Put in Such a Position?

If you are responsible for caring for an aging parent or loved one, there are several steps you can take to help avoid issues and problems.

First, understand your legal requirements and options. As mentioned above, talk with an elder care lawyer near you. Ask about issues such as:

• Your legal authority to make health care decisions
• Your liability for medical decisions you make
• What is and how to get the necessary training before hospital discharge or the in-home services your loved one may be entitled to
• Whether you need to be appointed as a health care agent
• Whether you need a financial power of attorney to manage Social Security, Veterans Benefits, and other financial matters
• Ask about your rights under the Family and Medical Leave Act (FMLA) and state-specific laws
• Understand your rights to access health information
• Consider a Personal Care Agreement between the caregiver providing care and the person receiving care
• Understand your rights regarding Family Responsibilities Discrimination (FRD)
• Know and be able to spot the signs of elder abuse and exploitation so you can report problems if you believe a provider or health care professional is abusing your loved one

Second, ensure that you have a complete picture of your loved one’s health and medical needs. Staying educated about your family member’s condition can help you make better informed decisions. For example, 50% of Americans do not take their medications as prescribed. Understanding your loved one may be more prone to not take their medication can help you take action, either by incorporating tools or strategies to ensure they receive their medicines to avoid potential health problems. Livindi offers medication reminders that are sent right to the tablet in your loved one’s home. Caregivers can also check an app remotely to see if the medications have been taken.

Also, never assume that your loved one’s doctors consult with each other or review their notes, even when they are in the same practice or hospital system. Bring copies of current test results and a list of all medications to each appointment. Ask specialists and doctors to confer with each other to discuss the recommended treatment plan to determine if there could be any issues that you need to address.

You Don't Know What You Don't Know: Using Technology to Help Make Better Decisions and Improve Healthcare for Loved Ones 

Doctors and other health care providers will not make decisions for you. In some cases, it has been reported that some Doctors choose whether or not to offer a treatment to a patient based on their preconceptions, such as assuming a patient can’t afford it.  Instead, they give the minimum information they believe you need to know about the treatment they are offering – you don’t know what you don’t know.

Take Advantage of Your Resources and AI

It’s important to realize you have some control. Besides asking questions, consulting with other experts and family, upon hearing a diagnosis, It is up to you to do the additional research about any treatment. Take advantage of available online resources such as ChatGPT to gain awareness  and help you feel more comfortable with your final decisions about the care and treatment of your loved one.

You Don't Have to "Go It Alone"

Livindi provides a wide variety of services and devices to assist caregivers. Using Livindi, you can “take other people” with you to appointments through a video call at the appointment. Other family members can listen to the doctor’s explanations, test results, instructions, and other information. In addition, they can ask questions and assist you in acting as a health advocate.

Livindi has a variety of devices and systems to monitor the physical and mental wellbeing of your loved one to help you make educated and informed decisions about care. Using a biometric device such as a sleep sensor enables caregivers to monitor sleep patterns. If, for example, the sensor reports the person may be getting up often during the night to use the bathroom, it may be an indication they are suffering from a UTI and need medical attention. Everyone on your care team has access to the same information through the app which also can make response time quicker. The care team may include family members, medical providers, and non-medical service providers. You even have access to concierge services to help answer questions or refer you to the right sources to help you.

If you’d like to learn more about Livindi, give us a call at (508) 416-6030. You can order Livindi by visiting our shop page here:  https://www.livindi.com/collections/all.