Introduction

Webcast archive: NoBody is Disposable

This week: the #NoBodyIsDisposable guide to defending your rights if you’re hospitalized during the COVID-19 pandemic, and we remember Candace Lewis and Jean Truchon.

Webcast archive: NoBody is Disposable

During the COVID-19 pandemic, we will not present our webcast, due to technical problems caused by heavy internet usage. However we are providing the text as a bulletin to offer up-to-date information about assisted suicide, euthanasia and ending-of-life practices for the disability community.

KNOW YOUR RIGHTS: “NOBODY IS DISPOSABLE”

  • We’ve adapted a “Know Your Rights” toolkit for people facing potential triage discrimination based on disability, age, race, sexual orientation/identity or weight during the COVID-19 pandemic. The full toolkit (written for users in the United States) is at Know Your Rights
  • The #NoBodyIsDisposable campaign, reminds readers that the “toolkit is not legal or medical advice. Information has been sourced from the web, and is for general information purposes only. This is a changing situation. Laws differ by location, policies differ by hospital. This document may change as things progress, so check back. This information may not be up to date. It’s up to you to be sure the information is correct” and applies to you. 
  • As the world struggles with the outbreak of COVID-19, many places are facing shortages of staff, supplies and equipment, especially ventilators. Many countries, individual states in the U.S., professional organizations, and medical facilities are proposing discriminatory triage protocols that exclude some disabled and older people from treatment that offers them the best chance of survival, even when they are likely to benefit from that treatment and will die without it. Such policies are common despite laws that prohibit discrimination.
  • Activists are also concerned that fat people are facing direct weight discrimination via triage protocols, or indirect weight discrimination (based on other diagnoses or stereotypes associated with higher weight). Such discrimination may have a greater impact on people of color, who already face health problems due to systemic inequalities and bias within the health care system. Other groups, including the LGBTQIA community, may also be at risk.

KNOW YOUR RIGHTS

  • In Canada, people have the following health-related rights:
    • To receive appropriate and timely care;
    • To be treated with dignity and respect;
    • To receive health services without discrimination;
    • To have their personal and health information protected from disclosure;
    • To have access to their health information;
    • To refuse consent to any proposed treatment;
    • To receive information relating to any proposed treatment and options;
    • To the recognition of your health care proxy or substitute decision-maker;
    • To the recognition of your Advance Directive;
    • To a second opinion;
    • To pain and symptom management;
  • The federal Charter of Rights and Freedoms prohibits discrimination, and each province and territory also has laws that make discrimination illegal. 
  • Also, Canada has agreed to the United Nations Convention on the Rights of Persons with Disabilities, which guarantees the rights to life (Article 10) and health (Article 25).

WHAT TO DO BEFORE YOU GET SICK 

  • It’s a good idea to prepare four important documents before you even get sick.  
    • 1. A Durable Power of Attorney for Healthcare (sometimes called a health care proxy) is a document giving power to a person you choose to make medical decisions on your behalf and advocate for you while you are unable to do so. 
    • 2.  A Durable Financial Power of Attorney is a document giving power to a person you choose to make financial decisions on your behalf while you are unable to do so.
    • When preparing these documents:
      • Choose your representatives carefully. The person must be trustworthy, able to understand and communicate what you want, and be ready to fight for you if necessary.
      • Make sure they keep a signed copy of the Power of Attorney documents on them at all times.
      • Bring a copy of your Durable Power of Attorney for Healthcare with you to the hospital so staff know who you have chosen. Otherwise, they might make assumptions.
      • Discuss what you want to happen, including end-of-life decisions, with your chosen person before you go to the hospital.
      • If you already use your own ventilator, or might be put on a ventilator, and are concerned it will be given to another patient because of your disability, weight or age, discuss your options with your chosen person.
    • 3.  An Advance Directive is a written statement of your wishes about what kind of medical treatment you want to receive. If you use a BiPAP or ventilator, you should say if you don’t want your machine given to someone else while you’re still using it! 

 

 

      • Keep one copy of your Advance Directive at home, give one to your health care proxy, and bring a copy to the hospital with you.
      • Discuss what you want to happen, including end of life decisions, with your health care power of attorney before you go to the hospital.
    • 4.  Wills or Trusts are documents that explain what you want to happen after you die; to your body, your stuff, your money and your property.  There are many resources to help you create these documents. If you die without these documents, the people making decisions might not be the ones you want. 

 

 

  • You may want to post copies of these documents, along with the location of your go bag on your refrigerator, since that’s where paramedics often look for important documents.
  • Create a Connection Kit to help providers connect with you as a human being worthy of life-saving treatment. Tie a string through the corner of a plastic sleeve or clear ziplock bag. The kit should include:
    • A list of phone numbers of support people (health care proxy, family and friends);
    • List of food / medication allergies.
    • A photo of you in your daily life with family, friends or at work, facing out so medical staff will see you as a real person;
    • A photo of support people, facing out
    • A short summary introducing yourself, facing out

 

 

 

 

 

 

  • Make multiple copies of the connection kit because it can get lost in hospital transfers.  Attach one to your body, one to your bed, one to your medical chart, one in your “go bag” and give copies to family or friends who advocate on your behalf. Place it so the medical staff can see it. 

WHAT TO BRING TO THE HOSPITAL

  • A support person (a health care power of attorney or health care proxy, someone to provide personal care or a person to communicate or advocate on your behalf).
  • A “go bag” that contains:
    • Medications (plus a list of all the medications you take, with prescriptions);
    • Devices, equipment and supplies (glasses, contact lenses, hearing aids, communication device, mobility aids, glucometer, etc.);
    • Safe or preferred foods or drinks (e.g. artificial sweetener, lactose-free products, stress-reducing tea);
    • A felt-tip marker;
    • Cell phone, earphones;
    • Charging equipment (plug in unit, connection cord, extension cord) and extra batteries;
      • For cell phone;
      • For wheelchair;
      • For communication device;
    • Masks and gloves for support person;
    • Connection kit (see above);
    • Copies of the four important documents (described above);
    • Medical insurance card(s) and picture ID;
    • Communication tools (paper, pens) or devices
    • Reading or listening material

STRATEGIES FOR ADVOCACY

  • NoBody is Disposable!  You have the right to live and get medical care. You can’t be refused health care because you are disabled, old, a woman, fat, poor, a person of colour, indigenous LGBTQIA, or whatever minority status you have.  That’s discrimination and it’s illegal. Your life is worth just as much as anyone else’s, because you are a human being.
  • Be an advocate, bring an advocate. An advocate is any person you trust to fight for you and what you need.  If they can’t come in person, bring an advocate by phone. Though some hospitals have policies against using cell phones, you can tell them that you want to have your advocate present via phone as an accommodation to your disability.
  • If you are disabled, you have a right to communication help. D/deaf people can get a sign language interpreter or CART. Blind or vision impaired people have a right to printed materials in Braille or large print or as a computer file. Information must be given in plain language.  If you have trouble speaking or understanding, you have a right to use whatever communication method will help you understand what others say, and express yourself.  
  • You can get information in your first language, and you can have an interpreter if no one speaks your language.
  • If you can’t find an advocate, ask someone to act as a witness.  Ask them to get the names of medical staff who deal with you and take notes about what treatment you are offered and why.
  • You may want to write your directions for care, the phone number of your advocate/decision maker, and allergies you have to medications on your body using a marker.

SURVIVAL STRATEGIES TO CONSIDER IF YOU FACE DISCRIMINATION

  • We hope you won’t need to fight for your survival. But we also know that some of us will be in life or death situations, so it’s worth weighing many options. We know that it will be even harder for people of colour, trans/non-binary folks, and other marginalized groups. Keep in mind that some of these strategies, used in the wrong situation, could make matters worse or may not work, so think carefully and calmly about what you do. For some people, it may be better to resist right away; for others, trying to be nice may be the best approach;  it’s possible to be assertive and polite at the same time. Use what works for you in your situation, discard what does not. 

Build Connection with Health Care workers:

  • Try to connect with your providers. Try to understand how they may be feeling.  Remember they are under intense stress. Ask how they are doing.
  • Humanize yourself. Show pictures of your family. Share something unique about yourself. Do your best to be seen as a person.
  • If the question of who gets to use medical equipment comes up, explain that you want the treatment options that provide the best chance to recover, just like nondisabled / younger / thin / white patients receive. 
  • You can use a marker to write your instructions directly on your chest in case you become unable to communicate. Be sure that you do not write anything that disagrees with your choices in your Advance Directive. 
  • If health care providers try to make you feel less worthy of the best chance to live, remember that there are many disabled people and allies who know you deserve to live and we are rooting for you!

Claim your rights

  • Politely, but confidently, inform health care staff about the laws that prohibit discrimination.
  • If you are unable to speak, use gestures or writing to ensure that staff understand that they must help you communicate effectively.
  • Explain that you came for services there because you were worried about discrimination.
  • Insist on your rights.  You can try phrases such as:
    • “I know that you became a provider to help people heal. I am asking you to help me.”
    • “I am protected by the Charter of Rights and Freedoms.”
    • “I am protected by provincial anti-discrimination laws. 
    • “What you are doing is WRONG.”
    • “What you are being told to do is WRONG.”
    • “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 other treatments are available? What treatments would be available if I were 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.”
    • “I want to speak to the ethics board. (If you don’t like the result, see what the appeal process is.)

Resources

  • COVID-19 Communication Toolkit
  • Patients’ Rights 
  • The #NoBodyisDisposable coalition includes people with disabilities, fat people, old people, people of colour, people with HIV/AIDS or other illnesses, and allies who don’t want us to die.​ 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.

IN MEMORIAM: CANDACE LEWIS AND JEAN TRUCHON 

  • Two icons of the assisted suicide and euthanasia (AS & E) movement have died under difference circumstances.
  • Candace Lewis, a Newfoundlander with multiple disabilities, died this week at her home in St. Anthony of natural causes.  Candace and her mother, Sheila Elson, gained some media attention when they spoke publicly of an incident where a doctor suggested medical aid in dying for her, and accused Ms. Elson of being “selfish” for refusing to consider the option.  Candace’s story was featured in the Euthanasia Prevention Coalition’s 2018 documentary “Fatal Flaws” 
  • The film’s director, Kevin Dunn said “her story touched thousands around the world and became an instrument in changing public discourse on assisted dying laws.“
  • Also this week, Jean Truchon was euthanized in Québec.  Mr. Truchon was one of two plaintiffs in a case challenging the eligibility requirement in Canada’s medical aid in dying (MAiD) law that the person’s natural death must be reasonably foreseeable.  In a September, 2019 decision, a Québec Superior Court struck down that provision, as well as the “end of life” requirement in Québec’s euthanasia law, declaring that they violated the plaintiffs’ Charter rights.

In a statement released by his lawyers, Mr. Truchon explained why he moved up the date of his euthanasia from June 22 to April 7. “Before this pandemic, I had all the difficulties in the world keeping my head above water, with all my activities. The Coronavirus has literally stolen my time with those I love. Seeing what is coming frightens me the most.”