Know Your Rights Guide to Surviving COVID-19 Triage Protocols for Fat Disabled People. Ontario, Canada

Image description: A fat femme with long, dark, curly hair and cat-eye glasses sits in front of colorful lights holding a sign that reads “It’s the discrimination, not the virus that’s going to kill us. (It’s the hate that broke my heart) #noICUgenics #NoBodyIsDisposable #DontRationOurCare with a drawing of a red broken heart.

CONTENTS

This document contains the following sections: 

• Background 
• What to do long before needing to go to the hospital
  • Documents 1 & 2: Power of Attorney for Personal Care and Power of Attorney for Property 
  • Document 3: Advance Directive 
  • Document 4: Will or Trust 
• Create a connection kit
• What to take to the hospital
• Strategies for advocacy
• Potential survival strategies to consider if you face discrimination 
• Sample letters to providers 
• More Resources
• About Us

Image Description: A fat, white adult with round glasses, very short dark hair and a red shirt holds a white paper sign that says in marker “I am not ready to die. #NoBodyIsDisposable #NoICUgenics”

BACKGROUND 

As of January 2021, Ontario is experiencing a COVID-19 crisis. Many long term care facilities are facing caregiver and medical-resource shortages and hospitals are at a tipping point: acute care wards of many major hospitals are running at maximum capacity and will begin to send patients to other regions across the province for care.

Ontario Health has rescinded its discriminatory triage protocols that excluded certain patients – disabled, ill, older, fat, and people perceived to have lower activity levels – from treatments that offer the best chance of survival, even when a sick person is likely to benefit from that treatment, or will die without it. However, it has not yet proposed a revised protocol. We are extremely concerned for our lives.

A revised protocol is coming too late to deal with the current surge in COVID-19 cases in the province. And we are concerned that a revised protocol, like the March 28, 2020 proposal, will include a discriminatory frameworks despite criticisms from disabled, fat, and aging communities, and despite the existence of The Charter and the Canadian and Ontario Human Rights Codes.

We share the concern that fat and higher weight people are facing direct discrimination based on weight and disability via triage protocols, or indirect discrimination based on weight and disability because of other diagnoses, perceived quality of life, and other stereotypes associated with higher weight. Such discrimination has a disproportionate impact on many Black, Indigenous, people of colour, and LGBTQIA people who already experience systemic inequalities and bias within the healthcare system.

We offer this toolkit as a way to help take care of each other. Remember that there are hundreds of thousands of fat, disabled people and allies who are rooting for you!

WHAT TO DO LONG BEFORE NEEDING TO GO TO THE HOSPITAL

If you can, it’s a good idea to get these 4 critical legal documents ready before you get sick. In Ontario, you can prepare some of these documents on your own or use a kit.

Documents 1 and 2:

Power of Attorney for Personal Care and
Power of Attorney for Property

Power of Attorney for Personal Care, sometimes called Medical Power of Attorney, is a document giving power to a person you trust to make medical decisions and advocate for you while you are unable to do so. 

Power of Attorney for Property, sometimes called Financial Power of Attorney, is a document giving power to a person you trust to make financial decisions for you while you are unable to do so. 

In Ontario, you can create your own Power of Attorney forms or use a kit but the paperwork must be signed by two adult people, in person. (See the resources at the end of this toolkit for more info and a link to a kit). 

• Choose your representatives carefully. The person must be trustworthy, able to understand and communicate what you want, make decisions for you if you are not able, and be ready to fight for you if necessary.
• Make sure your representatives keep a signed copy of the Power of Attorney documents on them at all times.
• Bring a copy of your Medical Power of Attorney with you to the hospital so care workers know who you have chosen. Otherwise, a Substitute Decision Maker will be appointed to you, most often this will be your closest family member.
• Discuss what you want to happen, including end of life decisions, with your chosen person before you go to the hospital.
• Disabled fat folks or anyone who may have more complex health directives may want to consult a lawyer.
• If care providers don’t know you have assigned a Power of Attorney or decision maker, they will make other arrangements and are not liable for decisions made on your behalf.

Image description: An illustrated stack of documents. The front document title is “Power of Attorney.”

EXAMPLE: Pilar needed a ventilator and was placed on one. She was sedated during the process and is now unable to speak. Pilar chose Ari to be her Medical Power of Attorney and they talked about her wishes in advance. When a hospital worker tells Ari they want to reallocate the ventilator that is keeping Pilar alive because a non-disabled patient needs it.

Ari is able to speak for Pilar and explain that Pilar does NOT consent to the removal of the ventilator, since removal is not needed for her own health and safety. Ari does not want the hospital worker to get into trouble, so Ari reminds the hospital worker that touching Pilar’s body to remove the ventilator without consent might be a crime, and that employees may not be covered by malpractice insurance or immunity when committing crimes. Ari tells the hospital worker that they should check with a lawyer that represents them personally (not just their boss or lawyers for the hospital), to figure out whether they could be personally liable in civil or criminal court for the harm they would cause Pilar by removing the ventilator without her consent.
     

Document 3:

Advance Directive

An Advance Directive gives instructions about what medical decisions you want made or it outlines your values and beliefs that will guide your decision maker in giving consent and making decisions for you if you are unable.

In Ontario, health care professionals must get consent from you or your decision maker at the time of treatment. An Advance Directive Communicates your wishes clearly in writing.

In Ontario, you can create your own Advance Directives or use a kit (see the resources at the end of this toolkit).

Each province and territory has rules around what requirements must be followed in making a healthcare directive, so look for what is required where you are.

• Keep a copy of your Advance Directive at home, give one to your Power of Attorney for Personal Care, and bring a copy to the hospital with you.
• Discuss what you want to happen, including end of life decisions, with your chosen person before you go to the hospital.
• Pack a copy of your Advance Directive in your go-bag.
• You may want to keep a copy of your Advance Directive, a clear instruction to not repurpose your ventilator, and info on the location of your go-bag on your refrigerator, marked clearly and boldly. (If paramedics take you to the hospital, they may look there for important documents).

Document 4:

Will or Trust

Wills and trusts are end of life documents that provide instructions about your wishes and where you want your property to go. There are many resources online to help you create these documents. An alternative is to hire a lawyer to prepare these documents for you.  If you die without these documents, the people making decisions might not be the people you want.

Create a Connection Kit

Create a Connection Kit to help you stay connected and to help providers connect with you as a human being worthy of life-saving treatment.

Make multiple copies of this because it can get lost in hospital transfers – have one attached to you/ your bed/ your door, one or more copies in your go-bag, and a copy that a friend can bring. Your connection kit can be tied to your gurney or looped around your wrist or neck where you and your care team can see it. Tie a string through the corner of a plastic paper protector or clear ziplock bag and attach it. 

Include in your Connection Kit:

• A print out of phone numbers of family and friends
• A photo of family or loved ones, facing out
• A humanizing photo of yourself in your normal life with friends or at work, facing out so medical staff can view
• A mini summary introducing yourself, facing out

Image description: Photo of a person wearing a sheet protector on a string around their neck, with a piece of paper inside that contains a photo of themselves dressed up, surrounded by  large handwritten words: “Allilsa Fernandez: I am: EMT, I love my pets, Peer Specialist, Someone’s child, I love pizza, Community organizer, I want to live, Thank you for saving me.” 

Image description: An illustration of a fat person’s arm with a  hospital ID bracelet, holding a document in a sheet protector. The document includes the headings “About me,” “Dear provider” and “Phone numbers,” along with phone numbers for the person’s wife and advocate, and an image of two smiling fat people hugging with the caption “I am loved.”

WHAT TO TAKE TO THE HOSPITAL

If you are going to the ER, you will want to bring as much support as you can. Many medical facilities have stricter limits on visitors or advocacy accompaniment right now so bring what you want and need with you in a go-bag. 

A hospital go-bag is a pre-packed bag of essential items that you, your loved ones, or paramedics can grab and take with you to the hospital if you need to go in an emergency. 

Pack the following items in your go-bag: 

• A Sharpie or surgical marker (bring a colour that shows up well on your skin).
• Advocacy Supports:
  • Phone
  • Phone charger
  • Charged phone batteries – as many as you can bring
  • Know Your Rights Toolkit printout
  • Printouts of advocacy documents/letters to providers (described below)
• Your Connection Kit
• A copy of your signed Medical Power of Attorney.
• Communication tools:
  • paper, pens, tablet or any device you can use easily
  • assistive communication devices
  • extra hearing aid batteries
  • spare eyeglasses or contacts

Image description: An illustrated cell phone and charging cable, with an extra external phone battery.

Consider bringing the following:

• Masks, gloves, tape, and whatever other medical supplies you need
• Medications (hospitals may not normally allow you to take your own medicine, however some people may feel more comfortable having their medicines with them, for example, to show a provider exactly what they are taking, or because there may be policy exceptions made due to medication shortages.)
• Notes on your medical history. It’s a personal decision to disclose your medical history as this may impact your access to triage-based care.
• Breathing-support equipment, like a CPAP/ BiPAP/ APAP or oxygen concentrator, if you have it. Considerations:
  • If there is a shortage, the hospital may not be able to supply you with needed equipment, so having your own could make a life or death difference.
  • Is equipment being “reallocated”? If so, are you risking your equipment physically being taken from you if you bring it?
  • The hospital may have policies preventing the use of personal equipment, or may lack the personnel to test it.
  • Make sure your name is securely on whatever equipment you bring.

STRATEGIES FOR ADVOCACY

• Be an advocate, bring an advocate. An advocate is a friend, family member, or any person you trust to fight for you and your wishes.
• Bring an advocate by phone if they can’t come in person. Many ERs and hospitals have policies prohibiting cell phone use, but you can try telling them that you want to have your advocate present via phone because they are not allowing non-patients into COVID treatment areas. If you need to have a person available by cell due to your disability, you can tell them you need them to make an accommodation in their policy. NOTE: You have the right to a reasonable accommodation for accessibility related matters.
• If you are disabled, you have a right to communication assistance. D/deaf people can get ASL interpreting or CART. Blind or vision impaired people have a right to papers in Braille or large print or in a computer file.
• NOTE: There are no laws against weight discrimination in Ontario (or anywhere in Canada), however you have the right to a reasonable accommodation for disabIlity/accessibility related matters. What “reasonable” means for the hospital or  government may seem unreasonable in other sectors or situations. Remember to ask for what you need (not want) and know that it is most likely reasonable.
• You can get information in another language, or you can have an interpreter.
• If you don’t have an advocate, bring someone to act as a witness; ask them to get names and take notes about what treatment you are offered and why. Again, you can ask to have someone witness over the phone on audio or video. 
• Attach your Connection Kit to your body/ your bed/ your door.
• You can write your desire for care and the phone number of your advocate/decision maker on your body using a sharpie.

Image description: A fat, white femme with a short blond bob and white stars behind her, holding a large white sign handwritten with marker that says “#NoBodyIsDisposable, Denying care based on protected characteristics is UNLAWFUL (and UNETHICAL and SHITTY.) #ImAPersonNotADifficultDecision #FatNotDisposable #DontRationOurCare 

Build Connection with Health Care Providers

• Try to connect with your providers. Remember they are under intense stress. Ask how they are doing.
• Empathize with the challenges and pressure providers are under.
• Humanize yourself. Show pictures of your family. Share something unique about yourself. Do your best to connect and be seen as a person.
• With regard to rationing, tell them you want the treatment options that provide the best chance to recover, just like nondisabled/younger/thin patients receive.
  • You can use your Sharpie to write your instructions directly on your arms or chest in case you become unable to communicate. Be sure that you do not accidentally write anything that conflicts with your choices in your Advance Directive 

You may communicate (speak, write, gesture, sign, or point to pre-written notes) your thoughts or desires. Practice saying these phrases out loud now, before you need to advocate for yourself or a loved one.

• I know that you became a provider to help people heal. I am asking you to help me.
• I am protected by the Constitution.
• I am protected as a disabled person under
  • The Accessibility for Ontarians with Disabilities Act (AODA), SO 2005, c.11.
  • Bill C-81: The Accessible Canada Act, SC 2019, c.10.
• What you are doing is WRONG.
• What you are being told to do is WRONG.
• This is against your oath as a provider.
• I do not consent to withdrawal of treatment.
• This is not triage, this is discrimination. I want treatment. (Examples: “I want to be resuscitated” or “I want high flow oxygen and BiPAP if no ventilator is available.”)
• I have questions. What alternative treatments are available? What treatments would be available if I was thin, not older, or not disabled?
• I don’t agree with your decision. I want to speak to a supervisor.
• I am not receiving equal treatment. I want to file a grievance.
• As a last resort: I want an ethics consultation. (If you don’t like the result, see what the appeal process is.)

Image description: An illustration of a fat patient in a hospital bed talking with a medical provider dressed in PPE standing next to the bed. The patient’s connection kit is tied to the bed rail.

MORE RESOURCES

• Note on having your paperwork signed: In Ontario, you need 2 witnesses to sign in person (no digital signatures). Your witnesses CANNOT be your guardian, spouse, partner, child or be under your guardianship; the person you’re naming your attorney; the spouse, partner or child of your Power of Attorney; a person under the age of 18.\
• Speak Up Ontario is an initiative of Hospice Palliative Care Ontario to improve awareness of health care consent and advance care planning. Speak Up has many resources including for people hospitalized with COVID-19, info on Power of Attorney, and Advance Directives:
  • Speak Up – Engaging in Advance Care Planning for COVID-19
  • Speak Up – Health Care Consent Advance Care Planning and Goals of Care in Ontario – Toolkit
• The Ontario Ministry of the Attorney General offers this online resource and a link to a free kit for creating a power of attorney yourself.
  • Ontario Ministry of the Attorney General: How Powers of Attorney Work
• ARCH Disability Law Centre – ARCH is a specialty legal clinic that practices exclusively in disability rights law. ARCH is dedicated to defending and advancing the equality rights, entitlements, fundamental freedoms and inclusion of persons with disabilities with low income in Ontario.
  • ARCH’s COVID-19 related resources and updates
• Pooran Law – Whole Life Planning Centre is a legal firm run by a lawyer who also teaches Critical Disability Law at York University.
• #NoBodyIsDisposable Campaign Against Discrimination in Triage – Join our 3 step action campaign to try to stop the discrimination being put in place.  

ABOUT US

This document was adapted from the U.S. focused Know Your Rights toolkit created by the #NoBodyIsDisposable Coalition. This Ontario focused toolkit was adapted by fat disability justice activist Tracy Tidgwell and fat disability scholar Fady Shanouda.

From the #NoBodyIsDisposable Coalition: We are people targeted by triage plans during the COVID-19 pandemic — people with disabilities, fat people, old people, people with HIV/AIDS or other illnesses — and our loved ones who don’t want us to die.​ We are allies who want to help. We partner with social justice and civil rights organizations, as well as medical professionals to demand policies that avoid triage and avoid discrimination in triage.

This Toolkit was produced with input from a lot of people – fat rights, disability, social justice and civil rights lawyers; leaders in fat liberation, elder services, and disability justice; doctors and nurses; students, artists and writers… Thank you to everyone for finding time in this crisis to share your knowledge. Have feedback, additional resources, or suggestions? You can reach us at nobodyisdisposable@gmail.com