Palliative care angels supporting the needs of under 65s and their families

Having a loved one diagnosed with a terminal illness is tragic at any age, but if the person is under 65, it creates additional difficulties for patients and their family.

Community and Oral Health Nurse Unit Manager Vicky Sinclair said this was where Community Palliative Care (CPC) Under 65 service angels come in, showing kindness and unwavering support for people and their loved ones at the end-of-life.

“The CPC Under 65 Service is compassionately helping support these families and patients to come to terms with their diagnosis, and to pass away at home if that is their wish,” she said.

“These patients are ineligible for many funded non-government organisation practical supports and home care packages due their age and terminal diagnosis.

“The Moreton Bay and Brisbane North home visiting community palliative service is helping patients maximise their quality of life and is guiding and supporting families to prepare for life without their loved one.

“The aim is to support end-of-life care within the home.”

In the last three months the CPCS service has visited around 550 patients and families in Moreton Bay and Brisbane North homes or consulted with them through telehealth.

“For people aged under 65 receiving a life limiting diagnosis is not only traumatic, it causes so many challenges and hardships,” Vicky said.

“Patients and families need compassionate guidance, emotional support and in-home care.

“Historically, these patients have endured extended stays in an acute setting due to their ineligibility to access funded supports in the home.”

CPCS currently has a rapid 24-hour response time for all under 65 hygiene/respite referrals. As a publicly funded service, there is no cost to the patient.

“The service is made up of specialist palliative care medical, nursing and allied health staff,” Vicky said.

“If a patient requires shower assistance, the initial assessment is performed by an occupational therapist to review the home environment and equipment requirements.

“For bed-based care assistance, a registered nurse attends the home to support with symptom management and regular review and reporting to a clinical nurse case manager.”

Respite care is also an essential part of the service being offered, which allows the carer to have a rest, attend an appointment or simply to go out and buy birthday or Christmas gifts.

Social workers provide vital emotional support, helping the patient to prepare, and the family to prepare for life after their loved one passes.

“We also support the patients to prepare memory boxes to create their legacy and provide comfort to their loved ones after their death,” Vicky said.

The CPCS Under 65 service has been permanently established following a successful trial over the past few years, with referrals made through a patient’s hospital or a GP.

CPC is part of Community and Oral Health which delivers around 26,000 episodes of care to patients in their home or nursing home on a palliative care pathway.