Tell your oncologist

If you have a serious health condition such as cancer, it is important for you, your caregiver, loved ones and healthcare team to have what we call " Serious Illness Conversations", to better understand what matters to you.

Serious Illness Conversations to help you live well with your cancer.

(Credit: iStock.com/CandyRetriever)

1. What is a Serious Illness Conversation and who should I have it with?

Serious Illness Conversations are conversations that are held early and often during your illness journey, so that you, your family and your healthcare team can make more informed and empowered decisions that consider what is important to you, to help you live well with your cancer.

During these conversations, you should share with your healthcare team your priorities, concerns, and potential trade-offs you’re willing to make in order to prioritise what is important to you throughout your health journey. It is important to engage in this shared decision-making process as your healthcare team want to put you at the centre of this process.

What might some of these topics include?

Examples of priorities may include:

• Preserving fertility

• Remaining mobile during the cancer journey

• Being independent and not needing full time care

• Having good symptom control

• Being able to communicate meaningfully with your loved ones

Examples of concerns may include:

• Whether treatment side-effects will impact your quality of life

• Cost of treatment and whether this may drain family finances

• How much time you need to spend on having treatment in clinic and in hospital

Examples of trade-offs may include:

• Willingness to undergo more aggressive treatments to improve chance of recovery or control of cancer

• Preferring to take treatment that may not be as effective but causes fewer side-effects and enables you to continue working or doing activities important to you

There is no limit to the topics and concerns that matter to each individual, so it is best to think about what matters to you and write it down when you have these conversations with your loved ones and care team.

2. How and when can I start and have these conversations with my treating doctor?

These important conversations should happen throughout the care journey. Ideally, they should be held as early as at diagnosis, and revisited often as what matters to you may change as your condition changes. They should provide clarity to you and your families and enable doctors to prepare you for possible future scenarios and help guide decision-making.

Here are some questions (adapted from here) you can ask yourself before starting to have serious illness conversation with your doctor:

1. What do I understand about my condition?

2. What is most important to me?

3. What am I willing to go through to have more time?

4. Is there someone who understands what matters to me, if I can no longer speak for myself?

Patients with a serious illness may want to spend more time with their children to make memories with them.

(Credit: iStock.com/zhanghaoran521)

Susan was a young female patient who had been diagnosed with metastatic breast cancer in her 40s. She was married with young, school-going children.

Early in the course of her illness, she shared with her oncologist that she wanted to her appearance to remain as normal as possible, for the sake of her children. This helped her clinician to choose what the best chemotherapy drug was for her.

As time went on, Susan shared that it was really important to her that she be able to spend more time at home with her children, rather than in the hospital. She wanted to spend time making memories with them, even if it was doing mundane tasks like studying for exams!

Her oncologist understood this and arranged for more support to deliver treatment and perform blood checks in the community, so that Susan would not need to spend as much time in NCCS or the hospital. Susan was glad she had shared what she prioritised as she could now spend more time with her loved ones.

3. What are the goals of having these open conversations?

Having a serious or life-limiting illness can make people feel like they have no control over what happens to them. Open conversations give you and your family an opportunity to gain some control during this period by taking a step back and reflecting on what is important so that your care and treatment plans best align with your values and personal preferences.

For example, when younger patients are diagnosed with cancer, the first instinct might be to start treatment right away to give them the best chance of a good outcome. However, if fertility preservation is their priority, it is important for their loved ones and care team to be aware so that plans can be made. Delaying the start of treatment may seem counterintuitive, but it allows the patient to go through the cancer journey after fertility preservation without regrets.

Having these conversations also gives you the space to be honest about what you want, share worries and speak openly on what you are willing to give up or not, when considering treatment options. The aim is also to take the pressure off family members and spare them from having to guess about what matters to you if the time comes when you cannot speak for yourself. Crucially, they give your care team important insights into who you are so that better care decisions can be made together.

4. How are these conversations different from Advance Care Planning?

Advance Care Planning is a discussion about future care and treatment preferences should your illness gets worse, and you are unable to speak for yourself. Such discussions usually evolve around preferences on resuscitation and life prolonging measures, as well as preferred place of care and death.

5. I find it difficult to have these conversations, because I don’t know what to say or am afraid to talk about the future. How can I overcome this?

Having Serious Illness Conversations are a way of expressing how you want to live.

(Credit: iStock.com/Ton Photograph)

As a patient, having these conversations may seem scary, especially if you associate it with death. It is more helpful instead, to think about these conversations as a way of expressing how you want to live. It enables you to receive personalised care that is directed at who you are and your preferences, rather than just treating the disease.

6. Where can I find other resources?

You can refer to these websites for more information:

• 7 Keys for navigating a life-changing diagnosis

• Ariadne Labs Serious Illness Care Resources, Tools and Guides

Tell your oncologist what’s important to you