The majority of people with a high grade glioma diagnosis may eventually be told that no more antitumour treatment should be used. This decision is not made lightly by doctors, and is always made in the best interests of the person involved.
Some people may be too unwell or frail to have further cancer treatment (chemotherapy, radiotherapy, or surgery) because the risks of the treatment in that person are greater than the chance of benefit. Other people may still be well enough to have treatment, but have already had all the treatment options which might realistically help them.
It is important not to push on with ‘treatment for treatment’s sake’, unless that treatment has a real chance of doing some good without the burden of side effects.
The end of active cancer treatment may be a welcome relief for some people, and marks a change of focus from treatment of the tumour to treatment of the symptoms. This could include moving away from spending time at the cancer centre to spending time with friends and family as well as a change from hoping for improvement in the cancer, to hoping for quality, symptom control, and special times with friends and family.
This is often the point where palliative care is introduced, if your friend or relative is not already under their care. Sometimes future appointments will be arranged with hospital specialists, but at other times it may be clear that it is better to focus care around the home or a hospice. This doesn’t mean that the hospital specialists are no longer involved – they are still available for advice and discussion.
Discussing the person’s wishes
A person with advanced cancer may wish to discuss their thoughts about dying with you. This may be more common if you are their partner or family member. Although it can be difficult to discuss, death is an important issue. Getting advice from a psychologist, social worker or pastoral care worker may help you with the discussion. You may find that many small conversations will allow you to cover the important things you both need to talk about, and that each conversation will become easier.
Choose a time when you are both rested, and a place where you will be comfortable and have enough privacy. Some phrases that might help open the conversation include:
“I know we’re having trouble talking about what is happening to you, but I’d really appreciate a chance to talk about it. It would help me.”
“It feels difficult to bring this up, but we need to start talking about what is going to happen and making some plans together”
Legacy making
You and the person you are caring for may wishing to celebrate life and their legacy. Below are some ideas on creating legacy projects that provide shared, beautiful moments even at times when joyful moments may seem scarce:
- Scrapbook or Life Calendar
- Letters and poetry
- Cookbook
- Portrait
- Memory pillows or plush toys
- Bucket list