Planning ahead

People with MND are encouraged to talk through options for their care and preferences for end of life, before the need is urgent or before you find it too difficult or tiring to communicate. Having time to think things through and knowing that your wishes and decisions have been recorded gives many people peace of mind.

The aim of hospice is to help people make the most of their lives, in whatever way is important to them. Anyone living with a life-limiting condition can access and benefit from hospice services.

Hospice NZ care has a unique 'whole person' approach, which means physical, spiritual, emotional and social needs are equally important. A multidisciplinary team provides care for the person who is dying and their families and friends, both before and after a death. While most hospice services in New Zealand do have inpatient facilities, the majority of people are cared for in their homes.

Find your local hospice service here.

An advance directive is a way to choose specific treatments you would or wouldn't want if you can't speak for yourself. If you're unable to communicate, your healthcare team will use your advance care plan and directive. They'll need to be sure that:

• You fully understood what you were asking for
• You weren't pressured by someone else
• You intended it to apply to your current situation

For more information, visit the New Zealand Medical Association website.

Writing an Advance Directive:

As part of advance care planning, you may decide to create an advance directive. This records your choices about treatments you want or don't want in case of a medical emergency, serious illness, or injury. While it can be spoken, it’s best to put it in writing. It’s also a good idea to discuss your preferences with your doctor. You can request that your Attorney for personal care and welfare refers to your directive when making decisions.

Your Advance Directive is more likely to be followed if:

• You were competent when making it
• You intended it for the current situation
• You were well-informed
• It was made freely, without pressure
• It is up to date

Your directive will only be used if you've lost mental capacity, are unconscious, or can't communicate. Doctors will consider your directive in deciding what’s in your best interest, but they aren’t legally required to follow it if it doesn’t align with good medical practice. For example, they wouldn't be obligated to follow requests for assisted dying or treatments outside of medical guidelines.

Storing Your Advance Directive:

Keep your advance directive somewhere accessible, like in your wallet, and give copies to your Attorney for care and welfare, your doctor, healthcare facility, and close family or friends. Update them with new copies if you change your directive.

Changing Your Advance Directive:

You can update or rewrite your directive anytime, as long as you're able. Review it yearly to ensure it's still relevant, especially if your health or circumstances change. Sign and date the updated version, and share new copies with your Attorney, doctor, healthcare facility, and others.