STEP 1 - THE PATIENT CHOOSES 5 CORE PATIENT SUPPORT ROLES: CarePartner, Scribe, Medical Advocate, Spiritual Advisor, and Communicator.
The patient reviews each role page and lists any close friend and/or family member whose talents, skills, personalities and backgrounds match each role, choosing whom he/she would prefer support him/her in each role. Since these five roles provide direct personal support to the patient, from the beginning and throughout the medical journey, the patient ALONE gets to say WHO plays each role − or doesn't play any role.
The Patient should choose the CarePartner first. Your CarePartner will be your companion throughout your entire medical journey, supporting you in feeling empowered right from the beginning, as you navigate tests and specialists, during the initial treatment decision phase, during any treatments you chose, and being a champion for you and your wellness any time you ask. Before choosing the person who plays this key role, the patient should use the Choosing Your CarePartner Quiz to see what characteristics make a friend or family member best at playing this role and which will most likely match how you like to be supported.
Once the patient has chosen this lynchpin partner, the patient should invite the individual personally. Begin by describing what the role involves, explaining why you asked him or her (what you saw as this person's particular gift that made them your choice as CarePartner). Be prepared to graciously accept their answer, regardless if it's "Yes," or "No." However, if their only concern is the fact that they live at a distance, and this person is the one you most want to be your companion on your journey, ask if they'd be willing to play the role, using the telephone for support, until your perfect close-up CarePartner shows up. This is where roles are important. Best friends at a distance can often serve in a combined role as both Spiritual Advocate and CarePartner, using the telephone, especially at the beginning of the patient's journey,
If the person you chose still says no, and you have no second choice in mind, ask this person who they would pick in your circle of family and friends if they had to choose a CarePartner for themselves. As your best friend or favorite family member, s/he is likely to know your preferences in how you like to be supported and to have similar tastes in friends.
Choose these 5 Roles (in this order, if possible):
The Care Partners Role: Your CarePartner will be your companion throughout your entire medical journey, supporting you in feeling empowered right from the beginning, as you navigate tests and specialists, and during the initial treatment decision phase, supporting you during any treatments you chose, helping set up an at-home recovery team if you need one, and standing for you and your wellness any time you ask.
- Will help you pick the rest of your Core Team in the beginning, if you need help.
- Can help you brainstorm, as you prepare for (using Scribe's note and your Medical Advocate's input) making shared decisions with your medical team among various treatment options.
- Can accompany you if you request, to any doctor's appointment in which you need extra moral support or are too weary to fight.
- Helps you predict (once you have a treatment plan in place) what practical at-home help you will need to support you and your family during prolonged treatments (chemo or radiation) and/or during at-home recovery after surgery. Then your CarePartner will help you prepare a wish list of possible tasks you and your family may need help with during that time.
- Helps you generate a list of acquaintances using the patient's email address book, helps you classify which ones you want intimate contact with and which you want kept at a distance, and finally makes the ASK on your behalf, so you don't have to talk with a large group of people while you are in the throes of your treatment.
- The CarePartner working with the scheduler will email the wish list, outlining the daily life tasks the patient will need help with during recovery or long term treatment. Either or both will also manage replies, set up a scheduling or calendar system to mange them during the recovery, and handle communications with the Brigade volunteers, so you only have to communicate if you want to or are up to it.
Visit the CarePartner web page for more information, plus useful forms and web links.
Scribe's Role: Will accompany you to every doctor visit and take/transcribe accurate notes, and to help you generate questions before each doctor's visit. This Role is a crucial one especially during the first appointments in your medical journey.
- Visit the Scribe web page for more information, plus useful forms and web links.
Medical Advocate: Can help you understand or translate unknown medical terminology, research your disease in reliable sources, or locate information you need to know or clarify in order to make informed treatment choices, and even act as a patient advocate or family consultant during hospitalizations, or serious medical incidents.
- Visit the Medical Advocate web page for more information, plus useful forms and web links.
Spiritual Advisor: Can help you identify and use personally uplifting "spiritual" self care practices (music, mediation, etc.) to use when your body is exhausted and your mind is worried, to promote relaxation and healing, and keep your spirit strong.
- Visit the Spiritual Advisor web page for more information, plus useful forms and web links.
Communicator: Can write (on your behalf) and send updates as to your medical progress to your family, friends and volunteers, while being sensitive to how much you want shared with each category of reader.
- Visit the Communicator web page for more information, plus useful forms and web links.