Why is it important to talk with the patient's healthcare providers?
Please note: The patient will need to give permission for his or her healthcare providers to speak with you.
If you stay in touch with healthcare providers treating the cancer, you’ll likely have a better understanding of the disease and treatment. You’ll be better able to help the patient make decisions and better able to anticipate his or her needs. Many caregivers administer medication injections and other treatments thus, discussion with healthcare providers is important.
What do I need to know about the patient’s disease and treatment?
Depending upon the level of caregiving you’re providing, you may need to know:
- The diagnosis, including the stage of the disease and expectations about your loved one’s disease and treatment.
- Medicines the patient is receiving (medication name, dosage [how much], and frequency [how often/timing]).
- Possible side effects of treatment, how to manage them, and how they may change over treatment.
- How long the treatment will last.
- Changes in symptoms and stage or progression of disease.
- How the patient is expected to respond to treatment.
- Risks and benefits of treatment.
- Other treatment that might be available, like clinical trials.
- When you should call the healthcare provider - what is the level of severity of a problem that requires immediate attention.
- Where/who to go to get more information.
- Where you can get support.
- Who you should call when you have questions.
- That you and your loved one can take as much time as needed to make informed decisions.
- If there is written information you can have.
How do I talk with the patient’s healthcare providers?
Many people have a hard time talking with doctors and other healthcare providers. You may feel your questions are foolish or silly. You may be afraid that if you report too many things, the provider will stop treatment. You may not be sure who to ask about what.
Here are some tips on talking with healthcare providers:
- Work with your loved one to write down all the questions you both have before the visit.
- Be frank and ask clear, specific questions.
- If your loved one is able, let them speak first.
- Take notes during the appointment, and/or ask for permission to record the conversation.
- Repeat what you hear and ask if you understood what has been said.
- Take someone with you when you get information from providers so they can also listen to what is said.
- Try to learn which staff members give different kinds of information - so you know where to get answers. For example, "Who can tell me when my family member/friend will be discharged?", or “who can tell me what treatment expectations are?”
- If you are concerned with the way something is going, tell the provider! He or she can only help if he knows there is a problem.
- If you don’t understand what the provider has said, ask them clarifying questions or ask them to explain it to you again using simpler terms.
- Talk about any physical, emotional or financial problems the patient is having that may get in the way of his or her treatment.
- Present what you need and what you want - use specific clear “I” statements.
- Be sure you learn and understand the reason why your loved one takes each medication.
- Ask for copies of doctors' notes. You have a right to this information, and it's a good way to make sure you are following the care plan.
- Some questions that you can ask: What is likely to happen during and after treatment? What is likely to happen without treatment? What types of long-term care can we expect?
If there is an emergency, call 911. If you’re not sure if it’s an emergency, call your provider, tell them what’s happening, and ask what to do.
Be sure to share any symptoms the patient is experiencing. Be specific.
- What is happening?
- How often?
- How long have the symptoms been going on?
- What makes them worse or better?
- How severe are they on a scale of 0-10 (where 0 = no symptom and 10 = worst imaginable)?
- Are they getting in the way of any daily activities for the patient?
This Crisis Symptom Reporting Guide is another useful resource.
- American Heart Association. (2021). Communication Tips for Caregivers. https://www.heart.org/en/health-topics/caregiver-support/communication-….
- Smith, P. D., Martin, B., Chewning, B., Hafez, S., Leege, E., Renken, J., & Smedley Ramos, R. (2018). Improving health care communication for caregivers: A pilot study. Gerontology & geriatrics education, 39(4), 433–444. https://doi.org/10.1080/02701960.2016.1188810
- Wittenberg, E., Kerr, A.M., Goldsmith, J. (2021). Exploring family caregiver communication difficulties and caregiver quality of life and anxiety. American Journal of Hospice and Palliative Care, 38(2):147-153. doi: 10.1177/1049909120935371