What to Do when Care becomes a Burden

Russ Krengel Patients

One common issue people encounter when dealing with chronic or terminal illness is the challenge of treating several conditions at the same time. You may have multiple physicians to manage each condition, and each physician prescribes a different medication or treatment plan.

While each doctor is most concerned with the management of the disease they are treating, they may not be fully aware of how many medications you’re taking or treatments you’re given. They’re focused on providing the best possible treatment for the disease or condition they specialize in treating.

Although your doctors have your best interests at heart, and want the best treatment outcomes possible, you may feel overwhelmed with the number of health tasks you’re asked to do. You may occasionally skip a treatment.

If you or a loved one suffers from multiple conditions at once, you may have experienced this. What can you do to combat it? How can you engage with your treatment plan and maintain your quality of life when it sometimes seems like these desires conflict?

What Is the Burden of Treatment?

The burden of treatment occurs when you become so overwhelmed and fatigued by the number of treatments you have that you begin to skip some of them.

Often, treatments for chronic or terminal illnesses don’t have an end point. When your physician prescribes a medication for a chronic condition, you’re likely going to take it for as long as possible, unless medicine advances to create a different treatment.

If you have several chronic conditions, you may have several medications you need to take for a long period of time, and these medications might conflict with one another. Occasionally, side effects can cause medical issues of their own, requiring further medical intervention.

All of these issues can snowball into an overwhelming problem, causing you to become overwhelmed and skip a treatment or two.

How Can You Lessen the Burden?

What can you do to lessen the burden of treatment, so you don’t negatively affect your medical care? Fortunately, Dr. Mary Tinetti, chief of geriatrics at Yale School of Medicine and leader of the Patient Priorities Care initiative, has some suggestions.

1. Decide What Is Most Important to You

Although, all your medications and treatments are important, you need to decide what matters the most to you. Is there a social activity you enjoy but your treatments impede you? Do you want focus on managing your symptoms?

According to the Patient Priorities Care initiative, the patient gets to determine what aspects of their life are most important, and which treatments best allow them to pursue those aspects.

2. Streamline Your Medical Care

Once you figure out which medical treatments are most helpful to you, you and your doctors can adjust your treatment plan. You may decide to reduce or eliminate medications or procedures you and your doctors agree won’t contribute positively to your quality of life.

3. Focus Your Long-term Care Goals

If you change your treatment plan, you may eliminate medications meant to prolong your life, but ultimately not beneficial to your quality of life. This is a tradeoff you might make because you want to be able to engage in hobbies impeded by this treatment.

Focus on the long-term goals most important to you. Perhaps you’d rather be able to do those important activities and spend time with your friends and family than live a longer period of time without doing those activities.

Potential Risks of Lessening the Burden

Dr. Tinetti’s approach to lessening the burden of treatment is somewhat controversial to the medical establishment. Physicians operate according to certain guidelines, and because lessening the burden of treatment might not meet these guidelines, some doctors might be opposed to it.

Here are some of the possible objections your doctor might raise:

  • Not Enough Time: Initially, meeting with a patient to discuss optimizing treatments might take longer than normal, but according to Dr. Tinetti, this is only temporary, and in the long run, appointment time will return to normal.
  • Centers for Medicare and Medicaid Services Guidelines: Physicians must follow these treatment guidelines, and lessening the burden of treatment may violate them, for some patients, requiring the doctor to detail in writing the reason they’re not following treatment guidelines.
  • Universal Care versus Individual Care: Doctors often treat diseases according to a broad standard of care. Patients are individuals so care recommended for “most” patients won’t work for all of them.

Not all physicians will agree to lessen the burden of treatment; however, you, as the patient, have the ultimate say in determining the type of care you’ll receive.

Learn More about Managing Your Burden of Treatment

If you’re curious to know more about burden of treatment and how you and your family can improve quality of life while maintaining good medical care, contact us at Kindful Hospice. Our team of medical professionals can help you and your loved ones identify what treatments may work best for you.