By Sheila Ferguson

Approximately half (45% or 133 million) of all Americans suffer from at least one chronic disease, and the number is growing. Chronic diseases—including cancer, diabetes, hypertension, stroke, heart disease, respiratory diseases, arthritis, obesity, and oral diseases—can lead to hospitalization, long-term disability, reduced quality of life, and death. Chronic conditions are the nation’s leading cause of death and disability. According to the U.S. Department of Health, a chronic condition “is a physical or mental health condition that lasts more than one year and causes functional restrictions or requires ongoing monitoring or treatment.” Chronic diseases are among the most prevalent and costly health conditions in the United States.  

Suffering from a chronic illness forces you to learn more about the healthcare experience and your options. During an illness, you, a loved one, a caregiver, a guardian, or a power of attorney will have to make critical medical decisions. The decision-making process about healthcare should never be one-sided. Rather, it is a partnership between the patient and the healthcare provider. Thus, there must be mutual trust, respect, and honest communication between you, the patient, your representative, and the physician. The best health outcomes occur when there is open and honest communication regarding medications, procedures, treatments, and surgery.

Photo: Cottonbro Studio

It is the healthcare provider’s job to facilitate the patient’s understanding of the risks and benefits of all recommendations and medications.  Patients should be aware that they can decline or refuse medications, treatments, surgeries, procedures, and even hospital admissions and stays.

In the patient-doctor partnership, you must respect and trust your doctor; and you, in turn, feel understood and respected. This means feeling comfortable enough to ask questions about the risks and benefits of all recommended treatment procedures. Either way, consumers of healthcare must understand their rights and responsibilities concerning medical care. Overall, patients need to be aware of their right to informed consent, right to informed refusal, and the impact of declining care against medical advice (AMA). They are defined as the following:

The Medical Consent & Refusal Continuum

Consent

Refusal

Informed consent is where, after every-
thing has been explained, understood, and agreed upon, the patient permits to proceed
with the recommended care. This is equal to the patient’s agreement with their
physician. 

Informed refusal is where, after everything
has been explained and understood, the patient
decides against the recommended medical advice.
This is the lesser-known counterpart to the doctrine of informed consent. It arises when patients elect
not to undergo a procedure or accept medical advice provided by their physician. Going against medical
advice also falls within this category.

Overall, we should be aware that, in making an important health decision, our thoughts may be influenced by:

  • Financial concerns
  • Feelings of Depression
  • Fear
  • Misinformation
  • Personal values and beliefs
  • Desire not to be a burden to loved ones
  • Exhaustion from a long, painful illness and invasive medical procedures; and
  • The acceptance of death

In cases where you choose informed refusal, do not walk away mad. Spend time with your doctor to gain clarification of the issues at hand. Some of the most helpful hints include:

  • State your reasons for refusal and listen to the doctor’s recommendations to see if you can come to a shared decision.
  • Stand firm in your concerns and work towards clarification of the issues.
  • Consider the options that your physician provides.
  • Ask about the possible consequences of the procedure’s risks and benefits.
  • Agree to seek a second and third opinion 
  • Be patient with yourself and take the time to talk with family and friends before making a final decision.

Also, take responsibility when you invoke your right to refuse treatment. Ask to complete the proper medical form that reflects your choice. These forms can be obtained from your doctor, hospital, and nursing home administrators. Once completed, they will be added to your medical record. These forms include:

1) Against Medical Advice Form. An Against Medical Advice (AMA) form is a legal document that patients can sign to authorize doctors to release them against medical advice.  For example, patients who leave against medical advice are a risk to themselves and can be a potential medical-legal risk.  Signing the form certifies that the patient is refusing medical treatment against the advice of their attending physician and that they understand the medical risks and benefits.

2) Document Informed Consent in the procedure note. Below is an example: 

Date

Procedure Note

Mr./Ms. ______ was explained the major risks and benefits associated with ______ pro-
cedure, and I answered his/her questions. I obtained informed consent directly from the
patient in his/her language/through a professional interpreter/a nurse/staff/family member as an interpreter. The patient signed a consent form. The patient was then prepped in the
usual manner. A “time-out” check was performed. Signature

Informed Consent Template

3. A sample Informed Refusal Letter is as follows:  

[Insert date here]

Dear [patient name], A review of your medical record reveals that you have not chosen to follow the recommended plan of care that I have provided for you. It is advisable for you to [insert the plan of care]. If you choose not to follow the recommended plan of care, you could experience health risks including, but not limited to [insert risk of not following the plan of care]

You and I are team members in managing your health. Therefore, you must follow my recommended plan of care. If you have any questions about what you should do, please call our office at [insert office phone number]

Sincerely, ____________

You can read more about this topic in such articles as: 

An Empirical Study of Chronic Diseases in the United States: A Visual Analytics Approach to Public Health – PMC (nih.gov).

Informed Consent and Refusal | Hospital Handbook (ucsf.edu)

Relieving Bottlenecks in Patient Flow

Can You Leave the Hospital Against Medical Advice? (verywellhealth.com)

Refusal of Medically Recommended Treatment During Pregnancy | ACOG

When Patients Refuse Assessment of Decision-Making Capacity: How Should Clinicians Respond? | Law and Medicine | JAMA Internal Medicine | JAMA Network

Informed Refusal—What You Need to Know | Duke Health Referring Physicians

 

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Her published literary works span the realm of refereed scholarly writing and technical writing to playwriting, memoirs and creative non-fiction. To date, her co-authored works have been widely anthologized...