Key takeaways
- Preparing questions and staying organised can help you and the person you are caring for make the most of appointments with the healthcare team
- Don’t hesitate to ask difficult or personal questions, with permission from the person you are supporting, and to follow up if needed.
- Bringing a third person along for support and taking notes can help you remember important information and feel more confident making decisions
- One of the most important aspects of treatment discussions is understanding the goal of the recommended treatment
As a carer for someone with cancer, you play a crucial role in supporting your loved one through their treatment. Engaging with the healthcare team and ensuring that you fully understand the treatment plan is essential, while keeping notes and records will help you both as treatment progresses. In this article, Perci’s cancer nurse specialists share some practical tips to help you navigate these discussions and make the most of each interaction.
1. Prepare your questions
Before attending appointments, take the time to prepare a list of questions. This will help you stay focused and ensure that you cover all the questions that are important to you and the person you’re supporting. These questions might include:
- Why is this the best treatment?
- When will treatment start?
- How long will treatment take?
- What are the possible side-effects?
- How will the treatment affect everyday life?
- Where will they need to go for treatment?
Keep a notebook handy to jot down questions as they arise. You might consider downloading or using a free organiser tool to keep everything in one place. This preparation can help you make the most of the often limited time you have with healthcare professionals.
2. Keep notes during appointments
It’s easy to feel overwhelmed by the amount of information provided during medical consultations. Taking notes can help you remember what was discussed and allow you to review key points later. Some people find it helpful to record consultations (with permission) using a voice recorder or smartphone, so they can revisit the conversation if needed. Additionally, ask for copies of any documents or test results shared with your GP to ensure you have all the information at hand.
3. Don’t be afraid to ask difficult questions
Some topics, such as side-effects, long-term impacts or personal issues like sexual health, might feel uncomfortable to address. However, these are important aspects of your loved one’s care. Remember that healthcare professionals are experienced in discussing all kinds of issues and are there to help. If you’re unsure about something, don’t hesitate to ask – they have likely dealt with similar questions before. It is also worth considering how to give your loved one space and time with their healthcare team on their own.
4. Bring support to appointments
Having a third person with you and the person you’re supporting during appointments can be helpful. Whether it’s another family member, a friend, or even an advocate, an additional person can help by taking notes, asking questions, or simply providing emotional support. Advocates are people who can act as a spokesperson for you. Independent of social services and the NHS, they can also assist in understanding information and making decisions about care. You can contact your local council to ask them about advocacy services.
5. Follow up if needed
You don’t have to get all your questions answered in one go. If new questions arise or you need clarification on something that was discussed, don’t hesitate to follow up with the healthcare team. Your key worker, often a clinical nurse specialist, should provide you with their contact details for any follow-up questions or concerns. Remember, it’s okay to ask for further explanations or to arrange additional meetings if needed.
6. Understand the goal of treatment
For many people the most important aspect of treatment discussions is understanding the goal of the recommended treatment. You may want to ask the doctor why they are recommending a specific treatment over another, what the benefits and risks are, and how the treatment might impact your loved one’s daily life. Understanding the treatment plan will help you and the person you’re supporting make informed decisions and prepare for what lies ahead.
By taking these steps, you can feel more confident and equipped to support your loved one through their cancer treatment, ensuring that their needs are met and that you both are fully informed throughout the process.For more in-depth information and additional resources on how to engage with your loved one’s healthcare team, visit Macmillan Cancer Support.
While we have ensured that every article is medically reviewed and approved, information presented here is not intended to be a substitute for professional medical advice, diagnosis, or treatment. If you have any questions or concerns, please talk to one of our healthcare professionals or your primary healthcare team.
References:
‘Questions to ask your healthcare team,’ Macmillan.org.uk, July 2023, https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/questions-to-ask-your-healthcare-team
‘Helping Your Loved One Make Treatment Decisions,’ cancersupportcommunity.org, Feb 2021, https://www.cancersupportcommunity.org/sites/default/files/fsac/Making_Treatment_Decisions_Caregivers_Booklet.pdf