Support & Information
Health and social care

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.

Basic Facts

Hospice

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.

Skylight grief support

Skylight is a national not-for-profit trust that helps children and young people through times of trauma, loss and grief. Skylight can send support information tailored to specific situations, posted out to anyone, anywhere in New Zealand. (A donation is requested to help cover the cost of this service.) Support resources and publications are also available for loan including books, DVDs and games.

Phone: 0800 299 100 or +64 4 939 6767

Email: r

Advance care planning

© This information has been adapted and reproduced for New Zealand law with permission from NSW Trustee & Guardian (www.planningaheadtools.com)

Advance care planning is the process of thinking about, talking about and planning for future health care and end-of-life care. It is about identifying what matters to you. Advance care planning helps people understand what the future might hold and to say what treatment they would and would not want. It helps people, their families and their healthcare teams plan for end-of-life care. This makes it much easier for families and healthcare providers to know what the person would want, particularly if they can no longer speak for themselves.

Importance of Advance Care Planning:

  • Advance Care Planning is a way to make sure that people who are involved in your life understand your wishes about medical treatment and health care. This will help to guide them if you become seriously ill or injured and cannot make your own decisions about health care. Like making a Will or appointing an Enduring Power of Attorney (EPA), Advance Care Planning is an important part of planning ahead.
  • It helps you to understand what the future may hold, and to say what health care you would and would not want. An Advance Care Plan includes what is meaningful to you, like people and pets, your values, and the way you would like those providing care for you to look after your spiritual and emotional needs.
  • You can start to talk about Advance Care Planning any time, as part of general discussions about your health or medical care. Many people start to think about Advance Care Planning because they have health problems or a serious illness that will get worse over time. However, Advance Care Planning can also guide families and health professionals if you have an unexpected accident or illness.
  • Advance Care Planning is a process that occurs over time, and may be reviewed when your situation changes.

The Advance Care Planning Process:

Advance Care Planning is not a single process. Advance Care Planning should include:

  • talking to your family and other people close to you about your wishes, values and beliefs about medical care and treatment towards the end of your life
  • talking to your doctor and other health professionals about any medical or health issues you have, what treatments are available and what choices you would like to make about your medical care
  • thinking about what ‘Living Well’ means to you and what treatments you would want to have that may prolong your life, and what treatments you would refuse
  • appointing an EPA for personal care and welfare (an Attorney) who would make medical decisions for you if you were unable to make your own decisions (See Enduring Power of Attorney, below)
  • writing down your wishes, perhaps as an Advance Directive.

Helpful websites

There are three New Zealand websites that can help people in New Zealand plan for the end of their life:

Writing an advance directive

© This information has been adapted and reproduced for New Zealand law with permission from NSW Trustee & Guardian (www.planningaheadtools.com)

An advance directive is a way of choosing beforehand specific treatments you would or would not want in different circumstances if you were no longer able to speak for yourself. If you can’t speak for yourself, it is the responsibility of your healthcare team to apply your advance care plan and advance care directive. When applying the advance directive, they must be confident that you:

  • Fully understood what you were asking for
  • Were free from influence or duress from someone else, and
  • Meant this to apply to the current situation

More information can be found on the New Zealand Medical Association website.

As part of the Advance Care Planning process, you may decide to write an Advance Directive. An Advance Directive records your choices about possible future health care procedures including specific wishes about treatments that you would like to have in the event of a medical crisis, life-threatening illness or injury, and any treatments you would refuse.

It can be written or oral but it is wise to put it in writing. It is a good idea to discuss your wishes and treatment options with your treating doctor. You can request that your Attorney for personal care and welfare refers to your Advance Care Plan or Directive before making any medical or health decisions.

Your treating doctor is more likely to consider your Advance Directive to be valid if:

  • You were competent to make it
  • You intended your directive to apply to the present circumstances, which may be different from those anticipated
  • You were sufficiently informed to make the decision
  • You made the decision of your own free will
  • It is current (it wasn't written a long time ago and you have not changed your mind since writing it)

Doctors and health care professionals will only consider your Advance Directive if you have lost mental capacity, are unconscious or otherwise unable to communicate.

Your Advance Directive should be taken into account in deciding what is in your best interests. Be aware that your doctors and health care professionals are under no absolute legal obligation to follow an Advanced Directive that is not consistent with good medical practice.  Your doctor, for example, would be under no legal obligation to follow your request in your Advanced Directive for a particular course of palliative care or for assisted dying.

You should keep your Advance Directive in a place that is easily accessible for you or for others to obtain if needed. Keeping a copy close to you (such as in your wallet) is sometimes suggested. You should also give a copy of your Advance Directive to your Attorney for care and welfare, doctor, health care facility, family members or other important people in your life. Remember to give updated copies to these people whenever you change your Advance Directive.

Changing your Advance Directive

You can update or re-write your Advance Directive whenever you like as long as you have capacity. It is a good idea to read over anything you have written once a year to make sure it is still current. You may also change your Advance Directive if your health needs or life circumstances change. Make sure you sign and date your Advanced Directive when you have reviewed it so health professionals know that it is current.

Remember to give updated copies to your Attorney for care and welfare, doctor, health care facility, family members or other important people in your life whenever you review your Advance Directive.

For more information

Speak with your solicitor or general practitioner for more advice. Templates for Advance Directives are available on the New Zealand Medical Association and Health and Disability Commissioner websites.

More information is also available on the Health Navigator website.

Preparing a will

© This information has been adapted and reproduced for New Zealand law with permission from NSW Trustee & Guardian (www.planningaheadtools.com)

What is a Will and who should have one?

A Will is a legal document that clearly sets out how you want your estate (property, finances and belongings) to be distributed when you die. It is recommended that everyone 18 years and over should make a Will.

Can I change my Will?

You should review and update your Will when there are major changes in your life – such as getting married or divorced, having children, buying a house or business.

What is an executor?

An executor is the person who administers your estate after you die. They carry out your wishes outlined in your Will. They should be someone you consider as capable, trustworthy and reliable, as well having the ability to remain independent in the event of a dispute.

Can I write my own Will?

Yes, but there are certain legal requirements to make it valid. You should seek the assistance of a professional such as your local solicitor or a trustee company to help prepare your Will and make sure your intentions are clearly documented.

What happens to my estate if I die without a Will?

If you die without a Will (called intestate), your assets will be divided up by a pre-determined legislated formula, with certain family members receiving a defined percentage of your assets. If you die intestate and have no surviving relatives, as defined by the legislated formula, the government will receive your estate.

What happens if I don’t clearly outline in my Will what my wishes are for my children?

Not providing adequately for children could result in your Will being contested. Not nominating guardian/s for any children aged under 18 could also mean that it becomes more difficult for the Court to decide who should have day-to-day care of the children.

If I have moved from overseas and made a Will where I previously lived, should I make a new Will?

Due to differences in laws overseas, you should have a Will made in your country of permanent residence to include all your assets.

Appointing an enduring power of attorney (property)

© This information has been adapted and reproduced for New Zealand law with permission from NSW Trustee & Guardian (www.planningaheadtools.com)

What is an Enduring Power of Attorney (EPA) in relation to property?

An EPA in relation to property is a legal document where you appoint an Attorney to manage your finances and property on your behalf. An Attorney cannot make decisions about your lifestyle, medical treatment or welfare. An EPA in relation to property ceases when you die.

What is the difference between an ordinary Power of Attorney and EPA in relation to property?

An ordinary Power of Attorney ceases to have effect if a person loses mental capacity.

An EPA in relation to property continues to be in force after you lose the capacity to manage your own affairs.

You can make either, but you should consider an EPA in case of future incapacity or as you age. It is too late to appoint someone you choose once you lose mental capacity.

If you’re no longer able to manage your financial affairs and you don’t have an EPA in relation to property then an application to the Family Court may be required to appoint a Property Manager to deal with your affairs.

When can an Attorney manage my financial affairs?

Your Attorney for property can be activated either while you still retain mental capacity,  or when you lose mental capacity to the extent that you are no longer able to make decisions.

Who can I appoint as my Attorney?

It is important to choose someone you trust and who understands your wishes. An attorney should have the skills and ability to manage your finances and act in your best interests. You can appoint your solicitor, a trustee organisation or someone in your life you trust.

How can I appoint an Attorney in relation to property?

To appoint an Attorney for property you need to complete an Enduring Power of Attorney for property which is available on the Ministry of Social Development’s ‘Super Seniors’ website.   Alternatively, a lawyer or trustee company can help you prepare the documents.

You and your Attorney/s have to sign the form. You also need to have your signature witnessed and certified by a legal person. This will be either a lawyer, a qualified legal executive or a representative of a trustee company. You can appoint more than one person to be your Attorney for property.

Once I have an EPA in relation to property, will I lose control of my finances?

No. The appointment of an Attorney gives formal authority for the chosen individual to manage your financial affairs, according to your instructions. You can define these powers to be very broad, or confine them only to specific property. You can also appoint someone to monitor how the Attorney is carrying out their role.

How and when can I cancel an EPA in relation to property?

You can cancel (revoke) it at any time if you have the capacity to do so.  To revoke an Attorney’s power to act you must write a letter to your Attorney to inform them that their appointment is revoked. Keep a copy of the letter yourself and notify your bank or other financial institutions of any changes.

Appointing an enduring power of attorney (care and welfare)

© This information has been adapted and reproduced for New Zealand law with permission from NSW Trustee & Guardian (www.planningaheadtools.com)

What is an Enduring Power of Attorney (EPA) for personal care and welfare and why should I use one to appoint an Attorney?

An Attorney appointed under an EPA for personal care and welfare is a person you choose to make decisions on your behalf in areas of lifestyle and health such as medical decisions, accommodation and services. An EPA for personal care and welfare only comes into effect if you can no longer make decisions for yourself due to incapacity. Appointing an Attorney for personal care and welfare can avoid conflict and distress for you and your family and ensures you are in control of who makes decisions on your behalf. An Attorney cannot make or alter a Will for you unless directed by the Family Court, and they cannot make decisions about your money or assets. They cannot consent to a range of significant medical procedures, or deny lifesaving treatment.

How can I appoint an Attorney for personal care and welfare?

To appoint an Attorney for personal care and welfare, you need to complete an Enduring Power of Attorney for personal care and welfare which is available on the Ministry of Social Development’s ‘Super Seniors’ website. You and your Attorney have to sign the form. You also need to have your signature witnessed and certified by a legal person. This will be either a lawyer, a qualified legal executive or a representative of a trustee company. You can only appoint one person to be your Attorney for personal care and welfare.

Who can be an Attorney for personal care and welfare?

Given the important nature of this decision-making role, the person you appoint should understand their responsibilities and should support you to make your own decisions where possible. Your Attorney should be someone you trust to be able to take into account your views and previous lifestyle choices and to make decisions in your best interests. Also, they must be over 20, not bankrupt, and have mental capacity.

Can my nominated Attorney be changed or cancelled?

You can cancel (revoke) your EPA while you still have capacity by giving your proposed Attorney notice in writing. If you don’t have capacity, only the Family Court can revoke the EPA.

What is legal capacity?

© This information has been adapted and reproduced for New Zealand law with permission from NSW Trustee & Guardian (www.planningaheadtools.com)

The law around capacity and decision making for adults is the Protection of Personal and Property Rights Act 1988. This law assumes that every adult has the mental capacity to make decisions: they can make and understand the consequences of their decisions, and they can then communicate those decisions. Capacity can be affected temporarily because of illness or the effects of medication, or permanently affected due to conditions such as intellectual disability, dementia, mental illness or brain injury. It is important not to assume that just because someone has memory problems or a disability, they can’t make their own decisions.

If you have concerns about a person’s capacity, you should request an assessment by a health professional. You should ask the person’s doctor to undertake the assessment or for an appropriate specialist referral. To plan ahead, you must be deemed to have capacity.

If someone has lost the capacity to make decisions about their welfare or finances an application will need to be made to the Family Court for an Attorney to be appointed.

Fact sheets

MND Scotland has several helpful fact sheets (PDFs) for people considering powers of attorney, advance directives, leaving a legacy or medical bequest as well as those who need to deal with bereavement and other arrangements.

Note: New Zealand law differs to Scotland law, so these documents are for reference purposes only. Please seek the advice of a lawyer for all legal matters (eg wills, powers of attorney).

Brain and spinal cord donation

Some people with MND wish to donate their brain and spinal cord to the Neurological Foundation Human Brain Bank at the University of Auckland. If this is something of interest to you then please discuss the wish with your family who will carry out your wishes when you die. Also, for more information on the processes and procedures please email or phone 09 923 6072 and the Brain Bank Manager Mrs Marika Eszes will send you the details.

If the situation is urgent then please contact Professor Maurice Curtis who is the Deputy Director of the brain bank. Phone 021 287 8476 or email