INsite talks to Hospice New Zealand about the realities of palliative care.
INsite: What does palliative care typically involve?
Hospice NZ: The World Health Organisation (WHO) has defined palliative care as ‘the active total care of patients whose disease is not responsive to curative treatment’.
Palliative care affirms life and regards dying as a normal process, neither hastens nor postpones death, and provides relief from pain and other distressing symptoms. It integrates the psychological and spiritual aspects of patient care as well as offering a support system to help patients live as actively as possible until death. Palliative care also extends to patients’ families, offering a support system to help families cope during the patients’ illnesses and in their bereavement.
Palliative care therefore recognises that cure or long-term control of disease is no longer possible and is therefore concerned with quality rather than quantity of life.
Caring for people with life-limiting illness includes an understanding of the physical, psychological, cultural, spiritual, intellectual, and social dimensions of care. Palliative care must be based on a philosophy that each person is a unique individual with unique needs. Everyone must be treated as a whole person.
Excellent communication and a team approach is the key to effective palliative care and in meeting the needs of people with life-limiting illness. Nurses, carers, physicians, and all members of the interdisciplinary team are like different musicians playing together in a symphony, whose movements are orchestrated by the needs of the person.
INsite: What are the biggest challenges in palliative care?
Hospice NZ: From a national perspective the challenges we face as an organisation are around:
- Workforce pressures. With workforce shortages existing and looming even larger – for example, palliative care medical specialists – we are going to have work in innovative ways, supporting our colleagues in primary and aged residential care to ensure people get the care they need irrespective of their setting.
- An ageing population. We are seeing an increase in chronic conditions that have a palliative care need.
- Collaboration between health providers. This is currently happening at a national level with Hospice NZ, the Ministry of Health, and the Palliative Care Council working together. Moving forward, we need to work within our regions and collaborate with the palliative care community. Locally, we need to work together to ensure everyone who needs palliative care gets the support they need at the right time.
- Awareness of hospice services. This is always a challenging area of our work as often people are unaware or unsure of what services hospice provides – or believe certain misconceptions about what palliative care is about.
Many people believe hospice is about a building, when in fact, it is a philosophy of care.
The majority of hospices have inpatient facilities where people go for respite, symptom and pain management, or during their last days – but in fact, the majority of people are cared for in their homes in the community.
Our goal is to help people make the most of their lives, to live every moment in whatever way is important to them.
Depending on when our services are sought, living every moment can take on a different meaning. It might be going to watch a sporting or cultural event; it might be time with family and friends, through to holding someone’s hand or feeling the sun on their skin through a window. The most important aspect is that we celebrate that that person is alive and ensure they are receiving the care and support both they and their family need.
The hospice philosophy extends beyond just the physical needs of a person and extends to their emotional, spiritual, and social needs as well. Everything we provide is completely free of charge.
INsite: What does the HNZ Fundamentals of Palliative Care education programme entail?
Hospice NZ: In 2009, a Ministry of Health national stocktake into palliative care service provision identified the need for nationally consistent education programmes to support generalist palliative care providers.
To address this need, Hospice New Zealand developed a nine-part learning series: The Fundamentals of Palliative Care. It was completed in late 2011.
This education programme was designed to assist member hospices to support and educate residential care staff members who are working with residents requiring a palliative approach to their care. It is available to anyone working in aged care facilities, regardless of their designation.It is truly an interdisciplinary education resource.
The programme consists of nine learning packages, a participant workbook for each package with pre- and post-learning activities and teaching presentation notes. A certificate is awarded to the participants for each learning package following completion of a post-learning reflective evaluation.
A collaborative teaching approach can be undertaken utilising the skills of gerontology educators/nurse specialists/doctors and those of the specialist palliative care team to impart knowledge – this may be the educators, grief counsellor, doctor, or any member of the interdisciplinary team with the most appropriate knowledge.In this way, we bring together the best knowledge and skills from both gerontology and palliative care to support the care of our older people.
The programme is presently provided free of charge to remove barriers to the provision of training and is provided on-site at the residential care facility.
The nine learning packages cover the following topics:
1. The Essence of Palliative Care
2. Ethical issues in palliative care
3. Pain and Symptom Management
4. Palliative care for people with chronic illness
5. Palliative care for people with dementia
6. Communication skills
7. Last days of life
8. Loss and grief
9. Caring for Ourselves.
In 2013, we hope to develop the learning packages for home care and acute hospital care.
A practitioner’s reflection
CHRIS MURPHY, Community Liaison and Educator – Palliative Services, Mary Potter Hospice, Wellington shares her thoughts on how hospices can work alongside aged care to care for residents with palliative care needs.
Collaboration and partnership is the key to providing a shared care approach to older adults and their families, whether they are living independently or in a provided care setting. The blend of expertise and experience across the staff at the aged care facilities and the visiting hospice staff means the range of needs of the residents are met appropriately.
It is important that the specialist hospice staff respect the work of the nurses and GPs as they may have known the resident and the family and whānau for a number of years.
We aim to add value and expertise to enhance the care already provided.
The support that can be available to staff includes specialist clinical assessments and visits, a 24/7 telephone specialist support and advisory service, and an education service.
Specialist multidisciplinary community teams provide specific advice on the management of care and symptoms for residents experiencing complex issues. They also assist with referrals and transition for specialist and complex palliative care, if necessary.
There is a wide range of educational opportunities delivered by hospices and available for staff working in the aged residential care setting.
Workforce issues, such as staffing, varying knowledge and experience, and the ability to provide backup to release staff for training, present a number of challenges, and we have had to accept that one size does not fit all. Education is provided at a range of venues including on-site at the care facility.
The style of delivery ranges from a short informal session at the report handover to one-day intensive workshops delivered at a formal venue such as the hospice education centre. We aim to deliver at various times to capture staff working shifts and to capture bigger numbers, including breakfast and evening meetings. The topics provide knowledge and skills to work with people requiring a holistic palliative care approach: physical, social, emotional, cultural, and spiritual. The presenters involve many members of the hospice clinical staff. Regular meetings with management assists with planning a service that meets the needs of staff and promotes a safe delivery of palliative and end-of-life care.
There are many benefits for residents and their families from a good hospice/care provider partnership.
Older people may face a number of health issues as they approach the end of life. Associated problems and symptoms also increase and these can be managed and supported by the expertise of their care workers. However, this requires a range of skills and expertise.
The aim is to support older people to remain in their place of choice and to avoid moving them to an unfamiliar setting at the end of life.
In many areas, the care staff and the visiting GPs are the primary providers of palliative care and end-of-life care in an residential aged care setting.
The facility staff and GPs are supported by the local specialist hospice palliative care service. The blend of expertise and experience across the two services ensures that the resident’s needs are met appropriately.
Collaboration and partnership is the key to providing this shared care approach for older adults (and their families), whether they are living independently or in a care setting.
It is important that the spThe knowledge of experience of the nurses and medical staff is variable as it is just part of their work. Many need further knowledge and skills, and many need to recognise and access the support to deal with the issues they face as they work with people who are dying.
The family and whānau may experience issues of loss, grief, and bereavement. Specialist counsellors and social workers may be available to provide care and support to the family and whānau or advice to the on-site staff.
GPs are supported by the Medical Consultants in Palliative Medicine. Symptom management can be very complex when a resident has age-related issues such as dementia, and a collaborative approach to medical prescribing is essential. This can be provided through assessment visits or via the telephone on a 24/7 basis.