Acting as Caregiver-Patient Advocate

Canadian patients have the right to treatment, urgent care, diagnosis, coverage, and appeal if you think rights have not been respected. It is the care recipient’s (and often the caregiver’s) responsibility to provide accurate information to his or her health care team, follow treatment plans and ask questions to ensure he or she understands the information being shared.

Primary caregivers are often present at appointments with health professionals. While it’s important to respect the care recipient and his or her independence, you can also act as caregiver-patient advocate:

  •  You can interpret information (both from the care recipient to the health professional and vice versa)
  •  You can provide information to the medical team
  •  You can learn about newly prescribed medicines and their potential interactions with other medications
  •  You can familiarize yourself with new procedures
  •  You can do your own research (see the McMaster Optimal Aging Portal), so that you can help the care recipient make educated and informed decisions.

Remember: the care recipient may feel that you are stepping on toes by speaking for him or her. When acting as an advocate, always ask the person in your care how they want you to advocate for him or her. For example, is the care recipient comfortable speaking with medical professionals? Does he or she speak the language? Does the care recipient have specific questions but feel too intimidated to ask them? When would he or she like you to step in?

These questions and conversations are critical for creating a positive caregiving and receiving relationship, and to ensure you are both aligned. After all, you are a team in this.

When the person in your care needs urgent medical care, being organized is essential. Create a folder or envelope that is filled with critical information that will be useful to emergency room staff, paramedics and clinicians. This folder should be given to paramedics and brought with you to walk-in clinics, urgent care clinics and the emergency room. Don’t leave home without an emergency file folder.

Here’s what to include in the folder:

  •  a list of all prescription and over-the-counter medications, as well as supplements. Include their dosages. This will ensure there are no negative interactions if the care recipient is given medication.
  •  a list of allergies, including the severity of reactions to the allergies.
  •  a description and dates of diagnoses, including medical history and emergency medical events.
  •  the name and contact information for the care recipient’s primary care physician, in addition to the names and contact information for any specialists they may be seeing, such as a cardiologist or gastroenterologist.
  •  insurance cards and related information
  •  either original photo identification or a photocopy of the care recipient’s identification
  •  legal documents, such as Do Not Resuscitate (DNR) orders and medical power of attorney documentation

Activity: Caregiver Action Plan

You may have already recorded most, if not all of this information in sections 1A, 1B and 2A of your Caregiver Action Plan. Once you have it complete, it’s a good idea to make two copies of this information – one for your main Caregiver Action Plan binder, and the other for your emergency folder. Keep your emergency folder in a plastic freezer bag for portability, and so it can easily be filled with other small items and documents that you may need in the event of an emergency.Sample Questions to Ask The Doctor

Having an emergency medical folder is a great idea to bring with you to general medical appointments as well. During appointments, do not be afraid to take notes. We often forget what we are told during appointments – whether we are the patient or the caregiver! Below is a list of questions from the Health Charities Coalition of Canada that you may wish to ask on the care recipient’s behalf (or provide the care recipient with so he or she can ask):

  •  What do you think is wrong with me? What is my diagnosis?
  •  Do I need to have test(s)? If so, when will I have the test(s)?
  •  What is the reason for the test(s)?
  •  When and how will I get the results from my test(s)?
  •  What are my treatment options?
  •  What are the next steps?
  •  Does the hospital, clinic, medical office, etc. have a social worker or patient advisor that can help me to better understand the next steps?
  •  Do you have any patient information sheets or brochures that I can read to educate myself?
  •  Where can I get more information about my condition?
  •  Is there information to help members of my family understand what I am going through? Is there support for them?
  •  Is there a health charity or support group I can contact for my particular disease or condition?
  •  Is there a self-management program that I should attend?
  •  Who should I contact/where should I go if I start to feel worse?

How to Ask for a Second Opinion

Don’t be afraid to seek a second opinion about the health of the person in your care. A second opinion may help your care team to understand more about certain conditions, gain a different perspective on treatment options, and provide reassurance or peace of mind that you’re making the right treatment option. Many patients and caregivers worry about telling their doctor they plan to seek out a second opinion, but, particularly in the case of a serious diagnosis, most doctors are comfortable with this request.

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