End of life care is support for people who are in the last months or years of their life.
End of life care should help you live as well as possible until you die, and to die with dignity. The people providing your care should also support your family/whanau, carers, or other people who are important to you.
You have the right to express your wishes about where you would like to receive care and where you want to die. You can receive end of life care at home, in residential care, hospices, or hospitals depending on your needs and preferences.
People who are approaching the end of life are entitled to high quality care, wherever they’re being cared for.
End of life care is tailored to the person who needs it. You and the people close to you should be at the center of decisions about your care.
It helps if your wishes are written down as a personalised care plan and, if you agree, this can be shared with the people involved in your care now and in the future. It’s important that this care plan is reviewed regularly so that it stays up to date as your situation and wishes change.
The staff caring for you should show respect for you and behave kindly. Your comfort and dignity are important.
Who provides end of life care?
Different health and social care professionals may be involved in your end of life care, depending on your needs. For example, hospital doctors and nurses, your GP, community nurses, hospice staff and counsellors may all be involved, as well as social worker, pastoral care, physiotherapist, occupational therapists, or complementary therapists.
If you are being cared for at home or in residential care, your GP has overall responsibility for your care. Community nurses usually visit you at home, and family and friends may be closely involved in caring for you too.
What is palliative care?
End of life care includes palliative care. If you have an illness that can’t be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family/whanau, or carers. This is called a holistic approach, because it deals with you as a “whole person”.
Palliative care isn’t just for the end of life. You may receive palliative care earlier in your illness while you are still receiving other therapies to treat your condition.
Who provides palliative care?
Many healthcare professionals provide palliative care as part of their jobs. An example is the care you get from your GP or community nurses.
Some people need additional specialist palliative care. This may be provided by consultants trained in palliative medicine and/or specialist palliative care nurses.
Palliative care teams are made up of different healthcare professionals and can co-ordinate the care of people with an incurable illness. As specialists, they also advise other professionals on palliative care.
Specialist palliative care services are provided by Hospice Whanganui.
Overview of the Hospice New Zealand Standards
Paerewa 1: Te arotake hiahia
Standard 1: Assessment of needs
Initial and ongoing assessments are comprehensive and person-centred, and incorporate the person’s physical, psychological, cultural, social and spiritual experiences, needs, preferences and priorities.
Paerewa 2: Te whakarite mahere manaaki tāngata
Standard 2: Developing the care plan
The team works in partnership with the person, their family, whānau and carers, to communicate, plan, set goals and make informed decisions about their care plan.
Paerewa 3: Te manaaki tāngata
Standard 3: Providing the care
Care provided is empathetic, informed by evidence, and aligned with the person’s values, culture, goals and preferences as documented in their care plan.
Paerewa 4: Te tautāwhi whānau me ngā kaitautoko
Standard 4: Supporting and caring for the family, whānau and carers
The person’s family, whānau and carers’ needs and preferences are assessed and they are provided with appropriate support, guidance and resources.
Paerewa 5: Te whakawhitinga o ngā ratonga
Standard 5: Transitions within and between services
Palliative care is accessible to all people who need it and it is integrated and coordinated across the person’s experience to ensure seamless transition within and between services.
Paerewa 6: Te tautoko me te manaaki pāpouri
Standard 6: Grief support and bereavement care
The person at the centre of care, and their family, whānau and carers, have access to grief support and bereavement care services and they are provided with information about loss, grief and bereavement.
Paerewa 7: Te ahurea o te tari
Standard 7: Culture of the organisation
The Hospice service has a philosophy, values, culture, structure and environment that supports the delivery of person-centred palliative and end-of-life care.
Paerewa 8: Te whakapakari kounga me te rangahau
Standard 8: Quality improvement and research
Hospice services are engaged in quality improvement and research to improve service provision and the development of palliative and end-of-life care.
Paerewa 9: Ngā tohu me ngā mahi whakangungu a ngā kaimahi
Standard 9: Staff qualifications and training
Staff and volunteers are skilled, competent, qualified, and engaged in continuing professional development appropriate to their role and the capability of the Hospice service.
When does end of life care begin?
End of life care should begin when you need it and may last a few days, or for months, or years.
People in lots of different situations can benefit from end of life care. Some people may die within the next few hours or days. Others receive end of life care over many months.
People are considered to be approaching the end of life when they are likely to die within the next 12 months, although this isn’t always possible to predict. This includes people whose death is imminent, as well as people who:
- have an advanced incurable illness such as cancer, dementia, or motor neurone disease
- are generally frail and have co-existing conditions that mean they are expected to die within 12 months
- have existing conditions if they are at risk of dying from a sudden crisis in their condition
- have a life-threatening acute condition cause by a sudden catastrophic event, such as an accident or stroke
How do I find out about end of life care services in my area?
If you are approaching the end of life, or caring for someone who is, and you want to find out about the care and support available, your first step is to speak to your GP.
Part of their job is to help you understand which services are available locally to help.