Community Member Resources
What is Palliative Care?
Palliative Care is active care that aims to promote comfort when cure is no longer possible.
Palliative care offers a positive approach to caring and encourages people to live as full a life as they can when faced with a life limiting illness. This care provides physical, psychological, social, emotional and spiritual support for patients, families and their friends.
Find out more:
- Palliative Care Australia – What is Palliative Care?
- CARESEARCH – What is Palliative Care?
- Palliative Care Victoria – Multilingual brochures
Advance Care Planning
An Advance Care Plan (ACP) is called an Advance Personal Plan (APP) in the Northern Territory – they are the same thing.
Advance care planning is a process through which you can, in consultation with your family, friends and health professionals, make decisions about your future care in the event of losing your decision making capacity. By promoting your own input into your care, APPs promote care that is consistent with your goals, values, beliefs and preferences.
The process of completing an APP can also prepare you and your family to have discussions about the future and what you would want/would not want when you are very unwell and unable to communicate those decisions yourself.
An APP, also known as a “living will”, is a document that allows you to make decisions about your future. Information on APPs in the Northern Territory is available here. Forms can be downloaded from this site or directly from here.
Additional information about APP:
- Watch this short film about the importance and success of APP on Groote Eylandt
- Advance Care yarning for Aboriginal and Torres Strait Islander people
- Dying to Talk Discussion Starter
- Aboriginal and Torres Strait Islander Discussion Starter
- Discussion Starter Card Game
Planning for the future
There may be some things that you want to think about to plan for the future. It can sometimes make it easier for you and your family/carer if some of these issues have been discussed.
|Advance Personal Plan||Have you completed an Advance Personal Plan to inform others about your choices?|
Operations of account (joint) – Separation of Finances
Have you thought about direct debits or automatic payments for regular bills?
|Carer||Do you know about the carer payments and allowances?|
|Centrelink Veterans Affairs||Are you on the correct payment?|
|Clubs/Organisations||May be able to help out if needed|
|Employer||Is there holiday and Long Service pay that you may be able to access?|
Have you appointed anyone as your financial power of attorney?
|Health Funds||If you have private insurance you may want to find out what may be available for you and your carer now.|
|Live Alone||Who has a key – do you need to give someone a key to your place?|
|Pets||If you have to go away or to hospital, who will look after them?|
|Superannuation||Documentation from your doctor may be given to access your Superannuation.|
School age children
Advise school of the family circumstances
|Will||Have you made a will and is it up to date?|
Care at the end of life
- What happens? The dying process
- Palliative Care Australia – How can I support my friend or family member?
- CARESEARCH – Caring for Someone with Life-limiting Illness
- Cancer Council – Caring for Someone with Cancer
- Carer support – CarersNT
- Companion Guide: For Implementing best practice palliative care for Aboriginal and Torres Strait Islander people in the Northern Territory
- Lung Cancer in our mob
- Renal document
- Cultural considerations: Providing End of Life Care for Aboriginal peoples and Torres Strait Islander peoples
- Sad news and sorry business – Guidelines for caring for Aboriginal and Torres Strait Islanders peoples through death and dying
- Advance care yarning
- CARESEARCH – Aboriginal and Torres Strait Islander Care
Grief, loss and counselling
Bereaved Parents Support Group
Counselling for survivors of torture and trauma
Dept. of Human Services
Emotional and Social Wellbeing Centre
Phone: 1800 551 800
Sids and Kids
Phone: 0448 849 234
Somerville Family Services
Territory Palliative Care
Phone: 1800 011 046
Cancer council of the NT Inc.
Phone: 1300 694 357
Phone: 1800 100 500
Loss and Grief in Palliative Care
The Palliative Care staff are aware of how the death of the client will have a major effect upon the family and people left behind.
The Palliative Care staff will be able to offer:
- Counselling and information in terms of other help that is available.
- In particular the Social Workers and Pastoral Care Coordinator will be able to assist the family and carers.
- A Bereavement Risk Assessment will be carried out by the Palliative Care team in order to assist with identifying any bereavement risks for family and carers.
- The bereavement support offered by Territory Palliative Care will cover 12 months post death and includes: face to face; mail; phone calls; afternoon teas and an annual memorial service.
For information in the Top End please contact: Territory Palliative Care TE: 08 89226761, In Central Australia contact: 08 89517013
The Youth Cancer Services which receives federal funding through CanTeen as well as state and territory govt. Funding provide specialist, age-appropriate treatment and support for young cancer patients aged 15 – 25.
They also have many resources including:
- On-line support services
- Your guide to dealing with cancer
- Dealing with your parents’ cancer
- Guide to CanTeen for parents and carers
- Dealing with your brother, sisters or parents’ cancer
- Living with the death of your parent or sibling
Counselling; educational; legal; financial; wigs and scarves
Phone: 1300 662 267
Run camps and activities for children with cancer and children who’s loved ones have cancer
Provides equipment to assist children who have cancer and other illnesses
Phone: 1800 242 636
Provides support to registered carers
Volunteers play an important and specific role in Territory Palliative Care Services. They make themselves available to support patients, families and staff in the community (when terminally ill people are cared for at home), and the Hospice.
Volunteers are considered to be members of the palliative care team. They are accountable for their work and are expected to attend regular volunteer meetings. Volunteers undertake to observe strict rules of confidentiality.
Volunteers say that working with people who are close to dying is very rewarding and not at all depressing. People are often very “honest and real” at this time and are keen to make their remaining life as meaningful as possible. Humour is an important part of the work and sometimes helps to put it all in perspective. The Territory Palliative Care Hospice is a place where laughter is often heard along with tears and a lot of talking and reminiscing as people use this valuable time to make sure things are not left unsaid.
The role of the volunteer in palliative care is to help people ‘live’ until they die. Many people prefer to be at home in familiar surroundings. Some volunteers go into the home on a regular basis to offer support – this may mean providing a listening ear, help with shopping, going on outings, simple massage or giving the carer some time out. Other volunteers choose to work in the hospice where they play an important role in keeping the environment as homely as possible whilst supporting patients and visitors.
Volunteers give the gift of time, which busy nursing staff and doctors are often unable to do. Sometimes just sitting with someone is of great comfort. Being available to make a special drink, help write some overdue letters, listen, and provide caring touch in the form of simple massage are all within the realm of volunteering in Palliative Care.
Volunteers, unlike family members, do not have a history of relationship with the client. This frees both the client and the volunteer from the need or the desire to interpret and judge what is happening right now. This freedom fosters empathy, which in turn helps patients and their families cope with the day-to-day tasks of coping with a terminal illness. Secondly, because volunteers are unpaid, their compassion may be seen as the community caring for the community. This is particularly important for those experiencing the isolation of progressive disease. Thirdly, volunteers have a unique opportunity to raise the awareness of the community to the issues of palliative care.
Who Volunteers and Why?
Volunteering in Palliative Care is not for everyone but those who do it genuinely enjoy their work. People often become aware of palliative care through a close encounter with death; they may have had a friend, a partner, or a child die. Perhaps they cared for a loved one at home, or have been employed in the area. Some volunteers simply have a genuine interest in this area and seek voluntary work as a way to develop their skills and knowledge. Unfortunately the subject of death and dying is avoided by much of the population and many people realise its importance through personal experience.
Despite the risk of emotional vulnerability, volunteers find that the rewards include the privilege of sharing important moments with patients and their families, the opportunity to re-assess their own lives and the special satisfaction that comes with helping. It is important that volunteers do not share their own opinions and beliefs with clients, unless specifically asked.
Areas of Involvement
Volunteers are matched with a client/family to provide services that ‘fill the gaps’. These may include companionship, respite for carers, outings, assistance with shopping, or practical help at home to maintain quality of life for the patient and family and to help the patient remain at home.
Volunteers help to create the homely environment in the hospice. While an important focus is the time spent with people (listening, chatting, reading, running messages, feeding etc) they also assist by helping with the flowers, administration, morning tea and the Jolly Trolley.
In special circumstances volunteers do provide transport to clients so that they can attend their palliative care appointments. Volunteers are able to be reimbursed for expenses.
Recruitment and Selection
After completing an application form potential volunteers will be invited in for a pre-training interview to assess their suitability for the demands of palliative care volunteering. Successful applicants are chosen for their warmth, open attitudes, self-awareness, emotional resilience, and insight into experiencing the loss, as well as availability and commitment. The selection process is a continuing process and will continue throughout the training period.
Volunteers are not generally accepted into direct client care areas of work until at least 12 months have passed since a significant bereavement.
The recruitment, selection and training process occur usually twice a year. During recruitment time, advertisements may be placed in the local paper. After completing the mandatory training, successful applicants will be notified and asked to attend a post-training interview. Non-successful applicants will also be notified.
All Territory Palliative Care Volunteers undertake the volunteer training course; the training is a competency based program with nine modules to be completed prior to volunteers commencing work.
Some applicants may have completed training and study in various related areas before coming to the Territory Palliative Care Volunteer Service. We do ask however, that everybody undertake our training course to ensure current knowledge, update existing skills and become familiar with the specifics of this organisation. Full participation in the training course helps volunteers to feel part of the team by getting to know others in the process.
Topics included in the training course include; Introduction to Palliative Care, Communication, Diversity, Responding to Loss and Grief, Death and Dying, Spirituality, Illness and their symptoms, the volunteers role, and Self-Care. Additional training sessions are provided.
At the post-training interview with the Volunteer Coordinator each new volunteer will be asked to reflect on the training experience, review their readiness and confirm their chosen area of service. The relevant information package, nametags, and orientation to the hospice will occur. If volunteers request to begin working with an experienced volunteer, this will be organised at this time.
On-going Support and Education
Volunteers are required to attend regular volunteer meetings. These meetings include some administrative business but are largely concerned with issues of concern to volunteers. Volunteers are encouraged to use this time for support, and debrief.
Volunteers are encouraged to attend seminars and conferences throughout the year.
Regular on-going training and education sessions are held for all volunteers to expand their knowledge and skills and to help them stay abreast of developments in the field of palliative care.
Every effort is made to tailor the demands of a particular volunteer role to what an individual is able to offer. Sometimes more than one volunteer is assigned to a family or to a rostered time. This provides some balance in workload and allows for mutual support. Volunteers are encouraged to take leave from the program if personal or family requirements need their full attention.
Volunteers are asked to give an average of 2 hours per week in their chosen area of involvement. Volunteers are also expected to attend regular education and training meetings in addition to their regular volunteer work.
Enquiries regarding volunteering in Darwin Hospice:
Madhu Dasgupta 08 89227962
Useful contacts and links
See here for a list of useful contacts and link for services in the NT.
Frequently asked questions
Why do I need Palliative Care to be involved in my care?
Palliative care can benefit individuals and families living with serious life limiting illnesses. Territory Palliative Care provides expert assistance with regards to physical, psychological, spiritual and social needs.
Why do I need to keep seeing a GP?
Territory Palliative Care work in conjunction with your GP, and are not a replacement for your GP. We will provide a letter to your GP when we see you; therefore, it is important, that you inform us, of your current GP and his/her details.
Where do I get my prescriptions from?
The palliative care team provides a specialist palliative care service. Whilst we may initiate treatment or recommend changes, unfortunately, we are not able to be your principal prescriber. This should remain your GP.
Why do I need an Advance Personal Plan (APP)?
The APP is a useful document where you can record choices and wishes about your future health, finances and lifestyle. If you lose the capacity to make decisions in the future this plan helps your family and treating team know what you want. It allows you to appoint someone you trust to make important decisions on your behalf
Can I still drive?
Driving is a complex task. Please discuss the possible impact of your illness (including the side effects of medications) on your driving, with your GP and palliative care team.
How can I manage and stay safe at home?
The Occupational Therapist can give you advice and recommend suitable equipment (short term loan) to help you manage at home.
How will my family and I cope?
The Palliative Care Team is available to help support you and your family to cope during this difficult time. Service includes: community health nurses, allied health, Aboriginal health worker, pastoral care, after hours phone service and bereavement follow up.
Can Centrelink help me or my family?
It is worth checking your eligibility for Centrelink benefits including Carer’s Payment or Allowance for a family member or person caring for you.
Can I access my superannuation?
Legislation states that if you have a life limiting illness with less than two years to live you are eligible to apply for superannuation.
Is a Will important?
Your Will is a legal record of your wishes. It lets you specify who should benefit from your property, savings and personal belongings.
How do we organise a funeral?
There are 3 funeral services in Darwin who can help you:
Darwin Funeral Services Ph: 8945 2222
Simplicity Funeral Services Ph: 8941 1633
Territory Funerals Ph: 0438 637 258
If you would like to know more about these or other questions please discuss with the Palliative Care Team. Phone: 8922 6761