End of life care is an important service in New Zealand. Reaching out early on for help allows care specialists to better understand your needs and respond suitably.
When we or someone close to us is dying, we want to know this can be done peacefully, comfortably and with dignity. Knowing your options, and where to go for help, can be the key to managing this in a way that fits well with you and those closest to you.
Your own support systems
Gathering a range of support around you can be helpful. This may include those you feel most supported by, those who know you most intimately, and those who can offer expertise and/or support in other ways, like meals, transport or friendship. As time progresses family members and/or those close to you often become skilled at understanding your unique needs. They may therefore become your best advocates if the need arises. Remember, they need support and time out too, to recharge their own batteries.
While having your own support crew is great, most people need more specialised support at various times. This is commonly provided by members of a palliative care team. Ask your GP to refer you if this has not been done. An interRAI Palliative Care assessment may be advised.
Palliative care
This specialist type of care focuses on you and your support networks. It takes a holistic approach, incorporating medical and nursing care with psychological, social and spiritual components. It aims to provide comfort and dignity by maximising quality of life, managing symptoms, and offering individual care and support to you and your family/whānau.
Palliative care is commonly associated with hospice, although it can also be provided by trained hospital teams, some GPs, home-based support services, district nurses, staff at a residential care home, specialist nurses, or hospice staff working in the community. They will help you understand treatments such as chemotherapy and radiotherapy, assist with managing any distressing complications, and provide education for you and your supporters.
Palliative care specialists understand the emotional rollercoaster you may experience and are trained to respond sensitively and appropriately. They can provide practical support, like ensuring you have the equipment you need, be a listening ear, assist you to achieve goals (such as catching up with a special friend or writing a book of memories) and offer support to help families cope during your illness and, later, in their own bereavement.
End of Life Doulas
End of Life Doulas provide compassionate, non-medical support to people living with serious illness, those who are dying, and their whānau. The End of Life Doula Alliance Aotearoa maintains a directory of practising doulas: www.eldaa.org.nz.
Residential care
If remaining at home ceases to be an option, you may need to move to a care home. Payment and funding rules vary - ask your local provider about how this is funded in your region. Funding may also depend on any pre-existing conditions. This means that depending on the circumstances, some people may have to pay for part or all of their care. Ask your service coordinator about what applies in your situation. Work and Income can clarify queries on residential care payments.
Hospice
Hospice staff and their associated palliative care and volunteer teams are skilled at delivering end of life care. Hospices often provide inpatient services for respite, symptom and pain management, or support if their care cannot be provided elsewhere. At the end of life, some people may have the option to spend time in a hospice. While Hospice NZ does not agree with assisted dying, they will continue to support people regardless of their beliefs. Find practical resources ‘A Hospice Guide for Carers’ and ‘The Palliative Care Handbook’ at
www.hospice.org.nz.
Assisted dying
The End of Life Choice Act 2019 allows those 18 or over who experience unbearable suffering from a terminal illness to legally ask for medical assistance to end their lives.
The decision to receive assisted dying is entirely yours: never feel pressured by anyone, including friends or family. You can change your mind at any time.
You must first raise the subject with your doctor as they are not permitted to raise it with you. If your doctor is unwilling to assist you, you have the right to choose another. The SCENZ Group maintains contact details of medical practitioners and psychiatrists willing to provide parts of the assisted dying services (freephone 0800 223 852). The legislation sets tight controls on who can avail themselves of the option. If you are in a care home and you intend to exercise your right to assisted dying, check whether your care home will support you.
Speaking frankly
A common concern people have is that end of life care will not adequately manage their symptoms. Research and ask questions to satisfy yourself about this (or have someone else do this and explain it to you in a way you feel comfortable with). Choose your advisors and advocates carefully, ensuring they respect your values and wishes.
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