Health Care Rationing During the COVID-19 Pandemic and Your Rights

During the COVID-19 emergency, various news reports have talked about a possible shortage of ventilators if there is a surge in hospitalizations. Because of these reports, many Minnesotans with disabilities are worried that they will not get equal access to health care if there are shortages during this pandemic.

The Office of Civil Rights at the U.S. Department of Health and Human Services issued a civil rights bulletin on March 28, 2020, which makes sure people with disabilities will have equal access to health care the COVID-19 pandemic. The bulletin says that health care providers must be fair and compassionate when treating people with disabilities. It also says that people with disabilities have the same dignity and worth as everyone else.

Before the COVID-19 crisis, the Minnesota Department of Health (MDH) reviewed issues related to crisis care during a pandemic. As a result of this work, MDH published several guides which can be found online. In May 2020, MDH put out updated guides after meeting with expert work groups and with the Minnesota Disability Law Center. These May 2020 guides talk about the allocation of scarce resources during the COVID-19 crisis, including ventilators and Remdesivir (a drug used in the treatment of COVID-19). At the same time, MDH also updated a more general crisis care guide. These May 2020 guides clearly protect the rights of people with disabilities. The Minnesota Disability Law Center (MDLC) encourages using these documents for advocacy during the COVID-19 crisis.   

You have the right to healthcare free from discrimination. Your rights are protected by federal laws such as the Americans with Disabilities Act (ADA) and state laws such as the Minnesota Human Rights Act. These protections do not change because of a public health emergency like the COVID-19 pandemic.

You have the right to equal access to healthcare. Health care providers must focus on you as an individual. This means they should look at objective medical data and how you would benefit from treatment when making treatment decisions.

Medical providers cannot deny, limit, or delay medical treatment because of a disability. Health care providers CANNOT:

• use assumptions or stereotypes about your disability or quality of life when making treatment decisions
• assume your disability or underlying diagnosis means you will use more resources than other patients
• assume your disability or underlying diagnosis automatically means you have less chance of survival or ability to benefit from a treatment or
• make you a lower priority for treatment simply because of your disability
   

You have the right to ask for reasonable modifications to medical treatment. Health care providers must make reasonable modifications so that you have an equal chance to benefit from treatments. This means you may have the right to keep using medical treatments for extra time if you need that for recovery. Health care providers should make modifications to policies if you need help from a family member or support person to help you communicate or access medical care.

If you would like to learn more about requesting reasonable modifications to medical treatment, read our fact sheet: Hospitals and Rights of Patients with Disabilities During COVID-19 for more information.

Rationing is when there is not enough of something and you have to decide who gets it and how much. Rationing health care can happen when there is not enough equipment or medication for everyone who needs them. When health care rationing happens, medical providers have to decide who gets treatment. Sometimes medical providers have to withhold treatment to some people even if it could help them. But medical providers CANNOT use a person’s disability as a reason to withhold life-saving care.

In May 2020, the Minnesota Department of Health (MDH) put out several guides about rationing. These documents say that rationing decisions cannot be made based on any of the following factors:

• Race, ethnicity, gender, gender identity, sexual orientation or preference, religion, citizenship or immigration status, or socioeconomic status
• Ability to pay
• Age (unless there are also other medical reasons why the treatment would not be effective)
• Disability status or co-morbid condition (unless there are other medical reasons why the treatment would not be effective)
• Ideas about how long someone might live (not counting current care) unless the patient is irreversibly dying or terminally ill and expected to live only 6 months or less
• Judgments that some people have greater “quality of life” than others
• Judgments that some people have greater “social value” than others

The May 2020 MDH guides say that the public will be told when rationing decisions and protocols must go into effect. MDLC advises that you talk to your medical team if you have questions about rationing. You can ask your medical team if rationing of treatments, such as ventilators or medications, are in effect. As a patient, you have the right to make informed choices around your health care planning. Knowing about the availability of treatments should be a part of this information. This right is protected under federal and state law.

The May 2020 MDH guides create a Triage Team to make rationing decisions if a resource is scarce. The Triage Team is separate from your health care team. This separation lets your health care team advocate for you and should let the Triage Team make decisions based on objective and non-biased information.

Yes, this process is called “secondary review” in the May 2020 MDH guides. If the Triage Team decides to limit your medical care, you and your authorized decision maker will be notified. If you disagree with the decision, you or your authorized decision maker can ask for a secondary review. A member of your health care team may also ask for secondary review. If you do not have an advocate like a family member or authorized decision maker, any decision to limit or stop your medical care is reviewed automatically.

If you ask for a secondary review, you need to be able to show that the Triage Team made the decision based on incorrect information about allocation criteria, like a patient’s prognosis, or that they did not follow the ethical guidelines from the May 2020 MDH guides.

If you are told you cannot have a secondary review and have questions about the process, contact the Minnesota Helpline for COVID-19 pandemic at 651-297-1304 or 1-800-657-3504 on Monday through Friday between 8:00 a.m. and 4:30 p.m.

Health care providers must provide reasonable accommodations to people with disabilities. This includes making reasonable accommodations that let a person with a disability have extra time to use a resource and get an equal opportunity to benefit from the treatment.

The May 2020 MDH ventilator guide says that a ventilator may be given to someone else when a patient is “reliably predicted to need a resource for a substantially greater amount of time than other patients currently needing the resource.” But it also says that triage decisions must not be based on disability status.

If you think your disability was considered when making a triage decision and it shouldn’t have been, you can ask for a secondary review of the triage decision. When you ask for a review, you should highlight evidence or records that you think show your disability was improperly used by the Triage Team.

Yes. If you want to officially give someone power to help you advocate for your rights, you can create a health care directive and name someone as your health care agent. You can name more than one person as your health care agent. Your health care agent can:

• help you communicate what you want from your health care
• advocate for your wishes and
• help you make decisions
   

You can learn more about health care directives on www.LawHelpMN.org.

If you are hospitalized before you can create an official health care directive, you can communicate to your health care team who you want to act as your authorized decision-maker. Under the May 2020 MDH guides, your medical record should be updated to include your authorized decision maker‘s contact information. If you have not named someone as your authorized decision-maker and you cannot make decisions for yourself, the medical team will work with your spouse, partner, family, or close friend to make decisions for you.

You may be able to use your own personal medical equipment in a hospital. If a health care provider’s policy does not let you use your personal equipment you can ask for a reasonable accommodation. Read more about the reasonable accommodation process on www.LawHelpMN.org.

No. Under the May 2020 MDH guides, personal ventilator equipment, including BIPAP and CPAP equipment, may not be taken and given to someone else.