Patient Pathways, Empowered Patient Checklist

The Empowered Patient Checklist

For faster, safer care in the community, emergency room, hospital… and back home.

The best way to prevent crisis is to plan ahead… and to expect the unexpected:

  • Know your health history, your medications, and your contact information.
  • Assign a Substitute Decision Maker or Representative – and let them know about your Values, Beliefs and Preferences for care. See our Patient Pathways webpage for a basic guide to Advance Care Planning.
  • Use the Patient Pathways “In Case of Emergency” form for free and put it with other vital documents on your fridge
  • Put your information where it can be found (on the fridge, or a clear note on the fridge with the location).
  1. Plan for all health appointments:Patient Pathways, Empowered Patient Checklist
    • Write down and prioritize what you need to talk about.
    • Take a notebook and write notes during the appointment – or immediately following.
    • For any appointment where you are getting complicated instructions or information (an information dense appointment – such as the Cancer Agency), take someone along with you to take notes and help you ask questions you’ve forgotten.
    • Use a calendar to plan appointment dates – it’s hard work to be sick!
  2. Get faster referrals to specialists:
    If the future of your health depends on seeing a specialist…
     – Be proactive…
     – Be assertive.

    BEWARE THE FAX MACHINE!Patient Pathways, Empowered Patient Checklist
    At least 1/3 of faxes do not go through.
    Unreceived faxes and incomplete information can cost you months of unnecessary wait time and possible progression of your disease.
     – Fax machines have been linked to unnecessary deaths.
     – NEVER assume your fax made it to the specialist’s office and was handled appropriately.

    Specialists ‘triage’ based on the information they receive.

    • The more information your doctor puts on the referral form, the better.
    • If it’s “Urgent” or an “Emergency” to see a specialist, ask your GP to make sure that’s clear and that there is enough information to support that.
    • For example, “Abdominal pain,” gives the specialist little information. But, “Urgent referral requested: New and sudden of right lower quadrant pain that patient rates as 8/10 on the pain scale. Some bleeding recently noted in stools,” gives the specialist a much better idea of what’s going on.
    • Find out who your referral was sent to. If you haven’t heard anything within a week, check with your doctor to ensure the referral was sent and who it was sent to – even if there is a message that you will be contacted in several months. Or, ask your doctor to confirm it went through.
    • If your condition worsens, tell your GP and ask that they update your referral. Do not hesitate to call the specialist and let them know about the change in your condition.
  3. Speed up testing requisitions:
    • Wherever possible, ask what was put on the requisition (or to see the requisition) and see if everything you want tested is being tested.
    • If your requisition was faxed, find out where your testing requisition was sent to. In a few days (time for processing) call the testing facility and ask if the requisition was received.
    • If it’s practical for you, ask to be put on the cancellation list.
  4. Get the care you need in the Emergency Room.
    • If you go to Emergency, take your In Case of Emergency (ICE) forms!
    • Be responsible! Don’t go to the ER unless it’s an emergency. But, do go when you are concerned (always go for chest discomfort and neurological changes).
    • Be assertive – not passive and not aggressive. Honey ALWAYS works better than vinegar.
    • Be as clear as possible about your symptoms and concerns.
    • Be assertive about letting your health team know about any Advance Care Planning wishes and documents.
    • Wherever possible, have someone with you.
    • Take a notebook and take notes (who saw you and what they said).
    • Ask about Risk versus Benefit for all treatments.
    • If your condition worsens while waiting for care – or while in care – tell your nurse!
    • Be assertive if you are being sent home without clear answers to your concerns:
      • What should you do next?
      • Confirm the ER report be sent to your GP so you can follow-up.
      • Then follow-up with your GP as soon as possible.
      • If your symptoms return, go back to the ER.
  5. Improve care and communication in hospital:
    • Wherever possible, have someone with you – this is especially important for seniors.
    • It bears repeating… be assertive – not passive and not aggressive.
    • Be assertive about letting your health team know about any Advance Care Planning wishes and documents. You might need to tell your healthcare team over and over who can speak for you and if you have decided on no heroic measures.
    • Take a notebook and document dates and times:
      • The names of all doctors who visit you: specialists, hospitalists (the hospital GP), and residents.
      • Make notes about recommended changes in care, medications, treatments, and surgeries.
  6. Discharge planning:
    You are likely to be discharged before you’re ready. The hospital will be planning for your discharge the moment you’re admitted, and you need to do the same thing.

    Doctors have little influence on when a discharge will take place!
    • Find out who will make the decision (bed control, a unit manager, social worker, occupational therapist, etc.) about planned discharge dates and keep following up.
    • Can you go home, and will you need home care support?
    • What other supports will you need to go home? Often the Occupational Therapist is the best person to discuss your home situation. The Social Worker is often the best resource if additional care or long-term care need to be considered.
    • Ask about any special equipment you will need (crutches, cane, walker, wheelchair, shower bench, hospital bed) and where you can rent or buy it. If the need for the equipment is temporary and you can’t afford it, ask your Occupational Therapist to sign a requisition to get an equipment loan from your local Red Cross (usually available for a maximum of three months).
    • How long until you will be assessed for services when you get home? What will you do until these services are put in place? Do you need to consider private home care services in the meantime?
    • Do you need to go into respite or residential care? In most areas, there is a profound lack of respite and long-term care beds. You will need to prove the need and why you can’t go home with home care supports.
    • If you are very concerned about the success of going home, ask for a “Discharge Planning Meeting.” The unit Social Worker or Occupational Therapist are often the best people to put together the meeting (but every hospital is a little different). Ask for the following healthcare professionals to attend:
      • Occupational therapist
      • Physiotherapist
      • Most Responsible Physician (MRP) for your care
      • The community care liaison.
    • Do you have the right equipment? Where do you find it? How can you get it installed?
    • Will a wheelchair fit through doorways? (An often overlooked and serious problem.)
    • When will home care start? What care needs to be provided in the meantime? Does any training of family caregivers need to be done before discharge?
    • What if home is simply not the appropriate choice? Then what? Is a rehabilitation unit an option for extra time to recover and get stronger? What does long-term care look like and how long will that process take?

We are available if you need individualized support as you navigate the healthcare system. Please contact us.