Volunteers in Palliative Care: An Experience in South Australia

During my visit to Australia in May 2017, I had a chance to visit the Palliative Care Department of The Queen Elizabeth Hospital in Adelaide, South Australia. The hospital has a well-equipped dedicated ward for the patients needing palliative care with trained medical staff to look after them.

Each state in Australia has an independent palliative care organization, through which palliative and hospice care is provided. Volunteers are considered an integral part of every palliative care team, and each organization from time to time invites applications from the interested members of the society to join the volunteer movement. Interested persons are then screened, selected, and are given training.

Some of the criteria for selection are:

1. The person chosen as a volunteer should be of caring nature. In other words, a person who cares for others and is friendly, open, compassionate, and flexible

2. They should be willing to share his/her time, skills, and life experiences with others

3. They should be well respected and valued by others in their own community and others. This quality is given special importance as the palliative care service work closely with Aboriginal communities.

Volunteers who work with Aboriginal families are usually from these communities. Aboriginals follow certain customs and rules and role of a community chief is very important. Volunteers working with them are required to be familiar with these customs and need to get permission of the chief before they can act. Aboriginal Australians usually prefer to look after their loved ones and prefer to keep them at home rather than admitting them in a hospital, hospice, or aged care home. Therefore, many noncurative, palliative patients from the Aboriginal families are kept at home, and the volunteers are required to reach out to the place of their residence, which often could be a remote location. Although some members from these communities have assimilated with the mainstream society, most of them still live in the outback, away from the cities.

At these locations, the volunteers need to look for, find, and get help to provide:

1. Resources: Equipment needed to take care of the patient at home. These may include beds and wheelchairs

2. Find a way to bring together caregivers, members of the family and community to talk about sensitive issues, and which include moving the patient to a hospital or hospice

3. Caregiving tips and advice to the family and caregivers, on how to take care of the patient and how to make him/her more comfortable

4. Volunteer needs to act as liaison between the medical team and the patient and sometimes assist in management of symptoms

5. Link the families with the agencies providing financial help

6. Support the family to meet their cultural obligations

7. Support or find support for the family members with emotional and spiritual concerns

8. Counsel and support the patients and families in grief.

Aboriginal centers for medical help and Aboriginal health service, general practitioner doctors or practicing nurse in that area usually works with these volunteers to provide the palliative care to the patients residing in remote area.

Once the volunteers are selected, they are trained by respective palliative care organizations and are covered by policies of these organizations, which include clauses such as safeguarding patient's confidentiality and family matters. Training includes listening skills, communication, basic understanding of life-limiting diseases, dying process (end of life), bereavement loss, coping with loss, and grief. Once they successfully complete the training, all the volunteers are given a ID by the respective organization identifying them as a volunteer in palliative care for that state or an area. These volunteers are then considered as an essential part of the multidisciplinary team of specialist palliative care providers.

Volunteers are expected to give around 3–4 h of their time per week and are expected to offer this time to support the patients in the palliative care ward of the hospitals, hospices, aged care homes, or at patient's homes. Although volunteering service is offered free, some state organizations compensate or reimburse the volunteers for their efforts and expenses. Financial support needed for running a volunteer program usually comes from the donations (from patients and their relatives and friends) and monetary assistance offered by the Commonwealth Department of Health and Aged Care, Federal Government of Australia.

In "The Queen Elizabeth Hospital Palliative Care Ward," the doctors on rounds spend at least 45–50 min with each patient and everything that is communicated between the doctor and the patient is recorded and documented electronically using a bedside computer monitors. This also includes knowing patient's wishes and preferences about involving volunteer service, the type of involvement, and the time commitment of the volunteer required for an individual patient.

Duties of the volunteers can be broadly stated as:

1. Provide companionship to the patient and family

2. Listening to and giving emotional support to the patient and family

3. Giving respite to the caregiver

4. Providing help in shopping and other household chores

5. Provide transportation, including ambulance, to clinics, hospitals

6. Reading books, newspapers, etc., to the patient

7. Giving support to the members of the family to cope with the loss, grief and bereavement.

Besides these, some volunteers also offer services in host of complementary therapies. These volunteers are specially trained for such duties and are certified to offer these therapies. Counseling is usually not done by the volunteers although some volunteers may assist a certified counselor if required. Palliative counselling is done by the palliative doctors, and if patients have complex psychosocial needs, a qualified and experienced counselor does the job.

Apart from these regular Palliative Care Volunteering Services, Government of South Australia runs a service called "Carer Support" designed specially to assist caregivers of patients:

1. With intellectual disability

2. With autism spectrum disorder

3. With physical disability

4. With other mental illness

5. With chronic physical illness

6. Aged, weak, frail, or with dementia.

"Carer Support" is usually free or is provided with a nominal charge. State and federal government provides the funds.

These volunteers are specially trained for specific duties. They provide:

1. Respite: Whenever a caregiver needs a break from his/her caregiving duties or whenever the caregiver needs an emergency relief, the respite team is just a phone call away. Occasionally, respite for more than a day or few hours in case, there is an emergency. Respite could be at patient's home, out of home or it could be just to help the patient to attend medical appointments. The caregiver may need respite for personal reasons, such as family functions, work, medical emergencies, shopping, or even just as a break from routine

2. Information: This could be about various medical and nonmedical services, equipment, and contact details of various organizations offering help

3. Support: Volunteers can introduce these caregivers to various support groups or network of people going through similar situation. Educational and vocational training is also offered

4. Bereavement support: Support is provided to cope with loss and grief. Specially trained volunteers provide practical and emotional support, counseling

5. Remembrance service: A memorial service is held every year for the deceased patients.

Some volunteers who have special skills and knowledge about art, craft sewing, needlework, etc., work with patients in ward or at home to teach them or use their skills in needlework, knitting, quilt work, painting, writing, and such other activities and put their time and efforts to effective use. Some organizations also auction some of these products and raise money.

There is usually a chapel or a prayer cum meditation room in most of the hospitals. Volunteer chaplains conduct prayers, and there are regular meditation sessions conducted by trained volunteers.