by Bag It Team | Nov 8, 2022 | Educational Articles
For many people, having a trusted friend or family member join them during a doctor’s visit or test (in person, virtually, or by phone) can be a great source of comfort and practical help. Sitting in may also bring you some peace of mind.
Besides being there for support and a second set of eyes and ears, you may also be that person’s advocate—gathering and sharing information with the healthcare provider, collecting information for them, and following up after the appointment to ensure continuity of their care. Knowing what to do before, during, and after a medical appointment can help safeguard the health and well-being of your loved one.
The Bag It Cancer’s Bag contains a nifty take-everywhere binder that was designed to help people get prepared for their medical appointments, keep track of information and records in an organized manner, and accompany them to each visit. Here are some of the tips from the binder.
Prepare for the appointment
- Set time aside with your family member or friend to discuss the primary purpose of the appointment. Is this a check-up? Follow up visit? Possible new medical condition? Together make a written list of questions, notes, or updates to share with the provider, keeping it to a single page and leaving room for the answers). This might include new symptoms, possible side effects of medications, or a new medical condition since the last visit. Also, discuss how they would like you to assist them during the appointment so you come to an agreement about your role.
- Star the three top priorities on your list to discuss in case you don’t get to all of them. Some people prefer to make an extra copy to hand directly to the doctor at the start of the visit.
- Gather everything needed for the appointment. Use Bag It’s My Companion Guidebook to store and record all your information in the tabbed sections and on the helpful patient forms. You will need:
- Day/date/time of the appointment. (Note that providers often ask you to arrive earlier to complete paperwork.)
- Name, address, phone number of the provider’s office.
- Driving directions if needed. If someone is attending virtually or by phone, make sure you have the log in or call-in details in advance.
- Insurance cards and copays due at the time of service.
- Copies of your medical records, including medical and family history.
- A notebook, pen or a recording device such as a smart phone with recording app.
- A complete and accurate list of current medications, vitamins/supplements, and over the counter medicines being taken.
- If lab work, tests, imaging, or other procedure needs to be completed so the doctor can review the results at your appointment, schedule them in advance and with enough time for the report to be available to the provider. Call to make sure the results have been received by the doctor’s office. Or pick up a copy of the results and bring it with you to your appointment, if needed.
- If communication with the provider will be difficult for the patient due to a language barrier, request that a professional interpreter be present during the appointment. Relying on a family member or friend to perform this role is not the best choice when complicated medical terms may be used to discuss the patient’s diagnosis and treatment options, or difficult treatment decisions may need to be made.
- If you decide to go online to research the patient’s disease or condition, avoid misinformation by visiting only reliable medical websites. Download our tips on how to evaluate medical websites. Always discuss with the provider any information you find online to make sure it is appropriate for your loved one and their situation.
The information and forms are just what is needed to assist with recording your cancer journey. The guidebook gives information to help explain and understand what to expect and record for the future. The bag helps you feel more comfortable speaking up for yourself by providing forms to write down questions and concerns which will help to explain at future doctor appointments.
During the appointment
- Introduce yourself to the provider if you have not met them and explain your role and who you are to the patient. If you will be attending appointments on a regular basis, begin to build your relationship as a member of the patient’s care team.
- If your loved one is unable or hesitant to actively communicate with their provider, speak up on their behalf early in the conversation if this is what was agreed to by you and the patient.
- Verify the doctor has received the results of testing or procedures completed since the last visit. Provide a copy of the results if they have not been received.
- Address the priority concerns and questions on your list. Be direct, honest and respectfully assertive when speaking with the provider.
- Listen carefully. Take notes and write the down the answers to the questions asked. Another idea is to record the conversation, with the provider’s permission. There are apps to download onto a smartphone, or use another recording device.
- Before the visit concludes, make sure any information relayed to you is well understood, including how to perform any medical tasks required at home. If not, ask for it to be explained again in a different way or using everyday language. Ask follow-up questions as needed. Repeating or rephrasing the important parts back to the provider are good ways to confirm you interpreted the information correctly.
- You can also ask for information to be provided to you in writing so you can refer to it at home. This is especially helpful for instructions on how to perform home care tasks.
- Review the patient’s current medications. Understand why any new medications are being prescribed, and make sure you are clear on how, how much and when the medicine should be taken to avoid medication errors.
- Find out the best way to communicate if a non-urgent matter arises between visits. Some offices prefer a message sent through the portal, some use email, and some will ask you to call a specific member of the health care team. If your loved one agrees, consider giving the provider your phone number and/or email as another point of contact.
- If there wasn’t enough time to address all the questions and concerns with the doctor, ask if a nurse or other member of the healthcare team can help you further that day, or follow up with you after the visit. You can also ask to make another appointment to continue the conversation.
- Request copies of any test results, reports or other medical records related to the appointment if not given to you automatically. If they are available online through the patient portal, confirm you have the correct URL for the website and instructions on how to set up a user name and password.
- Before leaving the office make any follow up appointments needed, if possible. Be sure any orders for lab work or other testing or procedures are given to you or sent electronically to the medical facility. This also includes any referrals to other providers.
After the Appointment
- Recap the visit with your loved one. Finish writing any notes or instructions you didn’t jot down in the office. Listening to the recording of the visit would be helpful here.
- Update the patient’s file with any new reports, test results or other documents you received during the visit. Download and print a copy to file if they are online in the patient portal.
- Fill all prescriptions promptly. Verify the pharmacy has a complete and accurate list of all the patient’s medications to avoid drug interactions. Report to the doctor any new symptoms or side effects that could be related to new medicines the patient is taking.
- If any lab work, tests or procedures, or referrals to other doctors were ordered during the visit, schedule these appointments in a timely manner. Ask when and how you will receive the results. Be sure to follow up with the office if you do not receive the results within the expected time frame –do not assume “no news is good news.” If you do not understand the results, reach out to the provider’s office for an explanation of what they mean.
We hope that these tips guide both you and your loved one to better health and more peace of mind.
by Bag It Team | Nov 22, 2020 | Blog
Author: Jenna Frinfrock
When Bag It announced the creation of the virtual Tribute Garden this past spring, I knew I needed to show my support by paying tribute not only to my dad, but also to his oncologist. In 2009 my father was diagnosed with advanced stage-four multiple myeloma. It was a terrifying diagnosis, followed by weeks of radiation treatments, months of chemotherapy medications, and a final successful stem cell transplant. Through it all, my dad had the good fortune of being a patient of Dr. Michael Boxer’s at Arizona Oncology. Not only did Dr. Boxer patiently answer all of our questions, he took the time to know us personally and encourage my dad throughout his treatments in the years following his original diagnosis.
I truly cannot imagine what we would have done without the reassuring kindness and medical expertise that Dr. Boxer offered at every visit. Over the course of the last ten years, Dr. Boxer was instrumental in allowing my dad to beat back his cancer into remission and enjoy years of family gatherings. Because of Dr. Boxer’s care, my dad was able to attend family BBQs, celebrate holiday dinners and enjoy weekly zoo trips with his four grandchildren.
We all know that familiar adage, “it takes a village to raise a child.” I believe the same can be said when it comes to supporting someone with cancer. I will forever be grateful for the role that Dr. Boxer played in “our village” as he oversaw my dad’s care and treatment for ten years. It was a privilege for me to submit a tribute on his behalf when he retired from Arizona Oncology in June of 2020 after a very prestigious and inspiring career.
Check out the Virtual Tribute Garden here. It’s a place where you can recognize those touched by cancer.
It’s a wonderful time to show your thanks to a medical provider, caregiver or friend.
by Annettra Farrington | Nov 12, 2020 | Educational Articles
Caregiving Across the Miles
A long-distance caregiver lives an hour or more away from someone who needs care. Your support could take many forms such as connecting by phone, texts, emails and virtual visits, doing research, navigating insurance or finances online, managing the household from afar, coordinating in home care or services, visiting to relieve a primary caregiver, keeping extended family and friends in the communication loop, or even helping with expenses. Even if you can’t be there in person, your role is important and there is much you can do for your loved one no matter where you live.
Whether you are a new caregiver or have been in this role for some time, these suggestions can make life a little easier for everyone:
- Learn about your loved one’s specific cancer type (and/or other diseases), their medications and their treatments.
- Ask your loved one and any other caregiver(s) what you can do to help.
- Learn about your loved one’s specific cancer type (and/or other diseases), their medications and their treatments. This will help you to anticipate what to expect, enable you to communicate knowledgeably with your loved one, other caregivers, and the healthcare team, as well as assist in future decision making. Before hopping on to Dr. Google check out these tips on how to do research safely online and evaluate the credibility of the websites you source. The Resource Center on the Bag it website features a list of resources for every cancer type and any cancer topic.
- Ask your loved one and any other caregiver(s) what you can do to help. Communicating long-distance, even with text and email, is not the same as being there and can be even more challenging. It’s important that conversations are frank and clear. Actively listen to their stated needs and preferences and follow up with questions to be sure you understand. Together, create a checklist of what needs to be done (click here for examples). Be flexible. Keep in mind that your loved one’s condition will change and adaptations will be necessary as time goes by.
- Build a team of caregivers if it does not already exist. Take into account what everyone’s individual strengths, interests and limitations are when coordinating who will do what, from where and when. Your loved one should be a part of this important process, if possible.
- Get organized. Bag It’s My Companion Guidebook is a perfect tool to keep everything in order and in one place. Use it to store medical info, health care and personal contacts, reports/scans/labs, calendar items, insurance info, notes and questions for the doctor, track side effects and symptoms, and much more. The handy forms can be filled in by hand or use the fillable PDF format to print, save and update later, and share electronically with others as you see fit. Find the forms here. Maintaining this information and all the paperwork on an ongoing basis will make this an easy go to reference for caregivers and doctor visits alike.
- Offer to join your loved one’s doctor appointments virtually. The pandemic has greatly expanded the ability for health care systems to easily include caregivers by phone or video conferencing during in-person or virtual office visits.
- Gather information about local resources where your loved one lives. Programs and services that assist with in-home care, meals, medical equipment and aides, transportation and other needs may be available to fill some gaps or ease caregiving responsibilities of a primary caregiver.
- Being a long-distance caregiver brings its own unique challenges, stress and other emotions, particularly when for an extended period of time. Have your own support system in place and connect with people who understand what you are going through. This could be a caregiver support group, online community, a counselor or even a friend who has also been a caregiver.
More tips for Long-Distance Caregivers
- Consider a medical alert system if there is not a caregiver in the home at all times.
- New to caregiving? Consider attending caregiving training available through your local aging agency, AARP or other business in your local community or online. This specialized training can include helpful skills such as first aid, physical care and safety, assisting with activities of daily living, and other ways that you can be an effective caregiver in person or from afar.
- As a caregiver you may be eligible to take unpaid leave from your job to care for a family member under the Family and Medical Leave Act (“FMLA”). Learn about your rights here and check with your employer regarding potential coverage and FMLA policies related to your job.
- Check this list of apps available to help manage many aspects of caregiving.
- Pack a travel bag in advance and prepare your own household in the event you need to leave quickly for a few days to attend your loved one.
Helpful Tips for When You Visit Your Loved One
- Plan your visit to identify what you want to assess and what you hope to accomplish from a practical standpoint, but don’t forget to also set aside dedicated time to enjoy each other’s company. Do things that are fun and relaxing that are not focused on caregiving or a “to do” list. (These hours could be the ideal time to give the primary caregiver a much-needed respite for a few hours or day or two if you can swing it.)
- If possible, accompany your loved one to their in-person doctor appointment. Use the Bag It form My Appointment Summary Log form to note the appointment details and write down the questions to be asked (and answers received).
- During the appointment, get your loved one’s permission to allow the healthcare team to share medical information with you and get the necessary paperwork signed along with a copy for yourself. Exchange your contact info with the health care team and discuss the best method for future communication together.
- Hold a meeting with your family/caregivers. You bring a fresh perspective and may observe things that a primary caregiver does not notice day-to-day. Continue to listen carefully and be aware that other caregivers are also under tremendous pressure so emotions can run high. If you offer suggestions for more help, be specific about the types of support you are proposing. For example, having a home health aide come in each week, hiring help with yard work or other household maintenance, having groceries or prepared meals delivered, or arranging for transportation for medical appointments.
- If not already completed, start the conversations with your loved one and the other appropriate people to have a healthcare power of attorney and a durable power of attorney completed in the event your loved one becomes unable to speak or make decisions for themselves. While these topics can be sensitive and more than one discussion may be needed, executing these documents ensures that your loved one’s wishes will be followed. Advance health care directives are also a tremendous help for the medical team and others potentially making decisions on your loved one’s behalf if needed in the future.
- Take care of yourself during visits to your loved one. Get plenty of rest and set aside some time to recharge so you can be your best self with them. Remember you will not solve all the problems and have all the answers but your support, assistance and presence will no doubt mean a great deal to those you care about.
Additional Caregiving Resources:
Caregiving from a distance
Eldercare locator: Find local caregiving and support resources in your community
ASCO Answers Caregiving booklet
Family Caregiver Alliance Handbook for Long-Distance Caregivers
American Cancer Society Cancer Caregiver Resource Guide
AARP Prepare to Care guide
Family Caregiver Alliance Handbook for Long-Distance Caregivers
State by State Advance Directives: