Lung Cancer

Caregiving

As a caregiver, you’ll be essential in explaining and relaying information to the medical team. Your loved one may be overwhelmed with the reality of receiving a cancer diagnosis and making treatment decisions, so the communication will often fall to you.

Following are suggestions for making a communication plan. Keep in mind, you don’t have to take on these and other responsibilities alone. Many resources are available to help you, such as online resources and support groups for caregivers.

Determine key points of contact. Introduce yourself to the patient navigator, case manager, social worker and oncology nurse. Meet individually with these essential team members as early in the process as possible. They are experienced in coordinating care between multiple doctors and can connect you with resources at your cancer treatment facility and in the community. Make them your primary contacts for help, insight and guidance in navigating through the health care system.

Create a contact list. It will be very important to know the best way to reach your key contacts. They usually are not listed as providers within an electronic patient record, so you may be communicating via email, phone, voice mail or text message. Ask for a business card and their preferred communication method. Also inquire about the best time of day to reach them.

Assist with legal issues. Help your loved one set up an Advance Medical Directive, a Durable Power of Attorney for Health Care (also known as a health care agent or proxy) and a Living Will. Some lawyers may offer to do this pro bono for someone with cancer.

Sign appropriate forms. Make sure paperwork has been signed authorizing each doctor’s office to share health information with you. Ask your loved one to sign forms giving you access to the electronic patient record the health team uses so you can see appointments, request prescription renewals, send questions to various members of the team and view test results.

Note important information. Start a journal noting the date, name and details of each interaction, including phone calls. This will document what was said, when and by whom; what actions were agreed upon or promised; and any issues that weren’t resolved or need follow-up. Always keep this journal and a pen nearby. It will be an important reference and can also be shared whenever family members have questions

Attend medical appointments. Write down questions to bring with you, and take notes during the visits. If you cannot attend an appointment, request to be included by speakerphone. Most doctors allow the patient or family member to record the consultative visit, so ask about this option, too. (When under stress, we may only retain a small percentage of what was told to us. Being able to listen to a recording later is far better than guessing.)

Track symptoms. It is often difficult for people undergoing cancer treatment to accurately remember and describe symptoms to their doctors. Keep a notebook on hand to record symptoms. Note when they begin, how long they last and if anything makes them better. Before treatment begins, find out what symptoms or side effects require a call to the doctor, a visit to urgent care or emergency medical attention.

 
A Caregiver’s Checklist for Medical Visits
Appointments often feel overwhelming because there is so much new information. You can make the experience more positive and productive for your loved one with the help of this checklist.
Before The Appointment
Preparing the day before will reduce stress for you both.
  • Confirm date, time and directions to the facility.
  • Make a list of questions.
  • Identify symptoms; summarize concerns.
  • Update medications list.
  • Note contact information for all physicians and key contacts.
  • Gather medical files, ID, insurance cards, medications list, etc., to take with you.
During The Appointment
Encourage your loved one to take the lead.
  • State main concerns first.
  • Help accurately describe symptoms.
  • Note/record doctor’s instructions.
  • Ask questions; state any other concerns.
  • Discuss recommendations.
  • Ask when to seek immediate medical attention.
  • Verify next steps.
Before Ending The Appointment
Confirm that you’re authorized to receive the patient’s information
  • Make follow-up appointments.
  • Verify you’ve received all instructions, prescriptions, referrals, etc.
  • Ask how/when you’ll get lab or test results.
  • Request after-hours contact information, if needed.
  • If your loved one’s care facility has an electronic patient record, request access and ask how soon new information is posted .
After The Appointment
Immediately stress positive aspects of the appointment
  • Discuss the visit, referring to your notes.
  • Give your loved one space to process the information.
  • Make a plan together to implement the doctor’s recommendations.
  • Pick up prescriptions and OTC medications.
  • Update loved ones (if applicable).
  • Update calendar with new appointments.

 

Previous Next

 



Register Now! Sign Up For Our Free E-Newletter!

Read Inspiring Cancer Survivor Stories

Order Your Guides Here