Informed Refusal

Patients have the right to refuse care. What does that really mean?

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When you go to a physician’s office or are admitted to a hospital, you will receive a plethora of paperwork for your signature. These documents (usually) include information related to: financial responsibility, Health Insurance Portability and Accountability Act (HIPAA), protected health information (PHI), emergency contacts, and advanced directives. Sometimes they include forms wherein you give consent to the provider to use photographs or videos of you or the procedure you are having.

If you are having a procedure, you should also receive a legal document for informed consent that outlines the procedure, the risks of the procedure and that you acknowledge and accept these risks. Informed consent is based on the principle of patient autonomy and ownership of our bodies. Simply put, we decide what we want done to us.

Per Shah et al, (2024), the elements of informed consent must be documented and must include:

• The nature of the procedure or intervention;

• The risks and benefits of the procedure or intervention;

• Reasonable alternatives;

• The risks and benefits of alternatives; and,

• An assessment of the patient's understanding of these elements.

Informed refusal is the flip side of informed consent.

It is imperative for the patient to understand all the elements of informed consent to make an informed refusal. In addition, the provider must assess the patient’s capacity to make a self-determination.

Per Pirotte and Benson (2023) capacity includes the patient’s ability to:

• Express understanding about their medical situation, the decision they are making, and any risks or benefits that are associated with that decision.

• Express a clear, consistent choice without frequently changing their mind.

• Appreciate the impact of their decision, defined as when a patient is able to apply the understanding of their medical situation to their own life.

• Reason, i.e., the patient's ability to infer the consequences of their decision and to express an explanation as to why they would rather refuse care.

Why would you refuse care? Here are a few possible reasons.

• Concerns about the costs of the intervention.

• The intervention is worse than the disease.

• The provider is not credentialed for the intervention.

• You want to go to another physician for a second opinion.

• You feel you are being coerced by the healthcare provider.

• It’s against your personal values or beliefs.

• You have had serious side effects from a previous intervention.

Here’s a personal anecdote about the last bullet.

Several years ago, an endocrinologist insisted that I needed to take zoledronic acid infusion for osteopenia. I had the infusion and it made me violently ill. I was bed-ridden with flu-like symptoms for two weeks. The symptoms subsided for two weeks—and then the flu-like symptoms returned for another two weeks. Was that side-effect ever mentioned during the informed consent conversation? No, nor was it on the paper I signed. I did not return to that endocrinologist, but I did take to my elliptical like a maniac and increased my lumbar spine density by seven percent per a dual-energy X-ray absorptiometry, or DXA scan.

Recently, I was told by a different endocrinologist that based on my last DXA scan, I needed to start treatment with denosumab. There was no informed consent or conversation, just a note in my electronic file “Patient advised to start [brand name of denosumab]”. If you go back to the checklist of informed consent, none of the elements was addressed by the physician. Denosumab is not a pleasant drug. Side effects can include: hypocalcemia, serious infections, dermatologic reactions, and osteonecrosis of the jaw. Necrosis of the jaw is an extremely painful condition. People like me who have had extensive oral surgery and are on this medication are at greater risk for a necrotic jaw.

What did I do? I read the most recent DXA report, researched the recommended drug, and spoke with my primary care physician. I told her I was not keen on this treatment and I wanted to begin strength training with a personal trainer to build up my arm and hip bones. She agreed it was worth a try and that I should have another DXA scan in two years to see if my bone density improves.

You have rights as a patient.

The American Hospital Association and the American Medical Association recognize the rights of patients entrusted to their care. Maryland law requires hospitals to provide a copy of the Patient’s Bill of Rights to patients upon admission.

The patient’s bill of rights explicitly states patients have a right to: “have respect shown for your personal values, beliefs, or wishes; to be involved in you plan of care; and to refuse care.” Perform your due diligence and insist on more information. If you feel the least bit uncomfortable with the advice you receive, get a second opinion. If your physician or healthcare provider objects to your obtaining a second opinion or puts up obstacles, such as withholding your medical records, that is a big red flag and a violation of your patient rights. Remember, you are a member of the healthcare team and a participant in your healthcare. It’s your body and you decide what can be done to you.

References for this post along with other resources

American Hospital Association (AHA). The patient care partnership. https://www.aha.org/other-resources/patient-care-partnership

American Medical Association (AMA). (n.d.) AMA code of medical ethics: Opinion 1.1.3 Patient rights. https://code-medical-ethics.ama-assn.org/ethics-opinions/patient-rights

Buchbinder, S.B., Shanks, N.H. & Kite, B. (2019) Introduction to health care management, 4th Ed. Jones & Bartlett. https://www.amazon.com/dp/1284156567

Buchbinder, S.B., Shanks, N. H., Buchbinder, D., & Kite, B. (Eds). (2022) Cases in health care management 2nd Ed. Jones & Bartlett. https://www.amazon.com/dp/1284180395

Buchbinder, S.B., Shanks, N.H., Rogers, R.K. (2026). Introduction to healthcare management, 5th edition. https://www.amazon.com/Introduction-Health-Management-Sharon-Buchbinder-dp-1284276104/dp/1284276104

Everts-Graber, J., Lehmann, D., Burkard, J.-P., Schaller, B., Gahl, B., Häuselmann, H., Studer, U., Ziswiler, H.-R., Reichenbach, S. and Lehmann, T. (2022), Risk of osteonecrosis of the jaw under denosumab compared to bisphosphonates in patients with osteoporosis. J Bone Miner Res, 37: 340-348. https://doi.org/10.1002/jbmr.4472

Maryland Hospital Association (MHA). Patient’s bill of rights. https://mhaonline.org/caring-for-communities/patient-resources/patients-bill-of-rights/

Marylanders for Patients Rights (MforPR). (2019). Know your rights as a hospital patient: It can save your life! https://www.marylandpatientrights.org/

Drugs @FDA. (2020). Labeling package insert approval for RECLAST® (zoledronic acid). https://www.accessdata.fda.gov/drugsatfda_docs/label/2020/021817s028lbl.pdf

Drugs @FDA. (2024). Labeling package insert approval for Prolia (denosumab). https://www.accessdata.fda.gov/drugsatfda_docs/label/2024/125320s213lbl.pdf

Pirotte, B.D., Benson, S. Refusal of care. [Updated 2023 Jul 24]. In: StatPearls [Internet]. StatPearls Publishing; 2025 Jan https://www.ncbi.nlm.nih.gov/books/NBK560886/

Shah, P., Thornton, I., Kopitnik, N.L., et al. Informed consent. [Updated 2024 Nov 24]. In: StatPearls [Internet]. StatPearls Publishing; 2025 Jan-. https://www.ncbi.nlm.nih.gov/books/NBK430827/

Vermont Ethics Network. (2025). Right to refuse medical treatment. https://vtethicsnetwork.org/medical-ethics/right-to-refuse-treatment

Whitten, C. (2021, August 11). How to ask for a second opinion. https://www.webmd.com/a-to-z-guides/features/how-to-ask-for-second-opinion