There’s a pathway for every journey.

Diagnosis

One of John’s brothers drives him to
the respiratory specialist in
Townsville who his General
Practitioner referred him to. They
weren’t expecting such bad news.

Treatment +/- surgery

The Townsville Cancer Centre works with the Ayr Hospital Nurse Navigator to coordinate admissions, day unit appointments and other outpatient care at Townsville University Hospital, as well as a My Aged Care referral for services at home.

Transport difficulties

John misses some appointments in Townsville. His brother has trouble getting time off work when the day or time changes. John tried the community bus but missed getting home once because his appointments ran late.

Gluyas Rotary Lodge

John regularly stays here when receiving treatment in Townsville. The Cancer Council Qld coordinator and hospital social worker talk with John about his deteriorating health, his wishes and the services available to him. After many of these discussions, John employs a caretaker for his farm.

Support services

John receives funded support through one of the few local service providers. They can take him to
appointments in Townsville but it takes up most of his funded support.

Transition to comfort care

During an admission at Ayr Hospital, John decides he doesn’t want to continue with treatment due to the side effects and the travel.

Specialist Palliative Care

The Ayr Hospital team refer John to the Specialist Palliative Care Rural Telehealth Service (SPaRTa) for advice on his breathlessness and pain. SPaRTa organise contracted community nursing for palliative care in the home.

John’s condition deteriorates

John’s siblings, family and service providers attempt to fulfill John’s wish to die at home. John’s care needs exceed the family’s capacity. After a number of hospital admissions, John dies at the Ayr Hospital.

Bereavement

John has no children of his own. Some of John’s siblings and their children disagree with John’s
choices at the end of his life and contest his will. All family members decline bereavement support offered by the hospital and funeral home.

Primary Care

Gerry is very embarrassed talking to the nurse about the blood in his urine and nearly falling over at night going to the toilet. He sent his wife in to buy a urinal bottle from the pharmacy. Gerry is not looking forward to travelling to Townsville to talk to more doctors about it. He doesn’t understand what they meant when they said PSA.

Specialist appointment change

Gerry’s son has difficulty organising time off to drive his parents 1.5hrs to Townsville for investigations and appointments with geriatricians, urologists and radiation oncologists. The bus doesn’t match up with his appointment times

Support services

The social worker helps Gerry apply for community services through My Aged Care. He receives support with transport but declines for anyone to come into his home. Gerry’s friends are worried. They help as much as Gerry will allow them.

Hospital admission

Gerry is admitted to Charters Towers Hospital several times with dehydration and pain. Telehealth appointments with radiation oncologists and geriatricians are organised by the nurses. The doctors complete an Acute Resuscitation
Plan with Gerry. His wife is scared, she doesn’t know if this means he will die soon. Gerry doesn’t want to talk about it. Gerry and his wife do not know how to explain what is happening to their son.

Specialist palliative care

During an admission to Charters Towers Hospital, Gerry is referred to Specialist Palliative Rural Telehealth service (SPaRTa).

Advance care planning

Over a few months, the SPaRTa team and community health nurse help Gerry to share his wishes and what matters most to him.

Specialist Palliative Care

During an admission to Charters Towers Hospital, Gerry is referred to Specialist Palliative Rural Telehealth service (SPaRTa).

In home support

Gerry can see his wife is becoming more frail. He accepts services for domestic assistance, nursing support and personal care coming into their home. Contracted community nursing for palliative care in the home is organised by SPaRTa.

Final wish, grief & loss

In between Gerry’s many admissions to Charters Towers Hospital, his son takes him to the pub for one last
drink with his mates. Gerry is the happiest he has been in months. Gerry dies at the hospital with his wife present. She doesn’t want to leave him.

Support

Ivy’s daughters are both retired. They are both very close to their mother and promised they would care for her so she didn’t need to go into residential aged care. Ivy’s grandchildren help as much as they can.

Transport

The Queensland Ambulance Service crew have responded to emergencies when Ivy has been unwell or had a fall, as well as transferred her to & from Townsville and later assisted with transport to appointments when Ivy couldn’t walk.

Charter’s Towers Hospital care

The multi-disciplinary care team at the hospital know Ivy and her family well. Ivy has seen many doctors, nurses and allied health
professionals come and go over the years. The occupational therapist and physiotherapist have completed home visits to organise equipment and provide training to the family. Ivy is referred to My Aged Care for ongoing support.

Tertiary care

Ivy often gets transferred by ambulance to Townsville University Hospital (TUH) for specialist care. The Clinical Nurse Consultant for Parkinson’s is Ivy’s main contact but the whole team know her well. Ivy’s daughters continue to care for Ivy when she is in hospital as her care needs are complex. On the last visit, the geriatrician diagnoses Ivy with dementia.

Complex medication regime

The pharmacists at the hospital always prioritise seeing Ivy quickly
as her medications are time critical. While the general practitioners and community pharmacists have provided regular education and reassurance to Ivy and her daughter over the years.

Online support

The pharmacists at the hospital always prioritise seeing Ivy quickly
as her medications are time critical. While the general practitioners and community pharmacists have provided regular education and reassurance to Ivy and her daughter over the years.

Career burnout

Ivy is eligible & waitlisted for a Level 4 Home Care Package. She was allocated a Level 2 package until a Level 4 was available. Ivy’s daughters use as much assistance as they can, but since Ivy started having symptoms of dementia it has been hard. Ivy’s daughters are very distressed when they have no choice but to use residential aged care for respite.

Residential aged care

Ivy has increasing & prolonged admissions to Charters Towers Hospital. Ivy’s daughters are very distressed when they have no other option but to organise residential aged care for Ivy. Ivy stays in the hospital waiting for a bed to become available. After moving into the aged care home, Ivy has a new GP and continues to have frequent hospital stays.

Complex bereavement

Ivy’s daughters feel upset & guilty for many years that Ivy lived & died in
an aged care facility. They knew she didn’t want this.

Royal Flying Doctors (RFDS)

RFDS doctor takes the call from Sarah’s mother. The doctor provides advice via telehealth & prescribes from the Medical Chest located on the property. RFDS organises Sarah’s retrieval. Sarah’s Mum leaves 2 sons with her husband and travels with Sarah in the RFDS plane to Townsville University Hospital.

Bad news diagnosis

Brain tumours diagnosed in Paediatric Intensive Care Unit at Townsville University Hospital.

Transition to comfort cares

Queensland Children’s Hospital advise there are no curative treatment options for this type of cancer. Referred to Paediatric Palliative Care Service. Sarah’s family stay at Ronald McDonald House in Brisbane while specialists trial medications to manage Sarah’s pain and seizures.

Discharge planning

Transferred to TUH Paediatric Oncology ward. NQ Oncology Coordinator Nurse and Social Worker are primary contacts for family.

Sarah and her family return home

Sarah’s Mum & Grandmother receive training from nurses about how to care for Sarah.

Assessubg medication/Enteral feeding supplies

Regular 1.5 hour drive to Hughenden Multipurpose Health Service.

Regular Telehealth

Sarah’s family are overwhelmed with the number of services &
decline further support from Cancer Council Qld or other services. Sarah’s family stay at Ronald McDonald House in Townsville.

Sarah’s condition deteriorates

Sarah spends the last month of her life at the Townsville University Hospital. Sarah’s family work with the hospital team to organise ‘memory making’ activities e.g. photos & footprints.

Bereavement support

Social worker assists family to engage a funeral director &
navigate best fit bereavement support services.

Primary Care

Joe drives 1 hour to Richmond to see the General Practitioner (GP). The Hughenden GP has been on leave for 2 weeks & there is no replacement.

Colonoscopy

Joe drives 4 hours & plans to stay overnight in a hotel but receives a cancer diagnosis from the gastroenterologist. He remains in Townsville for further imaging so the specialist can advise on treatment options.

Cancer Council Queensland

The cancer care nurses refer John & his wife to the Cancer Council hotline to access accommodation and some counselling support.

Specialist care at Townsville University Hospital

Over the following year, Joe has multiple hospital admissions, oncology day unit appointments and other outpatient appointments with surgeons, medical oncologists, radiation oncologists, infectious disease specialists, radiation therapists, dietitians, social workers and physiotherapists.

When Joe returns home, between treatments he is referred to visiting allied health clincians and tele-chemotherapy at Hughenden Multi Purpose Health Service (MPHS) is considered.

Transition to symptom control

Oncology Nurse Navigator talks to Joe & his wife about the benefits of palliative care as the oncology treatments are focused on symptom control.

Home care

Flinders Shire Council Community Care increase in-home care as Joe’s needs increase. When Joe has admissions to the MPHS, Community Care, the GP and Hughenden MPHS work with Joe’s family to ensure they have the required support at home.

Specialist palliative care

The oncologist refers to Specialist Palliative Care Rural Telehealth Service (SPaRTa) who meet Joe at the Day Unit and then provide ongoing telehealth with the GP and Hughenden MPHS. Joe’s wishes are documented.

Joe’s function declines

The oncologist refers to Specialist Palliative Care Rural Telehealth Service (SPaRTa) who meet Joe at the Day Unit and then provide ongoing telehealth with the GP and Hughenden MPHS. Joe’s wishes are documented.

Dying at home

The Hughenden MPHS aged care coordinator supports Joe’s family and friends to care for him at home with the help of regular telehealth with SPaRTa.

Joe is transferred to Hughenden MPHS several times so his family can have some respite and medications can be optimised. Joe returns home with MPHS nurses assisting family with cares. Joe dies 2 days later.

Respiratory Specialist Care Townsville

It took Geoff a long time to make an initial appointment with the respiratory specialist. He was
always too busy with the cattle.
Over the years, Geoff has been flown to Townsville a few times with severe chest infections. Geoff feels uncomfortable with all of the people & lack of fresh air in the hospital there.

Visiting physiotherapy

Early on, the physiotherapist’s monthly visits often coincided with mustering, while recently Geoff & his wife have been too unwell to drive
in.

Primary healthcare

Geoff’s wife pressures him to go to town regularly to see the General Practitioner & pick up his
medication. Once when Geoff was unwell the doctor did a home visit. The pharmacist often reminds Geoff on how to use his inhalers & when to take his medication.

Hospital-based ambulence

Geoff’s wife calls 000 after finding him in the garden confused & more short of breath than usual. Geoff’s son is off mustering. The ambulance driver and registered nurse arrive 45 minutes later. They know Geoff well.

Richmond Multipurpose Health Service (MPHS) admissions

The nurses know Geoff refuses to be transferred to Townsville again. Geoff feels useless now but refuses any supports or services.

Telehealth

The nurses often telehealth with the respiratory team during Geoff’s admissions.

Carer stress

With no formal supports, Geoff’s son & daughter in law find in very difficult to manage the property and care for Geoff’s parents between hospital admissions. Geoff’s other son visits for 3 weeks to help.

Specialist palliative care

Geoff’s family are increasingly distressed about his confusion & breathlessness. They agree to a referral to Specialist Palliative Care Rural Telehealth (SpaRTa).

Bereavement

Geoff dies at the Richmond MPHS surrounded by his family. Geoff’s family are upset but also relieved that Geoff is no longer suffering.

Diagnosis

Ruby’s General Practitioner (GP) has attended Renal, Cardiology and Endocrinology specialist telehealth appointments with Ruby in the past. The GP has also assessed Ruby when she returned exhausted from her last 1000km round trip to see the cardiologist in Townsville.

Treatment +/- surgery

Ruby sees the visiting diabetes educator and allied health services from Townsville once a month.

Transport difficulties

Richmond Aged Care (RAC) workers are a constant presence in Ruby’s life for many years. The RAC workers know Ruby wants to stay at home and doesn’t want to move. They notice a blank Statement of Choices form on Ruby’s bench but she refuses to talk about it.

Gluyas Rotary Lodge

RAC calls 000. Hospital-based ambulance responds. It takes Ruby’s only daughter 2 flights and 48hrs to arrive from Brisbane.

Support services

Ruby’s mobility doesn’t improve. She refuses to move to an aged care facility in Brisbane near her daughter. The nurses support Ruby & her daughter through their
difference of opinion. Ruby’s daughter is very distressed when she must return to Brisbane.

Transition to comfort care

Nurse recommends the Medical Superintendent refer Ruby to Specialist Palliative Care Rural Telehealth (SpaRTa) to assist with pain management, nausea and advance care planning.

Specialist Palliative Care

Richmond MPHS nurses provide ongoing care and receive support from SpaRTa as required via telehealth. Ruby’s ageing friends visit occasionally.

John’s condition deteriorates

Nurse calls Ruby’s daughter. SpaRTa recommend a syringe driver. The recommended medications are not available in Richmond. It takes 48hrs for the medications and Ruby’s family to arrive.

Bereavement

Ruby dies 1 day after her daughter & grandchildren arrive. The MPHS nurses support the family. The SpaRTa social worker assists the family with referral for ongoing bereavement support.

Primary care & investigations

Janine attends a general practice in Townsville as it is easier to make appointments around work commitments. Private pathology and radiology services are a 5 minute walk from Janine’s office at the university.

Specialist cancer care

Janine is referred to the medical oncologist & surgeon at the Townsville University Hospital. Janine meets a breast care nurse who becomes Janine & her families main contact throughout years of investigations, biopsies, surgery, chemotherapy & radiation. Janine receives care in inpatient surgical & oncology wards, oncology day unit & outpatient clinics. She has appointments with many specialists, nurses, social workers, radiation therapists, pharmacists, occupational therapists & physiotherapists. Janine also participates in some clinical trials.

Impact on family life

Janine takes leave from work. Her husband organises income protection payments through Janine’s superannuation provider. The family regularly stay with Janine’s parents to avoid travelling back & forth from the Island. They also help get the kids to school. The children don’t like seeing their mum without any hair and have periods of not wanting to go to school or
sports.

Fund raising

Janine has looked at the Cancer Council & Breast Cancer network websites. Janine’s work colleagues invite her to an afternoon to raise funds for breast cancer research.

Peer support

Janine’s oldest daughter looks at the Canteen website. She and her sister use the Canteen Connect App to talk to other kids who have parents with cancer.

Palliative treatment

The breast care nurse explains to the family that the chemotherapy and raditation is not curative and the purpose is to manage Janine’s symptoms. The medical oncologist refers to palliative care.

Specialist palliative care

Janine & her husband are overwhelmed with meeting a whole new team of doctors, nurses, physiotherapists, occupational therapists, pharmacists & social workers & telling their experience over again.

Declining function

The amount Janine can do for her children decreases and, with time, this also impacts caring for herself. The palliative care outreach nurses call regularly and organise contracted community nursing service for palliative care in the home. The Occupational Therapist does a home visit to Janine’s house and her parent’s house. Equipment suppliers deliver aids to both homes. Janine is spending less time at her own home now, but it is important to her kids that they are on the Island.

Palliative care centre & bereavement

Janine has several inpatient admissions. She has day leave where possible to attend events at the kids’ school if she is well enough. Janine dies at the centre surrounded by her family. The social worker, funeral home and school guidance officer all listen & provide advice to Janine’s family.

Diagnosis

Jayden has missed his last 3 annual health checks with the General Practitioner (GP) because he has been busy with work and coaching his son’s footy team. The GP performs a thorough health check and refers Jayden for an urgent endoscopy.

Treatment +/- surgery

Jayden has an endoscopy at Townsville University Hospital (TUH). After this, Jayden is advised by his gastroenterologist that they have found a large tumour which was biopsied and sent for testing.

Transport difficulties

Jayden receives care from the multi-disciplinary team who specialises in gastrointestinal cancers at TUH. After his outpatient appointment, the Indigenous Health Liaison Officer (IHLO) sees Jayden is shocked and unsure what having advanced oesophageal cancer means. The IHLO supports Jayden and his family, and Jayden starts palliative chemotherapy.

Gluyas Rotary Lodge

The IHLO and social worker assist Jayden when he starts chemotherapy at the oncology day unit and needs to stop working. Jayden doesn’t want to do a My Aged Care application but would
like some support from the Cancer Council Queensland for advice regarding financial planning. Jayden goes to footy and fishing but he often sits there and doesn’t talk to anyone.

Support services

The nurses are worried when
Jayden misses his chemotherapy at the day unit. When Jayden returns the next week, he tells the IHLO
there has been sad news and he has been on Murray Island with his family.

Transition to comfort care

Jayden is taken to the Emergency Department and admitted to the inpatient Oncology ward with neutropenia. It is during this admission that the IHLO discovers that some of Jayden’s family think he is going to get better because he is receiving chemotherapy. The IHLO organises a referral for Jayden to assess Integrated Team Care funding on discharge to assist with transport and support during medical appointments.

Specialist Palliative Care

The IHLO makes sure Jayden’s wife and brother are there when the palliative care team see him for the first time in hospital. Jayden’s brother will act as a spokesperson and shares relevant information with the extended family.

John’s condition deteriorates

Palliative chemotherapy is no longer providing symptom relief. Jayden is eating and drinking less. His difficulty swallowing means, he misses medication regularly. Jayden is admitted to the Palliative Care Centre for the first time. He is overwhelmed by the number of new doctors, nurses, dietitians, pharmacists, speech pathologists, occupational therapists (OT) and physiotherapists he meets.

Bereavement

Between hospital stays, contracted nurses provide in-home care and medication assistance for Jayden. Initially, there was a lack of communication about Jayden’s preferences for men’s care.
Palliative care doctor, OT, and physiotherapist also visit. During his last Palliative Care Centre stay, IHLO coordinates family support. A priest conducts a blessing. After Jayden’s passing, a traditional burial is organized by the family.

Lorraine has a fall

The personal care worker at the residential aged care facility (RACF) finds Lorraine on the ground beside her bed on a Saturday morning. The registered nurse reviews Lorraine and calls an ambulance. Lorraine doesn’t appear to be in pain. The nurse is concerned because Lorraine takes anticoagulant medication.

Queensland Ambulence Service

The paramedics have difficulty communicating with Lorraine. They transfer her to the Townsville University Hospital (TUH) for the third time this year. She is not given
any analgesia.

Emergency Department (ED)

The junior doctor orders pathology
& radiology. Lorraine isn’t talking so a history can not be taken. No analgesia is provided. Lorraine’s Next of Kin (NOK) cannot be contacted. ED Pharmacist completes a medication history so usual medication can be commenced. The pharmacist shows the doctor The Viewer in the electronic medical file where there is a copy of Lorraine’s Advance Health Directive (AHD) and Enduring Power of Attorney (EPOA).

Frailty Intervention Team (FIT)

The clinical nurse can’t find the transfer information from the RACF but gets collateral information over the phone. Following an assessment, the FIT nurse discusses pain management & the possibility of Lorraine having hypodelirium with the treating doctor.

Surgery

Lorraine has been found to have a fractured femur. The orthopaedic surgeons recommend surgery for pain management and quality of life. Lorraine’s EPOA consents and assists the surgical doctors with making an Acute Resuscitation Plan before surgery. After the surgery, the orthogeriatricians diagnose Lorraine with dysphagia and refer to the speech pathologist.

Declining function

Lorraine is not able to be rehabilitated to her pre-injury baseline and is discharged with multiple recommendations from the physiotherapist, speech pathologist and geriatricians.

Returns to RACF

Lorraine returns home to the RACF. The nurse & care workers are able to hoist Lorraine to a recliner chair
most days. Lorraine has limited social interactions apart from her family’s visit on the weekends and the lifestyle coordinator’s music mornings.

Family

Lorraine’s son finds it very difficult to visit his mother. He previously enjoyed a cup of tea with her once a week but she can no longer hold the cup and seems to choke on her water.

General Practitioner

The GP reviews Lorraine 4 days after her discharge during his weekly visit. The family ensure they are present and have a long discussion with the GP about the significant changes in Lorraine – especially her decreased oral intake and difficulty taking oral medication. A new Advance Care Plan is established with a Statement of Choices (Form B) that outlines the ceiling of care for Lorraine including no further transfers to hospital.

Speech Pathology

The speech pathologist contracted by the RACF reviews Lorraine as it is important to her family that she drinks comfortably. Education is provided to the family about Lorraine’s risk of aspiration and strategies to make swallowing safer. Lorraine is prescribed thickened fluids so she no longer chokes.

FIT ED Subsitutive Care

Lorraine has a fever, productive cough and a new oxygen requirement, and her GP is unable to review her today. FIT visit Lorraine
at the RACF and provide support to the nursing staff and the family about the signs that this may be Lorraine’s last days of life. Medications are charted to ensure she is as comfortable as possible. The FIT Doctor contacts Lorraine’s GP to advise of assessment and interventions provided

Pastoral care

The chaplain provides support to Lorraine’s daughter and assists to bring the family together. They organise a blessing.

Primary Care – Palm Island Community Company (PICC)

Mary has her health check with the female doctor, who has always been good with women’s business

Investigations – Joyce Palmer Health Service (JPHS)

Mary’s blood test shows raised tumour markers, while the X-ray of Mary’s pelvis reveals a tumour.

Health Literacy/Cultural Support – PICC & JPHS

The health workers & nurses help Mary organise travel to Townsville. They explain the situation many times to help Mary’s shocked family understand.

Diagnosis / Specialist care – Townsville University Hospital (TUH)

After biopsies & many scans, the multi-disciplinary cancer care team at TUH diagnose Mary with cancer
of unknown primary with bone metastases in Mary’s hip and spine.

Chemotherapy (TUH)

Mary stays with her niece when in Townsville for chemotherapy or scans. The TUH Indigenous Health Liaison Officers (IHLO) & JPHS health workers support Mary & her family

Declining function

Mary’s family don’t understand why Mary isn’t getting better after the chemotherapy. The physiotherapist & nurses provide education, training & equipment.

Pain management at home – Specialist palliative care

JPHS organise telehealth appointments with the specialist palliative care service at TUH. Mary is very worried about having medications in the house & how to keep the children safe.

Final hospital admission

Mary is showing signs of a spinal cord compression & her pain medications need close monitoring. JPHS nurses & health workers spend many hours preparing Mary’s family for her death.

Bereavement

25 members of Mary’s family gather at the hospital in her last days. After Mary dies, the nurses assist the
family to bath & dress Mary. While the council helps plan Mary’s burial.

Dialysis – Joyce Palmer Health Service (JPHS)

The team & other patients know Samuel well. They often share stories about family & talk about the
footy results.

Specialist Care

The renal team from Townsville University Hospital (TUH) visit JPHS every month. Samuel is not eligible for a kidney transplant due to his poor overall health.

Visiting services & Palm Island Community Company

Non-government allied health providers work with JPHS doctors, nurses & health workers to complete a NDIS application for equipment & ongoing support services as
Samuel’s health & function decline.

Psychological support

The multi-disciplinary team refer Samuel to a counsellor, but he misses the appointments. Samuel gets support from his friends at dialysis, the junior football club and church.

Sorry Business

While in Townsville for sorry business, Samuel is admitted to TUH with alcohol intoxication and a wound infection. He is admitted to the Intensive Care Unit (ICU) with sepsis.

Substitute Decision Makers

The ICU doctors have difficulty identifying Samuel’s substitute decision maker and establishing Samuel’s wishes. The renal team assist, as they have known Samuel for many years.

Family Conflict

In Samuel’s final days at TUH, the indigenous health liaison officers (IHLO) organise a visiting roster, as there is conflict between his Bwgcolman-based and Townsville-based family. John dies in the ICU at TUH.

Difficulty returning home

The financial cost to return Samuel to Bwgcolman for his funeral delays arrangements and results in many family disagreements.

Bereavement

In the months following Samuel’s death, many of his friends miss dialysis. Several of Samuel’s family members struggle to go to school or work. Some start drinking and smoking more.

Regular Primary Care

Jane visits her general practitioner & community pharmacist every month. She also sees the podiatrist & diabetes educator at the medical centre.

Specialist Cardiologist Care

Jane’s son takes multiple days off work to take her to Townsville for appointments and investigations including cardiologist, anaesthetist, angiogram & echocardiogram.

Increasing Hospitalisation

Jane has more admissions, more often to Ingham Hospital. Jane & her family are overwhelmed by so many people talking to them about acute resuscitation plan, wills, enduring power of attorneys, shower chairs, walkers & possibility of residential aged care. A My Aged Care referral is made for ongoing support.

Family support

Jane’s family travels to Ingham regularly as Jane needs more help than services can provide.

Telehealth Appointment With Cardiac Team

No other treatment options available.

Care Coordination

Nurse Navigator liaises with family, GP & hospital doctors about a referral to specialist palliative care for pain and oedema management advice.

Specialist Palliative Rural Telehealth Service

Regular telephone & videoconferencing to assist with symptom control, advance care planning & Medical Aids Subsidy Scheme applications.

Care team

Jane’s family have a roster so someone is always at home with her. The contracted community nursing service increases services and provides training to the family with the hospital occupational therapist.

Bereavement

Jane’s daughter becomes unwell so Jane is admitted to the hospital. Jane dies in the palliative care room a week later. Jane’s family struggle to return to their old routines after caring for their mum.