Ask the Nurse: Planning ahead – your wishes for your care

Everyone responds in their own way when they are diagnosed with an incurable cancer such as myeloma. You may have questions that have no definite answers.

You might have questions around how your health will change, the effect having myeloma will have on your independence, relationships, and work, and how much time you may have left.

It can be helpful to start planning, thinking, and having conversations about your preferences and treatment options, including what you would like to happen if you became seriously unwell.

Making plans for the end of life can actually help you get on with living now. Thinking about the end of life does not bring it closer and may bring peace of mind. Making plans can be reassuring, allowing choice and control over what happens in the future, as far as is possible.

This month’s blog covers some key questions that myeloma patients have told us they want to know more about when considering end-of-life planning.

Why should I plan for my end-of-life care?

Many people think they do not need to make decisions about their future care unless they are very unwell.

However, things get more stressful and more urgent when someone becomes seriously ill; therefore, there is less time to discuss and review treatment options. Having a plan that outlines your preferences can make decisions about end-of-life care less stressful for you and your family.

Planning ahead can also help you take control. You may find any fears or concerns easier to cope with as you discover the care and support options available.

Everyone has different reasons for planning ahead. These could include:

• Avoiding your family having to make difficult decisions for you or disputing decisions
• Preserving your dignity
• Preventing pain, managing symptoms, and improving quality of life
• Ensuring you have a say in how you are cared for

It can also be a good way to start conversations with your friends and family about what you want in the future.

What should I include in my plan?

Your plan can include any decisions and preferences about how you want to be treated and cared for towards the end of life. This might be:

• Where you want to be cared for at the end of life, e.g., at home, in a hospital, in a nursing home or a hospice
• How your religious and/or spiritual beliefs should be respected
• Who you want to see and when you want to see them
• The things you need to maintain your identity, independence, privacy, and dignity
• Who your doctors or nurses should talk to if you are unable to make decisions
• How you would like practical matters dealt with, such as caring for a pet
• Decisions about the type of treatment you do or do not want

When making your plan ask yourself, ‘what matters to me?’, ‘what do I want?’ and ‘what don’t I want?’. Thinking about what matters most and sharing your wishes can help you feel confident in your decisions.

Conversations with your healthcare team and those closest to you will help them understand what’s best for to you.

How do I formalise my plan?

Speak to your doctor or nurse. They might have already started suggesting a conversation about your future care. If they haven’t, you can begin the discussion with them anytime.

Ask them for an advance care planning form. Some NHS Trusts or GP surgeries will have these available on their websites. You could also try:

• Advance Care Plan in England and Wales
• The anticipatory care planning toolkit in Scotland
• Record of my wishes in Northern Ireland
• My Living Will  

Our Advanced Care Planning blog has detailed information on how to record your decisions.

How do I make sure people know my wishes?

Once you have written your plan, share it with people involved in your care, your friends, and your family.

You can give copies to anyone involved in your care. This can include your consultant, social worker, your local hospital, and local ambulance service. You can also ask your GP to keep photocopies with your medical records.

Can I change my plan if my preferences change?

You can change your plan at any time. It’s a good idea to review your plan regularly to make sure it still reflects your needs and wishes.

But remember, you need to make sure you record your changes. You also need to tell certain people and give them an updated copy of the document.

If you would like to find out more about advanced care planning, see Planning ahead: an Infopack for myeloma patients from Myeloma UK. You can also watch our recorded Digital Infoday Session which features experts speaking on this topic.

If you’re looking for support or information on myeloma or planning ahead, you can speak to one of our friendly Myeloma Information Specialists. Call them on 0800 980 3332 or drop us an email.