Palliative care overview

Palliative care is widely misunderstood by many New Zealanders. The following are examples of common myths about palliative care.

Read more: 10 myths about palliative care(external link)

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. 

• 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.

It’s not just specialist palliative care services that provide palliative care. Palliative care can be provided by a variety of different healthcare providers.

Palliative care is generally provided by a team, depending on the setting and the resources available. This team may include members of your whānau, 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.
• Palliative care doctors – experts in symptom management.
• Dietitian – help with any dietary challenges, such as nausea or loss of appetite, provide information on specialised eating plans if required.
• Physiotherapists – 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.

Primary versus secondary palliative care

Primary palliative care is what’s provided by your usual healthcare team – which may include your healthcare provider and/or specialists such as your cardiologist or oncologist. These people can continue to support you and your whānau, treat you and manage your symptoms in a way that meets your goals and helps you make decisions about your future.

A specialist palliative care team includes people who are specifically trained to manage more complex palliative care needs. This might be managing severe pain or other physical symptoms, complex emotional or social circumstances or supporting future planning and goals.

You may not need to have a specialist palliative care team involved in your care, but they are there to support you and your primary healthcare team if needed. A referral to a specialist palliative care service is usually made by another healthcare provider.

The palliative care approach focusses on meeting the needs of you as a whole person not just treating your 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.
  
  

Image credit: Canva

You can receive palliative care wherever you choose to be – at home, in hospital or in residential care. Hospice care is available where this support is seen as needed by you and your healthcare team.

Many health professionals and support agencies may be involved in your care including your healthcare provider, district nurses and any other medical specialists who are part of your regular care such as an oncologist or kidney specialist. If you’ve been referred to a specialist palliative care team in the hospital or by referral to a hospice, your usual healthcare provider (eg, GP, nurse practitioner) will continue to be involved in your care. The palliative care team will help co-ordinate your care in partnership with your wider healthcare team, family, hospital and community organisations.

Hospices around Aotearoa New Zealand provide support to people and their families who are living with a terminal illness. Most people are referred to their local hospice by their GP or main healthcare provider. Anyone is welcome to contact their local hospice to find out more about their services. Hospice care is free for anyone in Aotearoa New Zealand who’s eligible for free healthcare.

Hospice NZ has published a booklet called A Hospice Guide for Carers(external link). This is an excellent resource for friends and family. It covers practical and emotional issues around caring for someone with a terminal illness.

Skylight(external link) is a not-for-profit NZ organisation who specifically support children and young people affected by loss and grief.

The Cancer Society(external link) provides services and support for terminally ill patients and families.

Video: We all thought hospice wasn't for us

Catherine explains how her mother, who was reluctant to access hospice support, has embraced all that has been offered. She describes how she has been involved in the decision-making process and how and when hospice gets involved. 

(Hospice NZ, 2015)

Video: Caring for me and my family

Anna shares the experience of her husband's death and the impact hospice counselling services had on their family and for her personally. She shares her experiences of grief and how she has embraced the concept of living every moment. This video may take a few moments to load.

(Hospice NZ, 2015)

Video: The importance of listening

This video may take a few moments to load.

(Hospice NZ, 2015)

Video: Getting the most out of palliative care

Lucy, who has a life-limiting condition, shares what she’s learned about palliative care and how to get the most from medical consultations. Click the image and scroll to the bottom of the page to view video.

(external link)
(NHS, UK, 2016)

Video: Getting the best out of palliative care – Joe and Melita's story

Melita has terminal cancer. She and her husband Joe describe how palliative care has helped to make her more comfortable. This video may take a few moments to load.

(external link) 
(NHS, UK, 2016)

Video: You only die once – Kate Granger’s story

Kate, a specialist registrar in geriatric medicine, has a terminal cancer diagnosis. In this video, Kate and her husband Chris share their journey and talk about dying, death and making plans for the end of life. 

(Hospice UK, 2014)