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.

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:

• Advance Care Planning: www.advancecareplanning.org.nz (contains resources in Maori and Korean)
• Te Hokinga ā Wairua End of Life Service: www.endoflife.services.govt.nz

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.

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)