Caregivers and Cancer: Advanced Cancer

As a caregiver, you likely help make decisions about your loved one’s care. This may mean deciding on hospitals or healthcare providers. It also may mean choosing treatment options.

But because advanced cancer is unlikely to be cured or controlled, you may now face a new set of decisions. You and your loved one may be asking:

• Should new care options be considered?
• Will this care option have serious side effects?
• Does this option ease symptoms or slow the spread of cancer?

Asking these questions doesn’t mean you and your loved one are giving up hope. It just means that the goals of your loved one’s cancer care may have changed.

Everyone manages advanced cancer in their own way. Some may want to continue pursuing treatment options such as chemotherapy and radiation. Others may want to shift their focus from treating the cancer to maximizing their quality of life. To decide on the best option:

• Talk openly with your loved one. Ask them what they want at this stage. If you disagree with their decision, try to understand their perspective before you respond. Respect how they feel. It’s important they know they are in charge of what happens to them.
• Ask their healthcare team about what to expect. Knowing what’s to come will help you and your loved one prepare.
• Discuss financial details with their insurance provider. This can be challenging to address. If you can, ask a family member or friend for help.

Remember to keep talking about care options—it should not be just a one-time discussion. Your loved one may change their mind, or one approach may no longer be the best option. Cancer care is a complex and evolving process.

You and your loved one may have a range of options to consider. These may include:

• Clinical trials. People with advanced cancer may be able to participate in new clinical trials. These trials test new medicines, procedures, and other treatments. If your loved one decides they want to do this, it’s important to talk with their healthcare team about what to expect.
• Palliative care. This approach focuses on the management of symptoms to help improve quality of life for a person at any stage of a serious illness. In advanced cancer, this is an important consideration. Everyone has a right to comfort and quality of life at every stage of their care. Palliative care can be used alongside other cancer treatment.
• Hospice care. Hospice care aims to provide your loved one the comfort they deserve at the end of the treatment journey. This means pain relief, comfort, counseling, and other services. When receiving hospice care, other treatments aimed to cure the cancer are stopped. The focus shifts to your loved one’s comfort and quality of life.

Many people choose more than 1 of these options. Talk with your loved one’s care team about what would help them the most. Know that Medicare, Medicaid, and most private insurance companies cover hospice services. If you need any financial help, visit the National Hospice and Palliative Care Organization to review aid options.

It can be tempting to say whatever you think will comfort your loved one and to stay overly positive in a difficult situation. You may feel compelled to say things like “You can beat this!” These reassurances come from a place of deep love. But it may not be what they want to hear.

Instead, considering saying something like, “It must be hard to come to terms with all this.” As difficult as it is, it’s important to be both reassuring and realistic.

Helping a loved one through advanced cancer can be exhausting. You may also feel like you’re the only one who can really fill the caregiver role for your loved one. But while you play a big part in their care, know that you don’t have to do everything alone. Asking for help is not a sign of weakness. It will not only benefit you but may also benefit your loved one. Consider asking friends and family for help with:

• Household chores, like cooking, cleaning, yard work, and childcare
• Driving your loved one to appointments
• Picking up prescriptions
• Helping you find and track important information
• Keeping other people in your support network in the loop
• Making living arrangements for you or your loved one
• Putting your loved one’s affairs in order

Caregivers often disregard their own feelings because they believe they’re less important than what their loved one is going through. But it’s vital to remember that caring for yourself helps you care for your loved one.

Self-care is anything that makes you feel good. You can:

• Take a nap
• Exercise
• Practice a hobby
• Go for a drive or walk
• See a movie
• Read
• Listen to music
• Join a caregivers support group in person or online

Self-care also doesn’t have to mean being alone. You can take care of yourself while also spending time with your loved one. For instance, you can also:

• Make a scrapbook together
• Watch a movie
• Read or write poetry
• Write notes or letters to friends and family members
• Make a video of special memories
• Write or record meaningful stories from your shared past

This time in your loved one’s life, as well as your own, can at times feel insurmountable. But even if you can’t take your loved one’s cancer away from them, there are things you can do to comfort them. Think about seeing a mental health professional or talking to your own healthcare provider if you need extra support. And remember that you have a support network of people to help both you and your loved one find some peace.