Gazebo in the frost on the grounds. (Photo courtesy of Rachel Bilton- Simek 2014)

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1 Gazebo in the frost on the grounds. (Photo courtesy of Rachel Bilton- Simek 2014) Calvary Healthcare ACT is a part of the ACT public healthcare system and includes the provision of specialist palliative care services to ACT and surrounds. Our specialist palliative care service is based at Clare Holland House and aims to improve quality of life in a variety of settings. These consist of the: 1. Palliative Care consultative services to Canberra Hospital and Calvary hospital, including a Palliative care nurse at Calvary hospital. 2. Palliative Care Medical Specialist consultants for the private hospitals, 3. The Calvary Centre for Palliative Care Research aims to develop palliative care practice, improve service delivery and improve patient and carer outcomes. It is co- funded by Australian Catholic University and Calvary Health Care ACT. The Centre has three streams of work: Clinical Care, Care Pathways, and Care Relationships. Current projects include: developing an evidence base around empathy in family meetings, examining preventable ED presentations and integrating specialist palliative care into residential care for older people. 4. Community Specialist Palliative Care Services including: Palliative care liaison for all Residential Aged Care Facilities across Canberra, (90 clients of RACFs receiving support via the liaison team) Outpatient clinics at Clare Holland House (currently 128 patients receiving care via clinics) MND outpatient clinic at a community health centre monthly, o 3-4 clients per clinic Home Based Palliative Care team for patients who need to be seen at home (currently caring for 135 clients in their homes) 5. And a 19 bed inpatient unit. The inpatient unit and outpatient clinics accept referrals from surrounding NSW regions as well as the ACT.

2 The palliative care specialists are available 24 hours a day seven days a week to provide advice and support to medical practitioners within ACT and surrounding region. Atrium garden at Clare Holland House. (Photo courtesy of Rachel Bilton- Simek 2014) Clare Holland House Inpatient Unit (Hospice) The inpatient unit accepts from surrounding NSW as well as the ACT. Medical Care is provided within the unit by a palliative care specialist and medical registrar, on rotation from The Canberra Hospital. Medical staff is rostered between 8.30am and 5.30pm and is on call after hours. Weekend cover is provided by accredited general practitioners with support from the specialist on call. The specialist palliative care nursing team working in the inpatient unit consists of a combination of Registered Nurses, Enrolled nurses, Endorsed Enrolled Nurses and Assistants in Nursing. Our nursing team consists of approximately 25 nurses, with a broad range of skills and experiences. They support and preceptor EEN students from the Canberra Institute of Technology and Registered nursing students from Charles Sturt, University of Canberra and the Australian Catholic University The inpatient team is supported by the multidisciplinary team made up of a pastoral care team, Physiotherapist, Occupational therapist, and a social worker. Other multidisciplinary support can be utilized from the Calvary Hospital campus. The team is also supported by approx. 52 trained volunteers from Palliative Care ACT, who rotate through the inpatient unit. They companion and support clients and families, and provide simple cares such as preparing drinks, assisting with meals, laundry and other supportive tasks.

3 Inpatient room (photo courtesy of Rachel Bilton- Simek 2013) Community Specialist Palliative Care: To be assessed for admission to the community specialist palliative care service, a referral written by a health professional is required. Health professionals may include GPs, community nurses or a treating medical or nursing team in a hospital. The Home Based Palliative Care team provides palliative care services to patients and families in their homes in the ACT. The home based palliative care team is made up of a specialist palliative care doctor, specialist palliative care registered nurses and members of the multidisciplinary team; including an occupational therapist, (dividing time between community and inpatient services), a Physiotherapist (dividing time between community and inpatient services), a social worker and the pastoral care team. Our overnight service is supported by the senior night nursing staff and nurses from The Canberra Hospital LINK team. The aim of the Home Based Palliative Care team is to promote the comfort and wellbeing of people with terminal illness. This not only includes physical comfort (managing pain and other distressing symptoms) but also the emotional, spiritual and psychological wellbeing of patients and their families. Our focus is on improving the quality of life of both the patient and their family. We achieve this aim by: Advising and supporting the primary care team (e.g., general practitioners, community nurses) in the provision of palliative care. Managing distressing symptoms. Teaching the family how to care for the patient. Providing equipment to support the patient to stay in the home setting as long as possible. Providing 24 hour telephone advice (and home visits if necessary) Providing support to the bereaved. Patients with home based palliative care are visited according to need. Some are visited daily while others are visited weekly or fortnightly. Some, with minimal care needs, are only contacted by phone while others, if stable, are discharged. Home based palliative care does not routinely provide assistance with personal care needs (such as showering) but can refer to other organizations if this is necessary. Other care needs, (such as dressings, routine injections) are managed by the community nursing service

4 with whom we work closely. Home based palliative care is able to refer patients and families to the Palliative Care ACT Volunteers Service if this is requested. (We have approx. 40 trained volunteers who provide this support) The Palliative Aged Care Service supports Residential Aged Care Facilities (nursing homes and hostels) it is staffed with a nurse practitioner and senior specialist palliative care nurse. Our palliative care specialist doctors (GP referral needed) and pastoral care team are also available to visit patients in residential aged care facilities. As well as volunteer support from Palliative Care ACT (they have approx. 20 trained volunteers supporting these residents). The Outpatient Clinics allow ambulant patients to be seen by our specialist palliative care medical specialists and nurse practitioner and operate four, four hour clinics per week. As well as a monthly MND clinic at Phillip Health Centre. New clinic rooms for outpatient consultations (Photo courtesy of Rachel Bilton- Simek 2014) Hospital Consultancy Service: Palliative care specialists provide a consultancy service to all ACT public and private hospitals following referral from the treating specialist. Within The Canberra Hospital and Calvary Public Hospital the service includes specialist palliative care nurses. Bereavement Care: The social workers offer bereavement support or counselling to families or friends of patients of the palliative care service. The service offers support in bereavement to all our families of patients who have been with the home based service or have come to Clare Holland House. Palliative care ACT service send a card offering support and written information just after someone has died, and again at the first anniversary. Families are welcome to contact the social workers for support or counselling at any time in their bereavement. In conjunction with this the pastoral care team arranges regular reflective services for bereaved families. Families of patients who have been with the home based service or who have come to Clare Holland House will receive an invitation and are welcome to attend when they can. These services are free of charge.

5 Education: Palliative care education is an integral role of Calvary Health Care ACT and Clare Holland House. A full time palliative care educator is based at Clare Holland House and the role extends through the local health care sector. Within the scope of specialised palliative care the role promotes the specialist knowledge and skill base of staff within the service. This is done by ongoing in- service education across clinical disciplines, and offers mentorship and support for others involved in palliative care education and support in all settings. The educator is also responsible for providing palliative Clare Holland House Functions room care information and raising palliative care awareness and thinking throughout Calvary Health Care ACT. This is achieved with the assistance of the Calvary Learning and Development team. The educator maintains onsite support for new and experienced staff, as well as recent graduates any students attending placements at Clare Holland House. The educator also maintains contemporary research and articles relating to palliative care practice and research. The educator is available to participate in projects that promote the provision of palliative care and give rise to community discussion around issues of death and dying. Social Work: Our social workers are able to provide information, resources and support for social, practical and psychological or emotional needs to patients and their families. They are available at the hospice and can also visit patients homes. These Social workers are practiced at liaising with government departments such as Centre Link, ACT Housing and the Public Advocates Office and are aware of other agencies that can support patients and their families. Pastoral Care: The Pastoral Care Team offers: Spiritual care, assisting patients to explore questions of identity, meaning, and fundamental issues of life and death Emotional and spiritual support for patients and families. Opportunities for reflection for patients in the context of their personal beliefs and values An environment and resources for meditation and worship for persons Clare Holland House chapel (photo of unknown source)

6 of all faiths and belief To contact, as patients and families request, a Minister, Priest, Monk, Rabbi, Pundit, or significant religious figure of your choice Support for rituals that are significant to patients and their families A safe place to express feelings with freedom Time out and opportunities for staff to debrief and cope Support to the education program, either directly or through the PEPA program. Occupational Therapy: We have an occupational therapist (OT) who assists patients and families to have appropriate equipment and support to suit individual client s needs, especially at home. The OT is focussed is on independence, mobility and safety. The OT will assess patients homes with patients and families and make recommendations to support care at home. The OT will often make suggestions about equipment (including rails) or minor modifications to beds, toilets and bathrooms which may help with independence and safety. Equipment is organised and accessed from the ACT Equipment loans service and is free of charge. Our OT also attends the outpatient MND clinic, offering assessment and support to clients as required. Physiotherapy: Physiotherapy can be offered to a patient receiving home based palliative care or an inpatient. A physiotherapist can offer a variety of services including assessment and advice on safe personal mobility. This includes: Walking, transferring from bed to chair, moving around in a bed, etc. Organising provision of the right walking aids and other equipment like splints, collars, etc. Assistance in the management of lung conditions Assistance in the management of Lymphoedema (swelling) Prescribing exercises to help with strength and endurance Education of carers is also included Support of nursing staff in provided safe mobilisation and care. PEPA is a Program of Experience in a Palliative Approach (PEPA). PEPA aims to improve the quality and accessibility of palliative care services to people with life limiting conditions and their families. The contract for this program is conducted by Calvary ACT from the Clare Holland House site.

7 PEPA provides a broad range of health care professionals the opportunity to increase their experience, knowledge and skills in the delivery of the palliative approach. In the ACT this is achieved through supervised clinical placements, workshops and post placement support. Our service has some key features including: We are currently undergoing our 3 rd cycle of NSAP review. We utilise PCOC tools throughout our service. We use PalCare as our electronic medical record throughout the service and our Inpatient unit is the first pilot site in the ACT to utilise MedChart for prescribing an administering medication. When staff were asked why or how they managed to work in the Palliative care speciality they said: It s actually very enjoyable and a privileged way of nursing Ward RN Di It s a special area to work in and special people work in it! Ward AIN Bruce Others came up with words like Challenging, rewarding and fulfilling Our community CNC said We have a lot of laughs- and enjoy a great team Our OT said : I see the challenges that our patients face as a normal part of life- there s a lot of sadness, but mostly you see the positive aspects of human nature and that s very life affirming One senior RN points out I work with living people- only a fraction of my work deals with death and dying...