Palliative care is the provision of caring and dignified support and services for people of all ages facing a life-limiting condition. It is provided wherever the person is, whether that is in the home, hospital, community clinic or hospice.
If you have been diagnosed with a life-limiting condition, palliative care aims to:
allow you to live the way you want during and after treatment and
equip your family and caregivers to support you while taking care of themselves.
When and where is palliative care provided?
The diagnosis and treatment of a life-limiting condition can be mentally, physically and emotionally exhausting. Palliative care is not just helpful at the end of life, but at any stage of the illness.
Palliative care should be provided as soon as the diagnosis of a life-limiting condition is made.
It may be helpful if you suffer from pain, stress or other symptoms that affect your quality of life.
Palliative care aims to help you and your family with your needs, expectations, hopes and fears.
Ensuring that people are living in comfort and without distress is as important as ensuring a good death.
Palliative care is provided wherever the person is, whether that is in the home, hospital, community clinic or hospice.
Who provides palliative care?
Palliative care is generally provided by a team, depending on the setting and the resources available. This team may include family members, community carers, doctors, nurses, psychologists and social workers.
Examples of how team members may provide palliative care include:
Palliative care nurses – provide general care and help you manage pain and other symptoms. They often act as main point of contact between you and the rest of your care team
Social workers – provide support to you and your family and help connect you with the services and resources you require.
Pain specialist – experts at finding the cause of pain and treating it.
Dietitian – help with any dietary challenges, such as nausea or loss of appetite, provide information on specialised eating plans if required.
Physiotherpists – help improve strength and movement.
Occupational therapists – focus on helping you with daily tasks and activities.
Grief and bereavement counsellor – help guide and support families experiencing grief and loss.
What does palliative care involve?
The palliative care approach focusses on meeting the needs of the whole person not just treating their condition.
Palliative care should involve:
An explanation of your illness, treatments, and medications to you and your caregiver.
Pain treatment to help improve your quality of life and relieving any suffering.
Support with managing personal care (showering, eating, etc).
Advice on self-care, such as healthy eating, exercise, and relaxation.
Guidance on ways in which you can receive support and ways you can network with others.
Help with decision-making.
Assistance with advanced care planning, so you can make informed and active decisions about how you want to live and die.
Support for those caring for someone who is dying
There are many people who are caring for someone who is dying throughout New Zealand. Sometimes it can be difficult to know what to do or what help and support is available.
Hospice New Zealand has designed a booklet to provide a clearer picture of the situation and to answer some of the questions or issues that might come up as part of this journey. A guide for carers (pdf) Hospice NZ
Myth:People in palliative care who stop eating die of starvation
Fact:As people deteriorate from advanced illnesses, it is common for hunger and thirst to decline as the body recognises itself that it is coming to end of its’ life. People who stop eating die of their illness not starvation. Hunger is usually absent as death nears, so feeding to prevent hunger is not usually indicated unless the patient desires food. Keeping the mouth moist and comfortable is very important.
Myth:Pain is an inevitable part of dying
Fact: Pain can be managed through a number of ways. Pain management is a vital part of palliative care to make sure the patient is not suffering from their condition or symptoms. Pain is mainly managed by medicines including morphine. Pain is also managed by helping patients live with their pain.
Myth: Palliative care hastens death, it is the beginning of the end
Fact: Palliative care ensures you have the best quality of life until your death. Palliative care provides physical, emotional, social and spiritual support for you and your family. Studies have shown that people with advanced illness who receive palliative care have improved quality of life and have in fact been shown to live longer than people with the same advanced illness who do not receive palliative care.
Myth: You can only receive palliative care in a hospital
Fact: Palliative care is provided in many places including hospital, hospice, aged care facilities and in the home.
Myth: Palliative care is just for people with cancer
Fact: Palliative care can be accessed by anyone suffering from a life-limiting illness, including chronic diseases such as kidney, liver, lung and heart failure, dementia and other neurological illnesses as well as certain conditions among children.
Palliative care is an approach that aims to improve the quality of life of patients and their families facing a life-threatening illness. Prevention and relief of suffering is achieved by means of early identification, thorough assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Components of palliative care
End-of-life care can be divided into three key components:
A comprehensive baseline assessment – involves identification of the lead practitioner, assessment of clinical needs, sensitive and open communication and clear documentation.
Ongoing assessment – with emphasis on the importance of developing individualised care plans.
After death care – includes verification of death and the need of the family/whānau for information and privacy.
Each of these stages of care needs to be addressed in a way that respects the cultural, spiritual, religious and family issues that are unique to the dying person.
Pathways & tools
The development of a model of palliative care for New Zealand
In November 2013,the Ministry of Health commissioned the Palliative Care Council to investigate developing an appropriate palliative care model for NZ. This led to development of a NZ focused model, Te Ara Whakapiri, which was released in December 2015.
Te Ara Whakapiri outlines the essential components and considerations required to promote quality care at the end of life for all adults in New Zealand.
It also provides examples of useful approaches and tools that will serve as aids for the development of national and/or local resources as part of implementation.
The following 7 principles were used to help define Te Ara Whakapiri:
Care is patient-centred and holistic.
The health care workforce is appropriately educated and is supported by clinical champions.
Communication is clear and respectful.
Services are integrated.
Services are sustainable.
Services are nationally driven and supported to reduce variation and enhance flexibility.
Resources and equipment are consistently accessible.
These 7 principles are underpinned by Te Whare Tapa Whā, a model of care that is concerned with the total wellbeing of the person and their family/whānau.
Underpinning this model of care is the recognition that if a person in the last days of life has a level of need that exceeds the resources of the primary palliative care provider, that provider should refer them to specialist palliative care.
Supportive & palliative care indicators tool (SPICT™)
The SPICT™ is a guide to identifying people with one or more advanced conditions, deteriorating health and a risk of dying for assessment and care planning.
It is used around the world and was first developed as a collaborative project between NHS Lothian and The University of Edinburgh Primary Palliative Care Research Group.
Starting conversations with people whose health is deteriorating can be difficult and needs to be done sensitively, but it is very important.
Here are some tips on ways of getting started:
What do you know about your health problems and what might happen in future?
Some people worry about what will happen if they are less well – how do you feel about that?
We would like to hear about anything that is particularly important to you or your family….
Sometimes people want a family member or a close friend to make decisions for them if they get less well…Is that something you’d like to talk about?
We hope you will stay well for a long time, but we are worried about what might happen if …
It is hard to talk about getting less well, but I worry that if we don’t do that we will not be able to make good decisions about your care. What would be the best way for us to talk about this?
