Lulu Shapiro and Megan Paul, palliative care nurses

According to Palliative Care NSW, most people say they would like to die in their homes but only 17% are able to do so. Lotus Palliative Care, a new service for the Northern Rivers region, will help more people have palliative and end of life care at home.

With decades of nursing experience behind them, Megan Paul and Lulu Shapiro believe Lotus Palliative Care can make a positive difference to the quality of life remaining for people diagnosed with a life-threatening illness or disease, and for their support people.

‘We can’t change the fact that a person is receiving palliative care,’ said Megan, ‘but we can ensure people, and their loved ones, are free from avoidable stresses such as hospital admissions.’

Assistants-in-nursing attend a home visit in the morning and provide personal care such as showering, skin integrity checks, mouth care and respite. They then convey any areas of concern to the registered nurse who attends a home visit in the afternoon to manage all the clinical care and symptoms including syringe driver management. The service works closely with the patient’s GP to ensure all symptoms, including pain and nausea and the distressing symptoms associated with a serious diagnosis, are managed well. In addition, support and respite for carers and loved ones is available.

Lotus Palliative Care is a seven-day-per-week service with overnight on-call phone support. Carers can ring day or night and speak to a Registered Nurse or troubleshoot any problem or concern. 

The service is available to everyone and can be engaged at any stage – before a person even enters a clinical setting or when a choice is made to transfer back home. 

The cost is covered for anyone with a Level Four Aged Care package, under the NDIS or Veteran Affairs, and under some private health insurance funds. Others have the option to pay privately.

Megan and Lulu decided to set up Lotus Palliative Care when Silver Chain Group, the service they had both worked for, ceased offering palliative nursing care in the region on 30 June 2021. After seven years of service, Silver Chain Group’s contract was not renewed by NSW Health, and all the staff were retrenched. 

‘After working in oncology and then as a palliative care nurse with Silver Chain, I really wanted to see people in this region continue to have the choice to die at home, with a professional and stable service to manage needs as they progress,’ said Megan. 

This is a commitment shared by the staff of Lotus Palliative Care, all of whom were formerly employed by Silver Chain Group.  

Although this extensive experience means that Lotus Palliative Care has long-standing relationships with many GPs, Local Health Districts , Palliative Care Consultants and Local Hospices, Megan and Lulu are eager to meet with more GPs to discuss how the service can assist other patients. They also hope to educate the community about the possibilities available for end-of-life care so that informed decisions can be made. 

According to Lulu, ‘Many people don’t realise they have a choice. But it really is possible to die at home surrounded by your memories and your people. Many of the people we’ve had the privilege of working with have said that there is something deeply reassuring and meaningful about being surrounded by the familiar at this time – both for the person we’re providing direct, clinical care to and their loved ones.’

Palliative care at home is very much a meeting of compassion, warmth, and kindness, and for Megan and Lulu and their team of highly skilled and experienced nurses, this work is more vocation than a ‘job’.  

‘Lotus Palliative Care, like the many palliative care doctors and nurses I’ve had the privilege to work with, is informed by a profound awareness that it is an honour to care for people during these times and a belief that people should have a dignified and peaceful death,’ said Lulu. 

‘Our promise is to affirm life and respect dying as a normal process while also bringing a deep care and respect to cultural, spiritual and diversity differences for the person dying and their loved ones.

For more information about Lotus Palliative Care, call 6680 4800.