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Decision-making and End-of-Life-care in Emergency (DandELinE) Toolkit

Implementation Guide 2019

Decision-making and End-of-Life-care in Emergency (DandELinE) Toolkit - 2 -

Decision-making and End-of Life-care in Emergency (DandELinE)Toolkit

© State of Queensland (Queensland Health) 2019

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For more information contact: Healthcare Improvement Unit, Clinical Excellence Queensland, Department of Health, GPO Box 48, Brisbane QLD 4001, email [email protected].

An electronic version of this document is available at https://clinicalexcellence.qld.gov.au/improvement-exchange/terminal-phase-care-pathway-emergency-department

Disclaimer: The content presented in this publication is distributed by the Queensland Government as an information source only. The State of Queensland makes no statements, representations or warranties about the accuracy, completeness or reliability of any information contained in this publication. The State of Queensland disclaims all responsibility and all liability (including without limitation for liability in negligence for all expenses, losses, damages and costs you might incur as a result of the information being inaccurate or incomplete in any way, and for any reason reliance was placed on such information.

Authors Dr Ena Maleckas FACEM DIP. PALL CARE MBBS Emergency Physician, Sunshine Coast Hospital and Health Service (SCHHS) Bernadette Nolan RN B. App. Sci – Nursing Clinical Nurse Consultant, SCHHS Suzanne Robson RN CNC Palliative Care Clinical Nurse Consultant, SCHHS Dr Alison Craswell RN PhD Research Fellow, University of the Sunshine Coast; Visiting Research Fellow, SCHHS Acknowledgements Funding for the development of the Decision-making and End-of Life-care in Emergency (DandELinE)Toolkit was provided by Clinical Excellence Queensland, Department of Health. Development of the DandELinE Toolkit was a joint project between Sunshine Coast Hospital and Health Service and Clinical Excellence Queensland, Department of Health. The Clinical Excellence Queensland is committed to supporting projects which deliver better health outcomes for Queenslanders.

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mailto:[email protected]

mailto:[email protected]

https://clinicalexcellence.qld.gov.au/improvement-exchange/terminal-phase-care-pathway-emergency-department

https://clinicalexcellence.qld.gov.au/improvement-exchange/terminal-phase-care-pathway-emergency-department


Acknowledgement of the Time is Precious (TIP) pathway developed by Liverpool Emergency Department, NSW which was adapted in the development of DandELinE.


Contents

Decision-making and End-of Life-care in Emergency (DandELinE) overview ..... 6

Navigating the toolkit ........................................................................................... 7

Objectives of DandELinE ......................................................................................9

Evidence for DandELinE ................................................................................... 12

Benefits of DandELinE ...................................................................................... 12

What is the DandELinE Pathway? .................................................................... 13

Decision-making and End-of-Life-care in Emergency (DandELinE) ....................14

Background – Palliative care in the ED ............................................................. 15

National and International guidelines ..................................................................15

Step 1: DandELinE – pre-implementation planning .......................................... 16

Identify a senior ED clinical leader for the DandELinE model – clinical champion16

Scoping demand in your ED ...............................................................................16

Baseline data collection ......................................................................................18

Identify benefits and risks of implementation ......................................................18

Identify key stakeholders ....................................................................................19

Resource funding considerations........................................................................21

Step 2: Localising the guide .............................................................................. 23

Define the scope ................................................................................................23

Establish the Clinical Governance ......................................................................23

Clinical documentation .......................................................................................24

Localise the DandELinE process pathways ........................................................24

Step 3: Identifying / creating appropriate clinical spaces for caring for the dying patient 25

What if our ED has NO SPACE! .........................................................................25

Step 4: Identifying / creating appropriate equipment and resources to enable care for the dying patient ...................................................................................................... 26

The need for other resources: Staff ....................................................................27

The need for other resources: After death ..........................................................27

Step 5: Staff education and capacity building ................................................... 28

Step 6: Launch! ................................................................................................. 28

Develop a communication strategy .....................................................................28

Step 7: Review and follow-up evaluation .......................................................... 29

Abbreviations .................................................................................................... 30

Appendix A - The DandELinE process .............................................................. 32

Appendix B – Example calculation to scope the extent of the issue.................. 37

Appendix C – Evaluation Tool (Eager et al. 2004) ............................................ 38

Source: Eagar K, Senior K, Fildes D, Quinsey K, Owen A, Yeatman H, Gordon R and Posner N (2003) The Palliative Care Evaluation Tool Kit: A compendium of tools to aid in the evaluation of ................................................................................................ 38


Appendix D – RAIDL tool .................................................................................. 39

Appendix E – Equipment for DandELinE resource trolley ................................. 40

Appendix F – Coaching Tips for DandELinE care interventions ........................ 42

Appendix G - Useful websites and learning modules for further information ..... 43

Appendix H – ‘When Someone Dies’ Printable resource .................................. 46

Appendix I - Example health service communications ...................................... 47

References and further reading ........................................................................ 49


Decision-making and End-of Life-care in Emergency (DandELinE) overview Emergency Departments (ED) are busy and noisy places where the focus is on rapid assessment and care for people who present with an acute emergency condition. This can include people approaching the end stage of life, during which time care needs may be at odds with ED’s cultural emphasis on saving lives and “restoring health” (McCallum et al. 2018). Caring for palliative patients in the ED can be difficult and stressful for all involved. However, recognition, communicating with and caring for these patients in the ED environment is a fundamental role for ED staff and a critical first step to improving this situation (Cooper et al, 2018). Early identification of patients who are at the end of life can lead to more appropriate and timely decisions regarding the best treatment plans and disposition planning. This toolkit outlines the DandELinE process, designed to support the staff in the ED to make when making decisions about the best treatment and care for patients through the end of life. The process includes:

• Identifying patients who are nearing end of life or imminently dying;

• Locating previous Advance Care Planning discussions/documents;

• Determining the appointed Enduring Power of Attorney (EPOA) for health matters or substitute decision maker (SDM);

• Discussing treatment options with the patient or EPOA/SDM ;

• Documenting of outcomes and discussion;

• Implementing of the Care Plan for the Dying Person;

• Medication prescribing guidelines for pain and symptom management; and

• Disposition planning.

Why Dandelion for DandELinE?

There are metaphors and folklore meanings that align with the intended meaning for using this symbol in

End of Life Care in Emergency Department. In one of our first team meetings, the team was discussing

the goals of the process as the ability to allow patients when they felt their time was coming to an end, to

determine how, where and with whom they would choose to spend their last moments. Our Administration

Officer became quite tearful and said she was imagining a field of Dandelions floating away on the wind…….

• The name Dandelion comes from a French word and means “lion’s tooth” – strength, courage,

bravery, pride, family (communication / connection) and is also a ‘sun’ symbol. It also represents

innocence and freedom.

• Dandelions are the harbinger of spring and evoke memories of wish making.

• There is a childs game and a story (‘Mary’s Meadow’ & Other Tales of Fields & Flowers -

Juliana Horatia Ewing) about telling time using a Dandelion clock - the story begins with :

EVERY child knows how to tell the time by a dandelion clock. You blow till the seed is all blown

away, and you count each of the puffs—an hour to a puff. Each person takes a different

number of “hours” to blow all the seeds away , just as people are all different.

• Dandelions have the strength to grow almost anywhere and are not too precious or significant.

They represent those little things we think are irritating but actually have tremendous value:

go back and take a second look!

• They are also great travellers – their seeds travel on the winds that carry them, far from the

original plant.

• As a weather barometer, the seed ball will only extend for release when the conditions are just

right.

And then there’s this: https://www.karengolland.com/the-nature-of-things.html

http://www.telelib.com/authors/E/EwingJulianaHoratia/prose/marysmeadow/dandelionclocks.html

https://www.karengolland.com/the-nature-of-things.html


Navigating the toolkit The DandELinE toolkit is an integral reference tool for implementing the DandELinE process including the decision-making pathway, resource trolley, patient handouts and other resources. DandELinE implementation follows a structured project methodology for Quality Improvement. The following steps are designed to help you implement the DandELinE process in your ED:

Step 1 – DandELinE - pre-implementation planning (define your need for change, identify your baseline, understand current status, get a team together, gather the troops, utilise right stakeholders)

Step 2 – Localising the guide (making DandELinE your own through PDSA cycles) Step 3 – Identifying / creating appropriate clinical spaces for caring for the dying patient (this is a great opportunity to enhance staff and consumer engagement!)

Step 4 – Identifying / creating appropriate equipment and resources to enable care for the dying patient (be creative - utilise what you have in a unique way – upcycle and repurpose: the sky is the limit)

Step 5 – Staff education and capacity building (utilise opportunities for education in multiple modalities to suit all adult professional learners, don’t underestimate the value of inter-disciplinary team engagement in a simulated learning environments)

Step 6 – Launch! (it’s your time to shine! Shout it from the hilltops, but how to make sure the right people are listening) Step 7 – Review and follow-up evaluation (how to tell if you’ve made a difference)

This toolkit provides a platform supporting the development and implementation of DandELinE. It should be read and used in conjunction with any applicable standards, service provision documents and local industry requirements.

The elements of this toolkit: • Are based on evidence and referenced; • Are applicable to hospital administrators, management, Palliative Care and ED staff; and • Provide evaluation tools for implementation.

Key to this toolkit To augment the information in this toolkit, coloured boxes and boxes with symbols have been used to highlight key information, summarise information and bring attention to the work you are required to do. Directions to further information is also provided. Sample documentation, educational information and evaluation tools have also been provided either within the appendices or through links within the document.

Symbols used within the toolkit

Useful Hint These boxes are designed to provide you with key information (hints) or summaries relating to the section you are reading and may direct you to further information.


Attention This symbol provides information on areas that are important to identify or monitor to facilitate smooth implementation of DandELinE

Data / Material

This symbol requires you to source the recommended material or utilise the suggested materials – some work to do

Meetings This symbol highlights recommended meetings.

Readings This symbol refers you to recommended readings.


Objectives of DandELinE

The objectives of DandELinE are to:

• Improve outcomes for dying patients in the ED; • Build palliative care capacity for the ED staff; • Support ED staff through provision of resources to assist in caring for dying patients; and • Prioritise recognition of palliation as fundamental to ED care.

Proposed patient outcomes:

• wishes are respected; • care is in the patient’s best interest; • symptoms and pain are managed appropriately; • dignity is maintained; • patients are cared for in the most appropriate environment in line with their wishes; and • families are supported.

Proposed health service outcomes:

• Improve knowledge and capacity of ED staff in recognition and care of patients at the end of life; • To meet the Quality Statements outlined in NSQHS Standard 5 (Comprehensive care) • To meet the Quality Statements outlines in the Statewide strategy for end-of-life care 2015.

The DandELinE model is an innovation, focusing on early assessment of patients at or near end-of-life in the ED, aimed at person centred decision making, and preferred or appropriate disposition. Excluding box one and two of the flowchart, the process pathway is not designed to be strictly followed in sequential order – the information provided serves as a reminder to consider that a palliative approach to care may be the appropriate and best emergency care plan. Figures 1 and 2 below illustrate the journey of a typical end of life care patient through the ED with and without the DandELinE process. These figures are provided to emphasis the potential improvement that DandELinE may have.

Cure sometimes, Treat often,

Comfort always - Hippocrates


Figure 1: Patient Journey through the ED

Scenario without DandELinE

Amy is in pain and is transferred to the ED by Ambulance

The ED is busy when Amy arrives

Amy is moved to an ED resus bay for assessment. The clinician considers all options.

ED primary RN conducts baseline observations and assessment including pain management. The team

commences treatments and interventions per protocols to treat her presenting condition with

curative intent.

After running an exhaustive range of tests, the team of health professional determine that Amy’s pain is

related to her pre-existing cardiac condition and contact specialist cardiac team for a review and

admission to hospital.

Amy is advised she will be admitted, and a bed is being sourced in CCU. The family have been

contacted and told Amy is being admitted.

The primary ED nurse manages Amy’s cares and interventions, investigations while in the resuscitation

bay in the ED.

Amy dies a short time later in the resus bay alone and in pain. The family are contacted again to advise

them of her death.

Amy’s body remains in the ED resus bay until the family arrive some hours later. Once they have arrived and payed their respects, the body is

transferred to the morgue.


Figure 2: Patient Journey through the ED with DandELinE

Scenario with DandELinE

Amy is in pain transferred to the ED by Ambulance

The ED is busy when Amy arrives

Amy is moved to an ED bay for assessment. The clinician considers all options including palliation. The

DandELinE process is accessed and considered.

Amy, her family and the health professional team decide that a palliative approach is her preferred and

most appropriate plan of care, The DandELinE pathway is put in progress and care plan for the dying patients/iEMR power plan commenced per protocol.

ED primary RN conducts baseline observations and assessment including pain management.

Nurse liaises with family, GP, substitute decision maker to determine goals of care.

Amy and her family prefer to remain in hospital as dying is imminent and she is still in significant pain. Amy is moved to the dedicated DandELinE space in the ED (Short Stay) where her family can stay with

her.

Team use DandELinE resources (Tips) to implement appropriate pain management interventions which

includes sub-cutaneous access for pain relief.

Amy’s pain is well controlled, she is comfortable and surrounded by her family. Amy dies peacefully a short time later. The family are supported in their

bereavement after her death.

Health Professional provides family with carer information pack from resource trolley and blanket is

given to patient. Family / carers are shown where lounge and tea / coffee amenities are available.


Evidence for DandELinE A multidisciplinary team from the Sunshine Coast Hospital and Health Service (SCHHS) developed the DandELinE process and associated resources. These were based on evidence from the literature, adaptation of the Time is Precious (TIP) pathway developed by Liverpool Emergency Department, NSW, and results from a survey provided to the staff to identify their needs in relation to implementing a palliative approach within the ED. Ongoing research is evaluating the impact of these resources on staff, family members and carers of patients attending the ED at the end of life.

Benefits of DandELinE The benefits include:

For patients, Families and/or Carers

Improved patient care • Patients at end-of-life are recognised early during their

patient journey / on arrival to ED and an appropriate plan of care is established in consultation with the patient, their family or care giver and/or substitute decision maker;

• Patients at end-of-life receive person-centred care in their preferred / most suitable physical location, at home, in hospital or in the ED;

• Symptoms are managed, and care is provided using evidenced-based best practice guidelines; and

• Patients and carers are provided with relevant information to assist them with understanding common signs, symptoms and outcomes of the dying process. Support contact numbers (including after hours) are also provided in this pack.

For clinical staff

Improved care delivery and coordination • Coordination of care within the ED aligned with goals and

ceilings of care; • Coordination of additional assessment by specialist

medical or allied health professionals; • Clinical support tools and assessments; and • Co-ordination of care with bed manager, medical team

and appropriate ward where necessary.

Heath Services

Meet the HOSPITAL AND HEALTH strategic objectives: • Improving everyone’s experience of health care

throughout our health service; • Optimising the health outcomes of our community through

collaboration and education; and • Delivering sustainable, safe and high value services

driven by continuous improvement, research and education.


What is the DandELinE Pathway? The Decision making and end of life care pathway can be seen in Figure 3. Critical to implementation of this pathway and associated resources in the ED is the recognition by staff that for some patients, dying is one possible outcome for a patient who presents to emergency. For process documents see Appendix A. Enacting the pathway will provide support to the ED clinician who is caring for a patient where deterioration is not reversible, or the patients wish is to refuse reversible treatment.


1. Discuss options and overall treatment plan with patient / SDM 2. Consensus agreement that the person is likely to be dying 3. Clinical decision to provide palliative approach to care 4. Document in health record 5. If required contact social worker <Ph No. X> or A&TSI HLO <Ph No. X>

Under the law patient with capacity may refuse life-sustaining treatment, even if this results in their death or would cause it to happen sooner.

Commence the Care Plan for the Dying Person

• Min 2hrly symptom assessment and comfort observation • Follow the Care Plan for the Dying Person Ongoing Assessment form

Treating Medical Officer

• Complete / review ARP • Contact Consult Palliative Care team as needed • Review Medications

o Stop those not required for comfort (including IV fluids) o Aim for subcutaneous administration route o Chart end-of-life PRN meds

Dignity and comfort are the priority

Does the patient prefer to die at home?

Discharge

Contact: • Pall Care – <Ph No. X> or switch

A/H re: - Advice re meds (Reg/Consultant A/H) - Arrange community follow-up (Nurse)

• Pharmacy - <Ph No. X> in hrs., consider - ‘Scripts for subcut infusion & PRNs - EDDMAR or IMAR (if Nursing Home patient) - Subcut Medication Infusion Device Chart for Nursing Home patient

• GP – for follow-up / notification • Provide required pain / symptom

relief • Provide Information Pack inc. copy

of the ARP and “Not for CPR” letter

Admit

• Contact PACH - <Ph No. X> to confirm / arrange fast track admission to relevant ward/facility

• Refer for admission under appropriate specialist

• Complete IMP and R/V end-of-life PRN meds

• Subcut Medication Infusion Device Chart for inpatient

• Cont. Care Plan for the Dying Person and Ongoing Ax form

Immediate transfer to single room - SSU Rm 15 • Continue as per Care Plan for the

Dying Person and Ongoing Ax form • Provide adequate pain and symptom

relief – consider subcut infusion • Transit Unit – <Ph No. X> as an

alternative if required / appropriate • Complete Deceased Body Checklist

as per local procedure - Deceased patient care and management: adult and paediatric patients

Transit unit may be appropriate Transport – <Ph No. X> may be available for <X> transfers or <X> to <X>

Utilise the Surefuser™+ for transfers to other facilities

Ensure bereavement support for the family / carer Support / debrief with staff as necessary Resources available in DandELinE trolley

Complete required documentation for deceased patients – see DandELinE trolley

Is the patient imminently dying?

Deterioration in patient’s condition indicates the patient could be dying

Consider the reversibility of this condition

Will providing active treatment or life sustaining measures: • Align with the Substitute Decision Maker (SDM) or patient wishes? • Lead to a meaningful outcome for this patient? • Be consistent with ‘good medical practice’?

Treat condition as required MO - Discuss and record future management options and ARP with patient / SDM

Seek consensus opinion and discuss with senior medical officer

Yes No

Decision-making and End-of-Life-care in Emergency (DandELinE)

Yes No

No Yes

Figure 3:


Background – Palliative care in the ED Both qualitative and quantitative research has investigated the phenomenon of palliative care in the ED. It is recommended that emergency palliative care is a necessary and therefore fundamental purpose of emergency departments (Cooper et al, 2018). However, education and experience of ED staff in the recognition and care of patients nearing the end of their life is found to be lacking (Gloss, 2017; Shearer et al, 2014; Well et al, 2015). Symptom management in the dying patient is crucial to maintaining comfort and dignity. Presentation to the ED by palliative patients is often a last resort when needing attention to symptoms such as breathlessness or pain management (Green, Gott & Wong, 2016). The environment of the ED may not always be conducive to communication, care planning and comfort measures (Copper et al. 2018). However, community resources for appropriately managing such symptoms may not be optimal (Cooper et al, 2018). Patients with palliative care needs who present to the ED report that the environment impacts on the quality of care due to prolonged waiting times, and the perception that their needs are of a lower priority. ED staff report that the ED is not an appropriate place to die. Additionally, ED staff are concerned that they are not skilled to recognise patients at the end of life, nor provide appropriate care in the ED. Development of this toolkit for implementation of the DandELinE process aims to address some of these concerns and acknowledge the ED as a place where palliation can be managed when required.

National and International guidelines

This toolkit references a variety of national and international guidelines that focus on palliative or end of life emergency care. More information about care of end of life patients in the ED can be found in links provided at the end of this toolkit.

Project Management Guide This toolkit will assist in the processes required to implement DandELinE, however local factors including existing resources and demand will influence the particular approach taken in each Hospital and Health Service (HHS). The following steps are presented as a guide only; you may not need to follow each step, nor in the order presented. DandELinE implementation follows a structured project methodology for Quality Improvement. The following steps are designed to help you implement the DandELinE process in your ED.

Quality Improvement methodologies Institute for Healthcare Improvement Quality Improvement Essentials Toolkit http://www.ihi.org/resources/Pages/Tools/Quality-Improvement-Essentials-Toolkit.aspx Sokovic, M., Pavletic, D., & Pipan, K. K. (2010) Quality Improvement Methodologies – PDCA Cycle, RADAR Matrix, DMAIC and DFSS. JAMME 43(1) p 476-483. http://pdfs.semanticscholar.org/e348/8a24ab1197670544b4e08dc6173f396eada9.pdf

http://www.ihi.org/resources/Pages/Tools/Quality-Improvement-Essentials-Toolkit.aspx

http://www.ihi.org/resources/Pages/Tools/Quality-Improvement-Essentials-Toolkit.aspx

http://pdfs.semanticscholar.org/e348/8a24ab1197670544b4e08dc6173f396eada9.pdf

http://pdfs.semanticscholar.org/e348/8a24ab1197670544b4e08dc6173f396eada9.pdf


Step 1: DandELinE – pre-implementation planning - define your need for change, identify your baseline, understand current status, get

a team together, gather the troops, utilise right stakeholders

This step outlines the work needed to get your organisation ready for the change required for implementation of DandELinE in the ED.

Before implementing DandELinE, it is important that the need is identified, and change management principals considered. Genuine and lasting change is sustainable when the ED staff and management at all levels realise the necessity for change and advocate for it.

Identify a senior ED clinical leader for the DandELinE model – clinical champion

Central to the success of DandELinE is identifying an ED physician with a special interest in the provision of palliative care. This enables DandELinE model to have senior medical support to facilitate the implementation and acceptance and embedding of the model. Senior staff and departmental support of a champion in this role is paramount.

** Please note that this resource will not discuss project management and implementation methodologies. It is recommended that if resources permit, a project officer, with a sound understanding of implementation science assist with project planning and implementation.

In addition, departmental support of non-clinical time to be allocated to the implementation team to establish DandELinE is critical to success.

Identify ED physician champion for DandELinE If the ED Physician role is not suitably filled, progress with the DandELinE model will be at significant risk.

The first steps for the clinical lead (or project officer if available) are:

Scoping demand in your ED

Critical to model development is a sound understanding of the numbers of people who die in the ED or within 24 to 36 hours after presentation. Depending on the software your hospital data is stored in, this can be sourced from ieMR/FirstNet/EDIS or other ED data collection software. See tables below for data items to collect and Appendix B for an example of scoping the need using such data to calculate impact.


Table 1: A list of potentially useful data items to calculate demand

Description Data item for collection

Evaluation

Time of arrival to the ED/hospital

Arrival Date Arrival Date minus Departure Actual At = length of stay in the ED

Time of departure from the ED

Departure Actual At

Date of death – this date is usually only present for an in-hospital death

Died At Can be used to identify patients dying in the ED or within 24-36 hours after arriving

Assigned hospital Medical Record Number

MRN Medical Record Number

Unique identifier for linking of information with inpatient hospital data

Age at time of presentation Present age in years

To identify average age

Gender Present gender To determine percentages of Males and Females

Person identifies as Aboriginal, Torres Strait Islander or both Aboriginal and Torres Strait Islander

Indigenous status To determine percentage of Aboriginal, Torres Strait Islander or both Aboriginal and Torres Strait Islander presenting in this cohort

Data from the hospital admission management database Hospital Based Corporate Information System (HBCIS) should contain the information in the following table for older people admitted to hospital via the ED. Linking of the information via the Unit Record Number or admission episode will provide further information on hospital admissions. Contact your Data manager to determine how this can be achieved. Table 2: Potentially useful inpatient information from HBCIS

Admission to a ward within the ED Description Data item for collection Evaluation

Time of admission to a ward WITHIN the ED i.e. Short Stay Unit (SSU) (not hospital inpatient)

Admitted at Date time of admission minus Departure Actual At = length of stay in the ED in addition to initial ED stay

Time discharged from ward within the ED i.e. SSU

Departure actual at

Admission to hospital as inpatient

Departure destination To determine how many people were admitted

In hospital mortality Died at Died as inpatient

Admission to hospital as inpatient Time of admission to hospital as inpatient

In-patient admit date / time

Discharging ward/unit Discharge ward


Length of stay as inpatient (separate to stay in the ED)

fractional length of stay

In hospital mortality Died at Died as inpatient

Perform a qualitative review of each patient’s death. This will determine the: quality of death including symptom/s and PRNs administered; Medical Emergency Response Call / Code Blue (or equivalent) activation; presence of new or reviewed Acute Resuscitation Plan or Advance Care Plan; use of Clinical Guide for the Dying Patient; involvement of Palliative Care specialist/team; adherence to management of the deceased patient procedure. The ACSQHC End of Life Care Audit tool could be considered for an annual review of deaths in the HHS.

Baseline data collection

A staff survey will identify the baseline perceptions of palliative care in the ED, their perceived skills and knowledge. This may assist with, identifying gaps to guide the development of specific educational for capacity building of end-of-life care skills for ED staff. Utilise ED staff meetings, common areas, email, communication platforms and education sessions to distribute staff surveys with reminders to increase response rate. A suggested survey can be found in Appendix C: “Evaluation tool 2.5 – Health Professionals not working in palliative care services”, a 10-item questionnaire (Eagar et al., 2004).

Eagar K, Senior K, Fildes D, Quinsey K, Owen A, Yeatman H, Gordon R, Posner N. (2004) The Palliative Care Evaluation Tool Kit: A compendium of tools to aid in the evaluation of palliative care projects. Centre for Heath Service Development, University of Wollongong. Retrieved from https://ro.uow.edu.au/chsd/5/

Additionally, collate existing process documents for care of patients at end-of-life within the ED, including processes relating to death certification and audit (if applicable), and care of the deceased protocols.

Identify benefits and risks of implementation

The review of your clinical and client outcome data (above) will give you some idea of the scope of end of life patients in your HHS. Now, it is important that goals of implementation as well as both the barriers and risks are also identified. This needs to be achieved during the engagement phase of implementation.

Identify and communicate the benefits ✓ Better outcomes for patients and families; ✓ Patient wishes determined and care delivered in accordance with these;

✓ Patient-centred collaborative approach to care planning;

✓ Earlier recognition of end of life and palliation as an appropriate care trajectory;

✓ Less stress for staff;

https://ro.uow.edu.au/chsd/5/


✓ Increased capacity building for end of life cares in the ED;

✓ Improved collaborative approach to care delivery across disciplines within the hospital and

community;

✓ Decreased LOS of patients identified to be at end of life within the acute areas in ED; and

✓ Alignment with principles of “Choosing Wisely” strategy – i.e. reduced unnecessary or futile tests,

procedures and admissions.

Identify and communicate risks Implementing a new model of care is challenging. Working with multiple stakeholders from different sectors of community health and the acute sectors can be complex.

There is a risk that some stakeholders (both internal and external) will erroneously view the DandELinE process as a barrier or prohibit care provision for the dying patient in the ED. DandELinE aims to improve patient choices and maintain person-centred care in the ED.

Suggested work to do: Review RISK Matrix, i.e. RAIDL tool (Appendix D) and if useful, create a similar tool

Identify key stakeholders

Stakeholders are important to ensure your implementation of DandELinE is effective. Primary stakeholders may include but are not limited to: ED nursing staff, GEDI nurses, senior ED medical staff, Palliative Care Physician/s and Nurse/s, Administration Officers, Allied Health (Social Work and Pharmacy), ED leadership team. Clinicians will be using this guide so should be involved in the creation and localisation of the process. They must also understand the benefits of the system, support the need for this change and be willing to engage with the model once it is implemented.

Identifying stakeholders, the key opinion leaders in the ED, is critical to successful implementation. Sometimes it will be hard to identify who will be positive (or negative) towards new implementation such as DandELinE. Inside the ED, everyone may be involved, including the Nurse Unit Manager (NUM), primary ED nurses, ED physicians and medical teams, administrative officers, triage, and of course, consumers.

Think about stakeholders outside the ED such as the business managers, MDT Educators, Allied Health professionals, the Ambulance Service, Bed Managers / Patient Flow, Operational staff, Aboriginal and Torres Strait Islander liaison, the Director of Nursing and other NUMS i.e. from MAPU/palliative care/oncology/renal/respiratory and other relevant wards. Identify how implementation of DandELinE will affect all stakeholders and communicate this.


Table 3: Example benefits for stakeholders of the Health Service and beyond

Stakeholder Role and example benefit NUM of ED • Leadership, role-modelling, key decision-maker

• Access to Nursing portfolio groups, offline and PDL time • Improved management of dying patients in the ED

ED Medical Director • Leadership, role-modelling, key decision-maker • Delegation to portfolio, access non-clinical/clinical

support time

Palliative Care Physician • Leadership, role-modelling, key decision-making • Expert clinical knowledge with up to date evidence-

based practices and guidelines • Direct admissions, avoiding sub-specialist care,

improved patient outcomes, improved staff and patient satisfaction

Allied Health Professional • Pharmacist: ➢ current knowledge of access to relevant and locally

stocked medications, and their prescriptions • Social Worker:

➢ expert knowledge and skills in conducting End of Life Care discussions, bereavement, and access to local support networks

➢ increased early and appropriate referrals

Aboriginal and Torres Strait Islander Liaison Officer / Worker

• Expert guidance regarding specific, culturally-appropriate considerations relating to local customs

• Raise awareness for advance care planning within local networks and community groups

Administration Officers • Key change agent • Expert knowledge of workflows and processes regarding

recording of ACP documents, early identification of potential patients, recording/updating of accurate Substitute Decision Makers contact details

Consumer representative or group

• Perspective on process as consumers often will differ in unexpected ways to clinicians

Operational support staff (wards persons/cleaning personnel/food services staff)

• Raise awareness and information sharing regarding care and management of the dying patient and their families in the ED, including use of door/room signage


Weekly meetings with key stakeholder group to establish and localise process Establishment meeting with external-to-the-ED stakeholder group for expert input and communication of process change

Similarly, identify community organisations that will refer patients to the ED or will be useful for referring patients to meet their needs in the community at the end of life.

Table 4: List of potential community organisations for patient, family referral

Community Stakeholder Useful information

Sunshine Butterflies; Bloomhill Cancer care (NGO’s)

Support and advice for patient’s families and carers

CHIP/GEDI Discharge planning

Palliative care community care providers (NGO’s)

i.e. Cittamani. BlueCare, Anglicare, Little Haven etc.

Provide direct nursing care in the home under palliative care program (government funded)

Equipment providers for hiring equipment

i.e. Nambour Home Health Care

Hospital beds, commodes, mattresses

Palliative care NUM Specialist Palliative care community service coordinator

Palliative care Allied Health Staff

Social work, Psychologist - for carer and bereavement support

PHN/GPs Providing communication of availability of service, coordination of care

Resource funding considerations

Identify where potential funding might be accessed to support ongoing DandELinE resources and non-clinical consumables. Sources may include:

- Hospital Auxiliary services; - Private practice trust fund; - Donations; - Volunteer groups (i.e. quilters, belonging bags, paintings, memory making kits etc.); and - Staff social events (i.e. dinners).


Johnson S (1998) Who Moved My Cheese? An Amazing Way to Deal with Change in Your Work and in Your Life. Putnum Adult: New York Manley K, Sanders K, Cardiff S, Webster J. (2011) Effective workplace culture: the attributes, enabling factors and consequences of a new concept – FoNS, International Practice Development Journal 1(2) http://www.fons.org/library/journal.aspx Kitson A, Harvey G, McCormack B. (1998) Enabling the implementation of evidence-based practice: a conceptual framework. Quality in Health Care, 7:149–158 Ireland, P & National Institute of Clinical Studies (2006) Taking Action Locally: Eight steps to putting cancer guidelines into practice. Melbourne, Australia: National Institute of Clinical Studies Grol R, Grimshaw J. (2003) From best evidence to best practice: effective implementation of change in patients’ care. The Lancet, 362 Queensland Health Related Policies and resources (NB: QHEPS internal access only) Organisational Change Management resources at: https://qheps.health.qld.gov.au/hr/employment-conditions/change-management-guidelines Organisational change - Change management guideline 2018

http://www.fons.org/library/journal.aspx

https://qheps.health.qld.gov.au/hr/employment-conditions/change-management-guidelines



https://qheps.health.qld.gov.au/__data/assets/pdf_file/0025/2219038/managing-organisational-change-guideline.pdf


Step 2: Localising the guide - making DandELinE your own through Plan-Do-Study-Act (PDSA) cycles

Define the scope

During these process design meetings, the SCHHS team realised that the DandELinE process was NOT limited to known palliative patients or even to patients of certain age or illness trajectories who presented to the ED. All patients, regardless of age, condition, presentation or illness, may need consideration of a palliative approach to care. In your ED, consider the data you identified in step one and which patients will benefit from DandELinE.

As suggested in step 1, stakeholder group meetings will be crucial in getting the process right for your health service. Process mapping sessions and ‘brain storming’ will be vital at this stage. The DandELinE process flowchart went through 38 versions before we got it right!

Establish the Clinical Governance

Clearly defined processes are required within each HHS to ensure governance for DandELinE. It is recommended that:

1. A local procedure or workplace instruction should be developed that defines where the clinical governances lies for each type of patient disposition.

2. Transitional communication with the continuity health care provider (i.e. GP or palliative care service provider) will be required to ensure comprehensive and safe clinical communication and clinical handover.

DandELinE patient identified in ED

ED treating team determine disposition in consultation with patient / family / SDM

Patient for discharge home to usual place of

residence

Patient for admission to

hospital

Patient for remain in the ED

Clinical governance with the GP or service provider following discharge from

hospital

Clinical governance with treating team that has accepted the patient

Clinical governance with the ED medical officer

managing the patients care

Figure 4: SCHHS Clinical Governance for DandELinE patients


Clinical documentation

Clearly defined procedures are recommended to ensure that there are clear guidelines for clinical documentation for your health service, including the

• required clinical records for patients at the end of life.

ieMR has a palliative care power plan which can be ordered, and includes care activities and prescriptions for symptom management.

https://healthqld.sharepoint.com/sites/SCHHS-ieMR-InfoHUB/QRG%20Documents/ieMR000268_Palliative%20Care%20Management%20Terminal%20Care.pdf

It is recommended that each HHS develop a clinical records and documentation procedure. An example procedure can be viewed via the QH intranet at: https://qheps.health.qld.gov.au/__data/assets/pdf_file/0021/2360190/001436.pdf

Localise the DandELinE process pathways

The process documents for implementing DandELinE in your ED can be found in Appendix A. The information relating to the resources, teams and links require updating to provide the user with the most recent local information.

Alternatively, your health service may have access to other professionals that would enhance the process and adding these service names and contact details will localise the process documents.

In the DandELinE process documents (Appendix A, page 2), ‘Discussing treatment options’ references the social worker, Aboriginal and Torres Strait Islander Hospital Liaison Officer and Spiritual/Pastoral care staff and volunteers. Your Health Service may not have access to these professionals and alternative decisions need to be made prior to implementation.




https://qheps.health.qld.gov.au/__data/assets/pdf_file/0021/2360190/001436.pdf


Step 3: Identifying / creating appropriate clinical spaces for caring for the dying patient

- This is a great opportunity to enhance staff and consumer engagement!

A significant barrier to providing excellent quality palliative care in the ED is determining the most appropriate space to facilitate cares for not only the patient, but their families also. Ideal requirements are:

- Private/single room; - Quieter clinical area (i.e. short stay or subacute area); - Ready access for family to tea/coffee facilities and toilets; and - Opportunities to access an outdoor area – if possible! (This was raised as great importance for

indigenous patients and their families by our Aboriginal and Torres Strait Islanders Liaison.

Identify and appropriate a suitable space in the ED for provision of quality end of life care i.e. private/single room in quieter area in ED, family room for discussions and privacy.

What if our ED has NO SPACE?

Not having a specific space does not mean you cannot use DandELinE, but it is optimal to success. If all else fails, you might consider alternatives that can be used as an identifier for all staff (including kitchen and operational staff) that a person is dying:

- attach a laminated DandELinE sign to the curtains surrounding the cubicle; - place the resource trolley beside the cubicle/trolley, as this can have a similar impact of

notification; - place a special quilt or bed cover on the patient’s bed; and - A coloured/special lamp on the bedside table (with appropriate test and tagging completed of

course).

The information you collected in the Implementation stage will be useful here if you need to approach Executive to leverage funding to appropriate physical resources.


Step 4: Identifying / creating appropriate equipment and resources to enable care for the dying patient

- be creative - utilise what you have in a unique way - upcycle and repurpose - the sky is the limit

A list of equipment suggested for the resource trolley can be found in Appendix E. Determine the equipment that is currently available to ED staff to facilitate symptom management and quality nursing cares for the dying patient, such as i.e. SureFuser, NIKI pump, Safe-T-Intima, patient belonging bags, mouth and skin cares. See Appendix F for instructions on their use. You may need to identify new/additional equipment (previously not stored in the ED) to be added to regular ED stock ordering to provide cares for the dying patient. For example, NIKI pumps were not part of the regular ED equipment list and were previously sourced from wards/Pall Care team. They were added to ED stock list for regular ordering and easier access in the ED. Once established, this equipment should be collated, and located in a central, easy to find, and consistent area. A simple yet highly effective solution is the creation of a DandELinE resource trolley (shown here). This simple, mobile, compact resource proved integral to embedding the process because it provided ready access to:

- Pre-prepared bags containing medication device equipment; - Palliative care documentation forms; - Appropriate clinical consumables; - Carer information; - Care of the deceased resources; - Handover Bags for patient belongings. See

https://www.health.qld.gov.au/sunshinecoast/bereavement-bag-design-resources ; and - Hand-made quilts donated by a local Quilters group.

The trolleys also serve to formalise and promote end of life care as a ‘treatment’ option, especially when stored next to various other clinical intervention trollies such as the “IV trolley”. Anecdotal evidence from SCHHS ED staff suggest that visualisation of the DandELinE trolley at a patient’s bedside, outside the curtains or door prompted staff recognition of a dying patient in the ED, and they were able to alter the behaviours accordingly, such as speaking more softly.

https://www.health.qld.gov.au/sunshinecoast/bereavement-bag-design-resources


The Story of the Quilts….

The quilts are donated by a local community quilting group and are given to patients receiving

chemotherapy in the Adem Crosby Centre - our local cancer therapy centre. Members of the

implementation team suggested a supply of quilts to provide any patient requiring End of Life Care

(EOLC) in the ED after a cancer care patient presented in ED with their quilt.

The ED staff member who provided EOLC to the patient used the quilt during this stage of care

and to lay the body out.

The family were greatly appreciative of this personal touch and the staff knew this gesture had

contributed to provision of person-centred care.

The need for other resources: Staff

If patient death is imminent, and they are predicted to die (see Appendix A) within the next 24hrs, it is suggested the patient remains in the ED (i.e. short stay area or similar) and moved to the previously identified private room/quiet area for end of life cares, if this is in line with their/family wishes. This addresses the potential barrier of ED length of stay measures while minimising bed moves. If the palliative care room or quiet area is unavailable (or you just don’t have a quiet area in your hospital ED setting), then consider referring the patient for admission and moving the patient to a single room on the ward as a priority. Transit unit may even be an option here. Predicting imminent death is not an exact science, so keep in mind that you may still need to consider referral to a hospice, transfer to a palliative care bed, private hospital referral (if patient consents), or discharge if appropriate with follow up organised. If the patient wishes to die at home, preparing the patient for supported discharge may require extra staffing resources.

The need for other resources: After death

The resource trolley will contain equipment such as shrouds, a body bag, tags and mortuary paperwork. Information for relatives and an end-of-life handover bag for patient belongings. If your volunteers are creating quilts this can also be given to the family. Appendix H has a copy of the printable resource “When someone Dies” which was developed by Social Work at SCHHS.


Step 5: Staff education and capacity building - utilise opportunities for education in multiple modalities to suit all adult

professional learners; don’t underestimate the value of interdisciplinary team engagement in a simulated learning environment

Collate existing process documents for care of patients at the end-of-life within the ED, including processes relating to death certification and audit (if applicable), and care of the deceased body protocols. Update existing or create new documents if required to reflect any changes as a result of the DandELinE process in your HHS. Implementation of the process will require consistent and repeated messaging until the process is embedded. The creation of local workplace instructions/procedures, posters and ‘how to’ guides will assist in this. ED and/or Palliative Care educators should utilise the results from the pre-implementation staff survey designed to measure staff views on palliative care to inform future education and training programs. Utilise evidence from the staff survey to identify gaps and design specific educational programs for capacity building of end-of-life care skills for ED staff. This may include education opportunities regarding:

✓ Confidence and being at ease with end of life communication, talking about death and dying with patients

✓ Legal requirements and ethical issues relating to patients with limited decision-making capacity

✓ Palliative care options and services ✓ Managing terminal delirium

See the end of this toolkit for some education resources in Appendix G and the reference list.

Step 6: Launch! - it’s your time to shine - shout it from the hilltops, make sure the right people are

listening! The meetings and education completed in the ED will raise awareness of the DandELinE process. Select a date to launch in the ED. Have a ‘display’ in the staff room (cake always draws attention!) with the trolley, procedural documents, pathways etc. on display for staff to familiarise themselves with the process and equipment. Have staff uniform / shirts / badges created.

Develop a communication strategy

Find your local communications team and/or develop a communication plan. Some suggested internal media releases are attached in Appendix I. Book a seat in as many meetings, forums and get into as many newsletter articles as possible. DandElinE seeds travel far on the right breeze – spread the word!


Step 7: Review and follow-up evaluation - how to tell if you’ve made a difference

Now your ED staff are educated and have access to the DandELinE pathway and associated resources you will see a change in practice in the ED. Executive and management of your health service will benefit from reviewing the measurable effects of this change. Ultimately, reviewing the program is designed to identify opportunities for improvement that may result in improved care delivered to patients their families and carers.

If you were able to survey staff prior to DandELinE implementation, think about repeating the survey approximately three months after launch. See Appendix C for that survey.

In addition, you can also collect data to:

• Review the data collection from step 1 (scoping the extent of the issue, people dying in the ED) • Review consumer experience, particularly staff, families and carers of patients who die in the ED • Conduct an End-of-Life Care Audit

https://www.safetyandquality.gov.au/our-work/comprehensive-care/end-life-care/end-life-care-audit-toolkit

Evaluation of any health service initiative is critical to providing robust evidence for practice in healthcare (Proctor et al., 2011). Consideration of a more formal evaluation can be made by clinical researchers who might apply for a foundation grant.




Abbreviations ACAT Aged Care Assessment Team ACP Advance Care Plan(ning) AGS Area Geriatric Service AHD Advance Health Directive ARP Acute Resuscitation Plan CGA Comprehensive Geriatric Assessment CNC Clinical Nurse Consultant ED Emergency Department EDIS Emergency Department Information Service EDDMAR Emergency Department Discharge Medication Administration Record EMR Electronic Medical Record EPoA Enduring Power of Attorney FACEM Fellow of the Australian College of Emergency Medicine FTE Full Time Equivalent GEDI Geriatric Emergency Department Intervention GP General Practitioner HITH Hospital in the Home iEMR Integrated Electronic Medical Record LOS Length of Stay MHAT Mental Health Assessment Team NOK Next of Kin NUM Nurse Unit Manager OT Occupational Therapist PHC Primary Health Care PHN Primary Health Network RACF Residential Aged Care Facility RN Registered Nurse SDM Substitute Decision Maker SMO Senior Medical Officer SSU Short Stay Unit SW Social Worker


DandELinE - PRN Medication Guidelines Chart ONE PRN medication for EACH symptom

Anticipatory prescribing is recommended for all symptoms Check ADR / Allergy for all medication options listed below

Consider replacing the patient’s usual symptom management medications with a subcutaneous infusion If uncertain about anticipatory prescribing for your dying patient or pain / symptoms remain poorly controlled after 1-2hrs, contact Palliative Care via switch for further advice.

Symptom First Choice Second Choice PAIN / DYSPNOEA

NOTE: If patient pain remains poorly controlled after 2 hrs. or requires more than 3 - 4 prn doses within 6 hrs.: • Contact Palliative Care for assistance with

prescribing a continuous sub-cutaneous infusion • Continue hourly pain monitoring • Continue prn therapy

Morphine

Dose: 2.5 mg – 5 mg subcutaneous inj Frequency: Every 30 minutes prn

Contra-indication: Renal failure

Fentanyl

Dose: 25 MICROg – 50 MICROg subcutaneous inj Frequency: Every 30 minutes prn

These doses are recommended for the opioid naïve patient – seek assistance as required for conversion of baseline medications. Call switch (9) for Palliative Care Consultant if required

AGITATION RESTLESSNESS

ANXIETY (including ‘air hunger’)

Midazolam

Dose: 2.5 mg - 5mg subcutaneous inj Frequency: 1 (one) hourly prn Max. dose/24hrs: 20 mg / 24 hours

Haloperidol

Dose: 0.5 mg – 1 mg subcutaneous inj Frequency: 3 hourly prn Max. dose/24hrs: 5 mg / 24 hours

Contra-indication: Parkinson’s, Dystonic reaction NAUSEA

& VOMITING

Haloperidol Dose: 0.5 mg – 1 mg subcutaneous inj Frequency: 3 hourly prn Max. dose/24hrs: 5 mg / 24 hours Contra-indication: Parkinson’s, Dystonic reaction

Ondansetron Dose: 4 mg Sublingual (or intravenous if required) Frequency: 8 hourly prn Max. dose/24hrs: 24 mg / 24 hours

Contra-indication: Constipation

Metoclopramide Dose: 10 mg subcut inj Frequency: 4 hourly prn Max. dose/24hrs: 40 mg / 24 hrs. Contra-indication: Dystonic reaction, bowel obstruction, Parkinson’s

SECRETIONS (RESPIRATORY TRACT)

Hyoscine Butylbromide (Buscopan)

Dose: 10 mg - 20 mg subcutaneous inj Frequency: 2 hourly prn Max. dose/24hrs: 120 mg / 24 hrs.

Glycopyrrolate

Dose: 200 MICROg - 400 MICROg subcutaneous inj Frequency: 2 hourly prn Max. dose/24hrs: 1200 MICROg / 24 hrs.


Appendix A - The DandELinE process ED staff commonly report that they are in the business of acute care management and are not skilled in recognising when dying might be the potential outcome for a patient they are caring for. Additionally, ED staff consider their ability to start difficult conversations with patients who might be bearing the end of life lacking. DandELinE aims to provide ED staff with the tools to consider when dying might be the potential outcome of care for their patient. Identifying patients who are imminently dying or at risk of dying in the short term Medical Officer: When assessing the patient, consider:

• Does this patient show signs of advancing disease – unstable, deteriorating, complex symptom burden? Do they have an existing condition/s with a risk of dying from a sudden acute crisis in their condition?

• Is this patient showing signs of frailty or had frequent admissions recently for the same symptoms with little or no improvement?

• Will providing active or life prolonging treatments lead to a meaningful outcome that is in line with the patient wishes and their acceptable quality of life?

• What will be the benefit to the patient in performing diagnostic tests / procedures? • Would it be a surprise if the patient died within the next few days / weeks / months? How does

the patient wish to spend these last days?

Action: Determine what the patient hopes to achieve during this presentation - establish their understanding of their health care, elicit goals of care, values and preferences. Confirm with the patient that any existing Advance Care Planning (ACP) documents remain current. If not, revoke where necessary and complete new documents. Seek consensus opinion with other clinicians and discuss with the Senior Medical Officer as required. Health providers are under no legal or ethical obligation to offer or provide futile medical treatment; that is, treatment that affords no benefit and would cause harm to the patient. Under the law, patients with capacity provide their own consent and may refuse life-sustaining treatment, even if this results in their death or would cause it to happen sooner.

Locating previous Advance Care Planning discussions / documents On presentation of any patient to the ED, assessment of their condition begins at triage and continues throughout their ED stay. The triage process must include determining if the patient has any existing ACP documents. These may be filed in the Health Record or available on The Viewer in the ACP tracker. A history of ACP conversations and activity may also be available in the ACP tracker. See Local procedures or refer to the SCHHS procedure for Advance care planning – recording discussions and documentation. https://qheps.health.qld.gov.au/__data/assets/pdf_file/0024/375450/000037.pdf

Confirm that the documents are the most recent / up-to-date and valid (signed and dated appropriately) and bring these documents to the attention of the treating medical officer.

Determine the appointed Enduring Power of Attorney (EPOA) for health matters or substitute decision maker (SDM) ACP documents come into effect if the patient no longer has the capacity to speak for themselves, engage in and consider all the available treatment / care options, and make decisions regarding their health care.



The Queensland guardianship legislation provides a consenting framework for adults with impaired capacity – the following priority cascade applies;

1. Advance Health Directive

2. Tribunal appointed Guardian

3. Valid EPOA (for health matters)

4. Statutory Health Attorney - (over 18yrs old, readily available, willing and culturally appropriate) in following order:

a) Spouse in close and continuing relationship

b) Primary unpaid carer

c) Close adult friend or relative (not paid carer)

d) The Public Guardian.

Discussing treatment options with the patient or EPOA / SDM Decisions and conversations with relatives and carers of patients about resuscitation status, advance care plans and patient wishes can be difficult and should be handled in a sensitive, compassionate and professional manner. The overall treatment plan should be discussed in the context of what can and can’t be done (within reasonable limits of what is achievable) for the patient in a sensitive, yet honest way. This conversation may include discussion, in broad terms, of available treatment options, palliative care and other support measures. Remember to involve the Social Worker, Aboriginal and Torres Strait Islander Hospital Liaison Officer and Spiritual/Pastoral care if required. If end-of-life care is not the appropriate and agreed decision, cease the DandELinE process and treat as required.

Documentation of outcomes and discussion Delicately handled conversation can relieve anxiety and avoid misunderstandings or unrealistic expectations further along the clinical path. Limitations must be clearly spelled out and be consistent with information you have communicated. It is imperative to make a clear decision and communicate it to all treating clinicians by providing details of these conversations via clear documentation in the health record. The guardianship law includes a legal requirement to document the decision-making pathway. See local procedures or refer to SCHHS procedure Advance care planning – recording discussions and documentation.

Implementation of the Care Plan for the Dying Person Nursing staff - When the decision has been made to provide end of life care, retrieve the required documentation pack and medication device pack from the DandELinE trolley. Record the UR number / attach a patient identification label to the Trolley Stock Use Record – complete this record as items are used. The Care Plan or the Dying Person is designed to be utilised by the MDT and is comprised of:


• Details of the MDT involved in commencing the care plan; • Initial assessment; • Family / carer information sheet – to be torn out and given to the family / carer during

discussions; • Ongoing assessment; • Clinical notes section; and • Care after death.

The care plan supports the delivery of high-quality care tailored to the individual’s needs and forms a comprehensive ‘checklist’ of the essential elements of end of life care. The family / carer information ‘tear-out’ sheet is used to support the information provided in previously held discussions with the patient / family during the decision-making process. The ongoing assessment section presents symptoms in a ‘track and trigger’ format with prompts for management options. Commencement of this care plan in the ED allows transition of care and facilitates clinical handover in instances where the patient is transferred to another ward / facility.

Medication prescribing guidelines for pain and symptom management Medical Officer - As a person reaching the end of life begins to deteriorate, their regular medications may not need to be administered. Cease any medications that are not required for comfort or symptom management, including IV fluids and in some instances, oxygen therapy. The important medications to remember charting (particularly before the patient leaves the ED are for pain, anxiety / agitation, increased secretions and nausea / vomiting.

1. Use the DandELinE PRN Medication Guideline - this provides details of the most frequently required medications to manage symptoms – the preferred route of administration being subcutaneous.

2. Consider replacing the patient’s current symptom management medications with a continuous subcutaneous infusion (CSCI). The Palliative Care Consult Liaison team offer 24-hour support and assistance if required. Contact Palliative Care via switch.

NOTE: Dose conversion will be required for patients who are currently receiving Opioids. Disposition planning / transfer and accommodation of dying patients Patient preferences are given priority when determining where best to care for the dying patient. Every effort must be made to quickly accommodate the patient in the most suitable area or preferred location for their end-of-life care. Religious or cultural preferences should be accommodated where possible.

The Care Plan for the Dying Person should be commenced on all end-of-life care patients in ED.


End-of-life care must be tailored to the individual needs of the patient and their family / carers. Consider these needs when determining what information, resources and mementos (e.g. quilt) are provided. Provide bereavement support for families / carers and staff as required. ➢ For patients who wish to die at home or usual place of residence: Research and local data collection indicate that most patients state their preference is to die at home. In most cases, palliative care support will be required for the family / carer. For patients who are already known to Palliative Care, contact the Palliative Care nurse (in hours) if the management plan has been altered. After hours, contact Dove Palliative Care Unit. For patients who are not known to Palliative Care contact the Palliative Care registrar for referral. Discharging these patients after hours should be avoided if possible. Medical Officer - Prescribe medications for symptom management and pain control. Notify the General Practitioner, provide a copy of the Acute Resuscitation Plan (ARP) and complete the “Not for CPR” letter. Nursing staff – For patients that arrive with a Niki pump insitu, ensure the Niki pump is returned with the patient. Provide the family / carer with the DandELinE information pack (available in the DandELinE trolley) including the family / carer section from the Care Plan for the Dying Person; the Surefuser+ ™ booklet (if required); a copy of The Dying Process. http://palliativecare.org.au/wp-content/uploads/2015/05/PCA002_The-Dying-Process_FA.pdf If not previously provided by the Social Worker, include a copy of the When Someone Dies booklet in the information pack. https://www.health.qld.gov.au/__data/assets/pdf_file/0032/647672/schhs-eolc-booklet.pdf It may be appropriate to offer the patient a quilt, handcrafted and donated by the Sunshine Linus Inc. Quilters if they have not previously received one from the Adem Crosby Centre. Social Worker and Aboriginal & Torres Strait Islander Hospital Liaison Officer – provide relevant resources as required for the individual patient. Pharmacist - for patients returning to a Residential Aged Care Facility (RACF) ensure the EDDMAR or IMAR and Subcutaneous Medication Infusion Device Chart are completed. https://qheps.health.qld.gov.au/__data/assets/pdf_file/0040/385798/sw176.pdf ➢ For patients who wish to die in hospital: Medical Officer - Refer for admission under the appropriate specialty. Prescribe medications for symptom management and pain control. Complete the Interim Management Plan (IMP) if appropriate and ensure that the patient has adequate medications prescribed for symptom management and pain control. If IMP is not appropriate, discuss with admitting registrar regarding a rapid review.

http://palliativecare.org.au/wp-content/uploads/2015/05/PCA002_The-Dying-Process_FA.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0032/647672/schhs-eolc-booklet.pdf

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0040/385798/sw176.pdf


Nursing staff – Contact the PACH team to arrange / confirm fast track admission to the relevant ward or facility. Commence any prescribed continuous subcutaneous medications and provide care as per the Care Plan or the Dying Person. NOTE: Patients who are to be transferred to another facility require:

✓ A Surefuser+ ™ for continuous sub-cutaneous medications ✓ A copy of the ARP and the “Not for CPR” letter.

NOTE: It may be necessary to utilise the Transit Unit (if appropriate) for patients who are waiting Inter-Hospital Transfer or transport home. The non-urgent non-ambulance (NUNA) vehicle may also be a suitable option for transferring patients to Dove or a local Residential Aged Care Facility (RACF). Patients requiring transport, are to be provided with a copy of the ARP and “Not for CPR” letter.

• For patients who are imminently dying: Medical Officer - complete the Short Stay Management Plan and prescribe medications for symptom management and pain control. Nursing staff – Transfer to room 15 in the Short Stay Unit as soon as possible. Continue as per the Care Plan for the Dying Person. See local procedures or refer to SCHHS procedure: Deceased patient care and management: adult and paediatric patients. https://qheps.health.qld.gov.au/__data/assets/pdf_file/0034/375838/000103.pdf

• Once the patient has died

Nursing staff –See local procedure or refer to SCHHS procedure: Deceased patient care and management: adult and paediatric patients.


https://qheps.health.qld.gov.au/caru/clinical-pathways/guidance-dying


https://qheps.health.qld.gov.au/__data/assets/pdf_file/0019/380503/000618-a1.pdf

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0019/380503/000618-a1.pdf


https://www.health.qld.gov.au/__data/assets/pdf_file/0029/433469/pway-guid-dyng.pdf




Appendix B – Example calculation to scope the extent of the issue Example data collection to scope the need SCUH - over a three-month period (Q2 2017) 99 patients died within 7 days of an ED presentation Average age of these patients - 75 years Further qualitative investigation of the charts of these patients identified that 13 of these patients died in ED. This data suggests about one patient a week dies in the ED (13 patients/13 weeks). DandELinE grew out of the belief that if it is not done well, then this is a huge impact on the patient, their family and the staff involved. Details of how to further scope the issue in your ED, repeated from above here.

1. a) Source ED data on all patients who have died within the ED, and all patients who have died within 72 hours of admission from ED. Record the average length of time spent in ED, and time to inpatient team or palliative care referral if made. Data may be obtained from the ED information system or the corporate inpatient database. b) Qualitative review of patient’s death – i.e. quality of death, including symptom/s and PRNs administered (if any), Medical Emergency Response Call / Code Blue (or equivalent) activation, presence of new or reviewed Acute Resuscitation Plan or Advance Care Plan, use of Clinical Guide for the Dying Patient, involvement of Palliative Care specialist/team, adherence to management of the deceased patient procedure c) Distribute the staff survey (Eager et al., 2004) found in Appendix C to measure baseline attitudes and skills of staff, identify gaps with a view to designing specific educational tools for capacity building of end-of-life care skills for ED staff. (Utilise ED staff meetings, common areas, email, communication platforms and education sessions to distribute staff surveys to increase response rate)

2. Collate existing process documents for care of patients at end-of-life within the ED, including processes relating to death certification and audit (if applicable), and care of the deceased body protocols.


Appendix C – Evaluation Tool (Eager et al. 2004) Source: Eagar K, Senior K, Fildes D, Quinsey K, Owen A, Yeatman H, Gordon R and Posner N (2003) The Palliative Care Evaluation Tool Kit: A compendium of tools to aid in the evaluation of palliative care projects. Centre for Health Service Development, University of Wollongong. Access Evaluation tool: https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/documents/doc/uow082020.pdf

https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/documents/doc/uow082020.pdf


Appendix D – RAIDL tool Access the Risk, Action, Issues, Decision, Lesson learnt (RAIDL) tool via www.health.qld.gov.au/careatendoflife.

http://www.health.qld.gov.au/careatendoflife


Appendix E – Equipment for DandELinE resource trolley


An example of the “gold standard” equipment for the DandELinE resource trolley

1. Quilt provided by volunteers to keep patient, faily warm (gift to family)

DandELinE Trolley

Drawer 1 - Documentation Subcutaneous Medication Infusion

Device Chart Symptom management PRN medication

guide Care Plan for the Dying Person ACP Documentation Door sign

Drawer 2 – Nursing care

Mouth care swabs / spray White paraffin Drawing up needles Syringes Sodium Chloride 10mL Grab bags:

o Surefuser insertion o Niki pump

Drawer 3 - Post Death Shrouds Body bag Tags Mortuary paperwork

Drawer 4 – Carer / family packs Relatives information/bag

o The Dying Process o When someone dies - booklet o Surefuser information - booklet

Palliative Care carer pack End-of-Life Care Handover Bag Quilt

Niki pump grab bag contents

2 X BD Saf-T-Intima 24GA (yellow)

2 X 3M Tegaderm IV Advanced dressing (or IV 3000)

Extension tube 150cm, 1.5mL

BD Plastipak 20mL luer lock syringe

Sub cut line label (Brown)

Sub cut medication additive label for syringe (Brown)

9V battery

Surefuser grab bag contents

Surefuser+ 50mLs (1 day - 2.1mLs/hour)

2 X BD Saf-T-Intima 24GA (yellow)

2 X 3M Tegaderm IV Advanced dressing (or IV 3000)

BD Plastipak 50mL luer lock syringe

Cotton bag

Sub cut line label (Brown)

Sub cut medication additive label for syringe (Brown)

Surefuser+ patient guide pamphlet


Appendix F – Coaching Tips for DandELinE care interventions

Advance Care Planning: Introducing a Conversation (TIP ID 031)

Subcutaneous Needle (Saf-T-IntimaTM) – Insertion of (TOOL ID 097)

Oral hygiene for semi-unconscious non-intubated patients (TOOL ID 073)

Subcutaneous Infusion Niki T34 (TOOL ID 065)

Peritoneal Rocket Drain - Drainage and Dressing (TOOL ID 145)

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0016/2150332/tip-advancecare-planning-031.pdf

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0016/2150332/tip-advancecare-planning-031.pdf

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0035/445877/tool-subcut-saftintima-097.pdf

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0035/445877/tool-subcut-saftintima-097.pdf

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0029/426629/tool-oralhyg-uncon-073.pdf

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0029/426629/tool-oralhyg-uncon-073.pdf

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0013/441400/tool-subcut-infusion-niki-000065.pdf

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0031/441796/tool-rocketdrain-dressing-145.pdf


Appendix G - Useful websites and learning modules for further information Advance Care Planning Australia This website provides information for health and health care workers, individuals, family, friends and carers of palliative patients and provides education and training as well as links to Advance Care Planning and Advance Health Directives for each state and territory in Australia. http://www.advancecareplanning.org.au/resources Queensland Health provide information and Advance Care Planning Clinical Guidelines for staff wishing to assist starting the conversation or updating Advance Care Plans with patients. https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/advance-care-planning https://www.health.qld.gov.au/__data/assets/pdf_file/0037/688618/acp-guidelines.pdf

• The six- step Advance Care Planning (ACP) process may also be useful. https://www.health.qld.gov.au/__data/assets/pdf_file/0031/688261/acp-process.pdf

• ACP quick guide https://www.health.qld.gov.au/__data/assets/pdf_file/0035/688265/acp-quick-guide.pdf

Beyond Blue Beyond Blue provides information on depression and anxiety in older people through the various programs it runs for this cohort. https://www.bspg.com.au/dam/bsg/product?client=BEYONDBLUE&prodid=BL/0063&type=file A checklist is also provided by Beyond Blue for anxiety: https://www.beyondblue.org.au/the-facts/anxiety-and-depression-checklist-k10 My Aged Care This website is a Commonwealth government initiative providing a wide range of information. This includes information on eligibility and assessment, resources for service providers and health professionals and for people wanting to access information for themselves or family members. This includes information on aged care services providing assistance at home, after hospital transition, respite care, RACFs. It also has information on advance care planning. https://www.myagedcare.gov.au/ National Cancer Institute The National Cancer Institute provides information about planning for advanced cancer, information for caregivers and frequently asked questions about advanced cancer https://www.cancer.gov/about-cancer. It also provides information about palliative care. http://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet.

http://www.advancecareplanning.org.au/resources

https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/advance-care-planning

https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/advance-care-planning

https://www.health.qld.gov.au/__data/assets/pdf_file/0037/688618/acp-guidelines.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0031/688261/acp-process.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0035/688265/acp-quick-guide.pdf

https://www.bspg.com.au/dam/bsg/product?client=BEYONDBLUE&prodid=BL/0063&type=file

https://www.myagedcare.gov.au/

https://www.cancer.gov/about-cancer

https://www.cancer.gov/about-cancer

http://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet

http://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet


Care Plan for the Dying Person The Care Plan for the Dying Person isl be a useful tool staff may have already used in practice. https://clinicalexcellence.qld.gov.au/sites/default/files/docs/clinical-pathways/care-plan-dying-person.pdf Other Useful Queensland Health tools

• Statewide strategy for end-of-life care 2015 https://www.health.qld.gov.au/__data/assets/pdf_file/0022/441616/end-of-life-strategy-full.pdf

• Guide to Informed Decision-making in Health Care 2nd Ed https://www.health.qld.gov.au/__data/assets/pdf_file/0019/143074/ic-guide.pdf

• Consent to provide health care to adult’s flowchart https://www.health.qld.gov.au/__data/assets/pdf_file/0036/688266/wwlsm-flowcharts.pdf

• Withholding and withdrawing life-sustaining measures - Legal considerations for adult patients https://www.health.qld.gov.au/__data/assets/pdf_file/0038/688268/measures-legal.pdf

• Withholding and withdrawing life-sustaining measures - Legal considerations for staff guideline https://www.health.qld.gov.au/__data/assets/pdf_file/0023/833315/cpdp-care-plan-hp-guidelines.pdf

• RAC End of Life Care Pathway https://metrosouth.health.qld.gov.au/sites/default/files/content/raceolcp_watermark.pdf

• ARP resources https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/resuscitation/consent#acute

• End of Life resources https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/resources

• End-of-life care: Guidelines for decision-making about withholding and withdrawing life-sustaining measures from adult patients (Jan 2018) https://www.health.qld.gov.au/__data/assets/pdf_file/0033/688263/acp-guidance.pdf

Primary legislation, policy, standards or other authority • Guardianship and Administration Act 2000 Public Guardian Act 2014

Clinical Excellence Queensland: End of life care: Guidelines for decision-making about withholding and withdrawing life-sustaining measures https://www.health.qld.gov.au/__data/assets/pdf_file/0033/688263/acp-guidance.pdf

• Queensland Powers of Attorney Act 1998 National quality standards (NSQHS) or EQuIP

• National consensus statement: essential elements for safe and high-quality end-of-life care https://www.safetyandquality.gov.au/wp-content/uploads/2015/05/National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-care.pdf

• Australian Commission on Safety and Quality in Health Care (ACSQHC)

• Comprehensive Care Standard 5: Comprehensive care at the end of life 5.15 – 5.20 https://www.safetyandquality.gov.au/wp-content/uploads/2017/12/National-Safety-and-Quality-Health-Service-Standards-second-edition.pdf

https://clinicalexcellence.qld.gov.au/sites/default/files/docs/clinical-pathways/care-plan-dying-person.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0022/441616/end-of-life-strategy-full.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0019/143074/ic-guide.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0036/688266/wwlsm-flowcharts.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0038/688268/measures-legal.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0023/833315/cpdp-care-plan-hp-guidelines.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0023/833315/cpdp-care-plan-hp-guidelines.pdf

https://metrosouth.health.qld.gov.au/sites/default/files/content/raceolcp_watermark.pdf

https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/resuscitation/consent#acute

https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/resuscitation/consent#acute

https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/resources

https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/resources

https://www.health.qld.gov.au/__data/assets/pdf_file/0033/688263/acp-guidance.pdf

https://www.legislation.qld.gov.au/view/pdf/2016-03-22/act-2000-008

https://www.health.qld.gov.au/__data/assets/pdf_file/0033/688263/acp-guidance.pdf

https://www.legislation.qld.gov.au/view/pdf/2017-03-05/act-1998-022

https://www.safetyandquality.gov.au/wp-content/uploads/2015/05/National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-care.pdf

https://www.safetyandquality.gov.au/wp-content/uploads/2015/05/National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-care.pdf

https://www.safetyandquality.gov.au/wp-content/uploads/2017/12/National-Safety-and-Quality-Health-Service-Standards-second-edition.pdf

https://www.safetyandquality.gov.au/wp-content/uploads/2017/12/National-Safety-and-Quality-Health-Service-Standards-second-edition.pdf


• Statewide strategy for end-of-life care May 2015 https://www.health.qld.gov.au/__data/assets/pdf_file/0022/441616/end-of-life-strategy-full.pdf

• Clinical Excellence Queensland: Advance Care Planning Clinical Guidelines January 2018 https://www.health.qld.gov.au/__data/assets/pdf_file/0037/688618/acp-guidelines.pdf

Forms and other supporting documents

• Advance health directive website and forms: https://www.qld.gov.au/law/legal-mediation-and-justice-of-the-peace/power-of-attorney-and-making-decisions-for-others/advance-health-directive/

• Acute resuscitation plan form https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/resuscitation/overview

• Statement of choices (SoC) form A: For persons with decision-making capacity

• Statement of choices (SoC) form B: For persons without decision-making capacity

• Enduring power of attorney: https://www.qld.gov.au/law/legal-mediation-and-justice-of-the-peace/power-of-attorney-and-making-decisions-for-others/power-of-attorney/

• SCHHS Advance Care Planning: Introducing a Conversation Tool ID 000031 https://qheps.health.qld.gov.au/__data/assets/pdf_file/0013/2111152/tool-000031-advance-care-plan.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0022/441616/end-of-life-strategy-full.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0037/688618/acp-guidelines.pdf

https://www.qld.gov.au/law/legal-mediation-and-justice-of-the-peace/power-of-attorney-and-making-decisions-for-others/advance-health-directive/

https://www.qld.gov.au/law/legal-mediation-and-justice-of-the-peace/power-of-attorney-and-making-decisions-for-others/advance-health-directive/

https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/resuscitation/overview

https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/resuscitation/overview

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0028/386812/1599i.pdf

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0033/387960/1601i.pdf

https://www.qld.gov.au/law/legal-mediation-and-justice-of-the-peace/power-of-attorney-and-making-decisions-for-others/power-of-attorney/

https://www.qld.gov.au/law/legal-mediation-and-justice-of-the-peace/power-of-attorney-and-making-decisions-for-others/power-of-attorney/

https://qheps.health.qld.gov.au/__data/assets/pdf_file/0013/2111152/tool-000031-advance-care-plan.pdf




Appendix H – ‘When Someone Dies’ Printable resource Created by the Social Work team at SCHHS, can be assess at: https://www.health.qld.gov.au/__data/assets/pdf_file/0032/647672/schhs-eolc-booklet.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0032/647672/schhs-eolc-booklet.pdf


Appendix I - Example health service communications Decision-making and End-of Life-care in Emergency:

DandELinE With an increasing focus on the delivery of the right care at the right time in the right place, <SCHHS> staff from the <SCUH> Emergency Department and Specialist Palliative Care Service have joined forces to improve care for patients who arrive in the Emergency Department requiring a palliative approach to care. It is recognised that patients will often arrive in the Emergency Department at a time when they have reached the limit of available treatment options for health restoration and maintenance. Urgent care is still required for these patients – but of a different type than that usually depicted in mainstream TV or movies.

The care they require is an escalation to the palliative approach and focuses on respecting the patient’s wishes, and their need for pain relief, symptom management, comfort, dignity and family support. The DandELinE project supports the Multi-Disciplinary Emergency team to fulfil the provision of good end of life care for the identified patient. This is an exciting time for our staff as DandELinE aims to provide the ED staff with the tools, decision support and resources they require to provide this important aspect of care for the patients presenting in the <SCUH> emergency department. It is envisaged that the process will be modified to suit the EDs in <Gympie and Nambour> hospitals in the near future.


Decision-making and End-of Life-care in Emergency: DandELinE

With an increasing focus on the delivery of the right care at the right time in the right place, <SCHHS> staff from the <SCUH> Emergency Department and Specialist Palliative Care Service have joined forces to improve care for patients who arrive in the Emergency Department requiring a palliative approach to care. It is recognised that patients will often arrive in the Emergency Department at a time when they have reached the limit of available treatment options for health restoration and maintenance. Urgent care is still required for these patients – but of a different type than that usually depicted in mainstream TV or movies. DandELinE focusses on shared decision-making between the

patient and family and the treating team so that the care provided is in the patient’s best interest, aligns with their wishes and values and constitutes good medical practice. If it is decided that the care required is an escalation to the palliative approach, the focus becomes pain relief, symptom management, comfort, dignity and family support. A palliative approach to care or end-of-life care DOES NOT equal ‘no care’ or that staff have given up on the patient. The DandELinE project supports the Multi-Disciplinary Emergency team with the tools, decision support and resources to fulfil the provision of good end-of -life care and the disposition to the appropriate place to provide that care, be it at home, in hospital or in the ED, for the identified patient. How you can help! Unfortunately, futile treatment sometimes persists in the ED due to decision-making conflicts that arise when the therapeutic limitations are not always clearly documented or discussed with the patient or his/her family at an earlier stage in their illness, as their health declines or age advances. Treating Medical Officers and primary care providers can assist with the decision-making conflict often encountered by ED staff by ensuring they have fully discussed and documented all the available treatment options, limitations and outcomes with the patient – including the treatment of option of palliative care. Advance care planning and determining goals of care with the patient and their family can greatly reduce the trauma and grief of making these decisions in a crisis situation - for all involved!


References and further reading BD. (2017). BD Saf-T-Intima™ closed IV catheter system. Retrieved 12th December 2017 from: http://www.bd.com/en-us/offerings/capabilities/infusion/iv-catheters/bd-saf-t-intima-closed-iv-catheter-system

Cooper, E., Hutchinson, A., Sheikh, Z., Taylor, P., Townend, W., & Johnson, M. J. (2018). Palliative care in the emergency department: A systematic literature qualitative review and thematic synthesis. Palliative Medicine, 32(9), 1443-1454.doi:10, 1177/0269216318783920.

CPCRE (2010). Guidelines for Subcutaneous Infusion Device Management in Palliative Care. Second Edition. Brisbane. Retrieved 12th December 2017 from: https://www.health.qld.gov.au/__data/assets/pdf_file/0029/155495/guidelines.pdf

Eagar, K., Senior, K., Fildes, D., Quinsey, K., Owen, A., Yeatman, H., Gordon, R., Posner, N. (2004) The Palliative Care Evaluation Tool Kit: A compendium of tools to aid in the evaluation of palliative care projects. Centre for Heath Service Development, University of Wollongong. Retrieved from https://ro.uow.edu.au/chsd/5/

Eilers, J. (2004). Nursing interventions and supportive care for the prevention and treatment of oral mucositis associated with cancer treatment, Oncology nursing forum, 31, 13--23.

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Gloss, J. (2017).End of life care in emergency departments: a review of the literature. Emergency nurse.25, 2, 29-38.

Green, E., Gott, M., Wong, J. (2016). Why do adults with palliative care needs present to the emergency department? A narrative review of the literature. Progress in Palliative Care, 24 (4), 195-203.

McCallum, K. J., Jackson, D., Walthall, H. & Aveyard, H. (2018) Exploring the quality of the dying and death experience in the Emergency Department: An integrative literature review, International Journal of Nursing Studies, 85, 106-117. Doi: doi.org/10.1016/j.ijnurstu.2018.05.011

Proctor, E., Silmere, H., Raghavan, R., Hovmand, P., Aarons, G., Bunger, A., . . . Hensley, M. (2011). Outcomes for Implementation Research: Conceptual Distinctions, Measurement Challenges, and Research Agenda. Adm Policy Ment Health, 38(2), 65-76. doi:10.1007/s10488-010-0319-7

Rebeiro, G., Jack, L., Scully N. and Wilson D. (2013). Fundamentals of Nursing Clinical Skills Workbook. Second Edition. Chatswood, N.S.W.: Mosby Elsevier.

Rocket Medical, Rocket IPC Peritoneal Catheter (Information for nurses and patients). Retrieved 25th July 2017 from http://sales.rocketmedical.com/media/attachment/file/r/o/rocket_ipc_peritoneal_catheter_-_information_for_patients_and_nurses.pdf

Shearer, F, M., Rogers, I, R., Monterosso, L., Ross-Adjie, G.,Rogers, J, R.(2014).Understanding emergency department staff needs and perceptions in the provision of palliative care. Emergency Medicine Australasia, 26,249-255.

The University of Edinburgh (2019) Supportive and Palliative Care Indicators Tool (SPICTTM) Accessed

http://www.bd.com/en-us/offerings/capabilities/infusion/iv-catheters/bd-saf-t-intima-closed-iv-catheter-system

http://www.bd.com/en-us/offerings/capabilities/infusion/iv-catheters/bd-saf-t-intima-closed-iv-catheter-system

https://www.health.qld.gov.au/__data/assets/pdf_file/0029/155495/guidelines.pdf

https://doi.org/10.1136/bmj.j4891

https://doi.org/10.1016/j.ijnurstu.2018.05.011

http://sales.rocketmedical.com/media/attachment/file/r/o/rocket_ipc_peritoneal_catheter_-_information_for_patients_and_nurses.pdf

http://sales.rocketmedical.com/media/attachment/file/r/o/rocket_ipc_peritoneal_catheter_-_information_for_patients_and_nurses.pdf


19 Aug, 2019 https://www.spict.org.uk

The University of Queensland/ Blue Care Research and Practice Development Centre (2012). The Palliative Approach Toolkit, Module 3: Clinical care. Retrieved on 3rd October 2017 from https://www.caresearch.com.au/Caresearch/Portals/0/PA-Tookit/Module_3_web.pdf

Weil, J.,Weiland, T, J., Lane, H.,Jelinek, G, E.,Boughey, M.,Marck, C, H.,Philip, J .(2015). What’s in a name ?A qualitative exploration of what is understood by palliative care in the emergency department. Palliative Medicine, 29(4), 293-301.

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