getting short of breath without exertion



The Patient:

Tyler Morton is a 40-year-old man who spent his childhood and teenage years in Brisbane. Tyler, whilst growing up excelled in all sports and represented QLD in the state Cricket Team. Upon completing high school, Tyler graduated from the University of Queensland with a Bachelor of Business Management before joining the Royal Australian Airforce as a Pilot in 2004. Whilst training to become a Pilot, Tyler met is future wife Catherine in Newcastle and this is where the couple settled to commence their family. Tyler and Catherine have 3 Children. Catherine is a stay at home Mum to:

Andrea (8 Years)
Jessica (5 years)
Erin (2 Years)

Being from Newcastle, Catherine’s Family is very close to Tyler and Catherine and spend a lot of time together. Tyler’s Family is in Brisbane and has only minimal contact with Tyler and his young Family. Unfortunately, Catherine and Tyler’s mother Joyce do not get along and this causes a lot of conflict in the marriage.

18 months ago

Tyler experienced some weakness in his left hand. His grip strength was not a strong as his right hand and he found he would be dropping anything that he picked up. Tyler also noted he was getting short of breath without exertion. Considering his general fitness is quite good, this was highly abnormal. Tyler made an appointment with the GP on the Airforce base to discuss this concern.

After multiple MRI’s and blood tests and lumbar punctures (over a 3-month period), Tyler was diagnosed with Amyotrophic lateral sclerosis (ALS). At the time of diagnosis, Tyler’s weakness in his left hand had progressed to his right hand and he had developed a foot drop in his left ankle.

Upon diagnosis, Catherine was adamant that the children were not going to be told the reason that Dad is no longer working. Tyler’s diagnosis also caused more stress and tension with the relationship between Catherine and Joyce. Joyce wanted to visit and be there with her son, however Catherine was not supportive of Joyce and Tyler’s brothers visiting.

12 months ago

Around 6 months after initial symptoms and 3 months after diagnosis, Tyler’s condition had deteriorated. Tyler now required a walking frame to mobilise. His dyspnoea has increased, he was suffering from headaches and was generally fatigued. Tyler was being assessed by a respiratory specialist for the requirement of Non-invasive ventilation (NIV) especially at night. Tyler now suffers from dysphagia and was being assessed in consultation with the respiratory specialist and dietician for the need for a gastrostomy.

6 months ago

Tyler’s condition has continued to deteriorate. Due to insufficient nutritional intake secondary to dysphagia, Tyler had a gastrostomy inserted. Since insertion, he has had numerous infections at the insertion site. Tyler also requires assistance of NIV mainly at night, however the demand has increased significantly over the last couple of weeks. Tyler’s mobility is limited. He walks intermittently with the use of an aid and one person. His mobility is limited due to progressive foot drop and increased dyspnoea. With his condition worsening, Tyler initiated the difficult conversation with Catherine about his mortality. Catherine is still not accepting of Tyler’s condition nor is she wanting the Children to know the extent of Tyler’s condition. Tyler completed an Advanced Health Care Directive and he ensured both Catherine and his mother Joyce had a copy. Tyler is currently visited weekly by the Community Palliative Care Team and he has daily support from Community nurse to assist with his activities of daily living.

Despite Tyler’s progressive physical deterioration and the ongoing tensions with Catherine’s inability to accept his condition, Tyler values the time he gets to spend with his 3 girls. Watching them play together and their interactions are invaluable to Tyler. Tyler has insisted that his mother and brothers are able to visit monthly. When his family visit, Catherine generally takes the girls and leaves Tyler at home. Although this an ideal situation, Tyler has come to accept the conflict between Catherine and Joyce. Tyler is also still in contact with his colleagues from the Airforce who visit him frequently.


Past Medical Hx

# R) Wrist as a child

Current History

Weakness in left and right hands
Increase in dysponea on exertion and at rest
Restlessness/ sleeplessness nocte
Low mood
Foot drop left foot
Increase demand for NIV
02 Therapy
Peg Feeds
Intermittent infections Peg site

Gathering new Information 

Thursday 19th March

Tyler’s vital signs when visited by the Palliative Care Nurse:

0900 hrs

RR: 24

HR: 60

BP: 120/70

SaO2: 92% on 2Lmin NP

GCS: 14/15

Temp: 38.2 degrees

1300 hrs

RR: 24

HR: 70

BP: 120/70

SaO2: 92% on 2Lmin NP

GCS: 14/15

Temp: 38.6 degrees

1900 hrs

RR: 26

HR: 88

BP: 120/70

SaO2: 92% on 2Lmin NP

GCS: 14/15

Temp: 39.2 degrees

Patient Notes from Community Nurses over 24-hour Period:

“Patient’s mobility has decreased. He is now spending more time in bed secondary to weakness in arms and legs. Increased requirement of care from 1 person to 2 people to transfer patient. Patient appears more SOB. O2 therapy and NIV continues. Peg feeds continuing as per regimen. Patient’s mood appears low. Friends in attendance during visit. Patient communicating in short bursts.”

“Patient RIB during visit. Patient’s position altered. Patient sleeping for most of nursing visit. Patient appears more fatigued. Extra analgesia administered as per patients request. Peg feeds continue as per regimen. Wife and youngest child in attendance during visit. Patient appears warm to touch. Fan applied to assist with climate control.”

“Patient appears very drowsy throughout visit. Patient appears flushed in the face and remains warm to touch. Peg feed disconnected as per regimen. Peg site appears red and inflamed. Swab taken from Peg site for pathology. Patient appears in discomfort. Paracetamol 1gram given via peg. Oramorph 5mg given via PEG. NIV connected. Patient repositioned in bed. Patient’s wife was attending to children during nursing visit. Wife reports spending more time sleeping throughout the day. Voice message left for doctor review mane.”

Regular Medications

5mg Nocte

MS Contin Suspension Controlled Release
20mg BD

1 Sachet BD

25mg Nocte

Multivitamin Suspension
20mls OD

1g QID


PRN Medications

5mg 4/24
Pain/ Discomfort

0.1mg Nocte

Microlax Enema
1 tube



Review of Medical Officer from Palliative Care Community Service

Friday 20th March

The medical officer (MO) reviewed Tyler after concerns raised by Registered Nurse. Tyler had developed another peg site infection. It was discussed with Tyler the need for IV antibiotics. The MO suggested admission to hospital for treatment, however Tyler was not keen on this suggestion. After discussing hospital admission with both Tyler and Catherine together, it was decided that this was not an option. The Community Palliative Care Team would provide further care to Tyler with provision of IVAB’s in the home. It was arranged for Tyler to have a day visit to the local hospital for insertion of a PICC line due to expected long duration of antibiotics.

Post review of Medical Officer from Palliative Care Community Services:

Regular Medications

5mg Nocte

MS Contin Suspension Controlled Release
20mg BD

1 Sachet BD

25mg Nocte

Multivitamin Suspension
20mls OD

Pain/ Febrile

2g BD IV

2g BD IV


PRN Medications

5mg 4/24
Pain/ Discomfort

0.1mg Nocte

Microlax Enema
1 tube

Notes made by MO following review of Tyler:

Overall decline in patient’s condition on observation. Physically dependent for all activities of daily living.”

“Patient appears to be orientated to person, place and time. Some confusion at times, most likely due to infection present.”

“Patient’s wife appears to be supportive of patient and his decisions. It is my observations that the patient’s wife is expecting a full recovery from current infection. It is uncertain of her understanding of the patients condition.”

Palliative Care Phase – Unstable



Considerations for the Community Palliative Care Setting

Many of these are continuously being assessed and monitored:

Falls Risk Assessment
Braden Pressure Risk Assessment
Pain Assessment
NOK contact details
Advanced Health Care Directive
Modified Karnofsky Score of 30-40
SAS Tool Completed

What might be some things I need to consider as an RN caring for Tyler and his family ?

National Palliative Care Standards ?
NSQHS Standards?
NMBA Standards?
What do I know about the illness trajectory of motor neurone disease?
How will I recall information previously learnt and understood about this illness?
Where are some of the best locations to access EBP and current standards of care?
What is my role in supporting the patient and their family?
What is a SAS Tool?
What is the Problems Severity Score/ (PSS)
What is a Modified karnofsky Score?
What is a RUG-ADL Score?
How do I determine the Palliative Care Phase that the patient is in?
Do I need to start having some difficult conversations and ask the patient and their supports what they understand about his prognosis?
What are some of the complications that the patient and family may face?
Are there any specific symptoms that I should be looking for when developing a care plan?
What is the pathophysiological response when someone dies from the specific illness of this patient?
What should I expect?
Am I ready to deal with this?
Where do I get support as an RN if I feel overwhelmed?
Have I thought enough about my own well being and resilience for this professional specialty?
How do I care for a deceased person?
How will I know what to say?



Wednesday 24th March (Afternoon)

Tyler’s peg site appears to be less inflamed and redness has subsided a little. Tyler remains warm to touch. RN administered PRN oramorph to assist with Tyler distress and discomfort. Tyler has developed a wheeze. Repositioned to the semi- recumbent position to assist with breathing. Tyler appeared slightly confused, although was orientated place, person, and time. Tyler’s mood appears low. He puts a brave face on when his daughters are around, however Catherine is noticing a significant difference in his demeanour.

Thursday 25th March (Morning)

Tyler is visited by the Palliative Care Registered Nurse. Catherine is out dropping the children at school. Tyler appears to be extremely short of breath and struggling to breathe. O2 2L via NP was insitu. The RN applied NIV to assist Tyler with his breathing.

Thursday 25th March (Afternoon)

When attending to Tyler’s personal cares, Tyler made some requests to the RN. He asked for the CPAP machine to be removed, more analgesia for his increased pain and discomfort, he requested for arrangements to be made for a bed in the hospice and requested for his mother and brothers to be contacted. The RN spoke with Catherine regarding contacting Tyler’s extended family. Time was spent with Catherine talking about Tyler’s condition at present. Tyler was orientated to person, place and time.

Catherine did not want to share this time with Joyce and Tyler’s brothers and therefore she did not contact them.


Friday 26th March (Morning) – Sunday 28th March (Morning)

Tyler was visited 3 times per day by the palliative care team. At different times nurses and social workers visited.

Symptom management included:

Break through intermittent pain relief
Pressure area care
Dyspnoea relief – intermittent use of CPAP combined with 02 therapy
Mouth cares
Peg feeds continued
Support and counselling given to Catherine

Sunday 28th March (Afternoon)

When the palliative care nurse visited Tyler, she found him to be restless and agitated. Tyler stated he was in pain, and he just wanted it all to be over. Tyler asked again after his mother and brothers and the chance of being transferred to the hospice. After a thorough assessment, talking to Tyler and Catherine extensively, the nurse implemented the following:

Subcutaneous butterfly (waiting for the order for continuous analgesia infusion)
Called the hospice and arranged a bed for the following morning
Peg feeds discontinued
Called Joyce to inform her of Tyler’s condition

A syringe driver containing morphine, haloperidol and ondansetron was commenced after an order was received from the MO.

A hospice bed was arranged for transfer Monday afternoon.

Joyce and Tyler’s brothers were making flight arrangements to be there asap.

Modified Karnofsky Score – 30

RUG-ADL – 17

Tyler is now in the Terminal Palliative Care Phase

Monday 29th March (Morning)

Upon arrival of the palliative care nurse, Tyler appeared still and comfortable. His breathing was short, shallow and laboured with a respiration rate of 5. Catherine was sitting by Tyler’s bedside. Tyler’s girls were visiting neighbours. Joyce and Tyler’s brothers were due to arrive at 1pm.

At 1025 hrs, Tyler’s respiration rate decreased further. Upon inspection, Tyler’s peripheral extremities were cyanosed. Tyler’s pupils were fixed and dilated, and he took is last breath with Catherine by his side in the family home.





Clinical Practice Guidelines (CPG)


CPG’s and Case Study 

Please choose ONE of the following CPG’s to review the case study and discuss in your assessment task,  :

Care of the dying patient (attached to file)


Now that you have read the case study and selected ONE of the CPG’s provided you are required to:

Review and critique the care given to the patient against the CPG you have selected and provide evidence to support your critique through additional research that you will undertake
Highlight the importance of the National Palliative Care Standards and at least one of the NSQHSS and/or the NMBA Standards and how they influence our practice
Demonstrate knowledge on the illness trajectory of Motor Neurone Disease (MND) in line with Palliative Care Principles
Provide links between the case study and your chosen CPG to identify highlights or limitations in care
Ensure that your sources are all contemporary (within the last five years) and from evidence based sources)
Read all instructions and the rubric very carefully





Students are to provide an 1800 word critique of the provided case study using only ONE CPG.  (caring for dying patient)

To complete this task you will need to discuss and critique relevant elements of the CPG and case study whilst upholding the National Palliative Care Standards at least one of:

NMBA standards and/or


Do we need to use all of these standards to do well?

As the rubric states if you provide “Outstanding knowledge of themes and principles associated with palliative care” this will demonstrate an outstanding application of your knowledge to practice therefore using standards from more than one of the above and relating them together to uphold your critique of the patient care and support the clinical practice guideline selected will demonstrate excellent knowledge and understanding.  Using one standard from one of the above will not provide strong application of knowledge. However, a comparison of multiple standards that as registered nurses we are required to uphold will absolutely demonstrate very strong knowledge and understanding, if you link them together well with evidence based practice (EBP)

Where do I find all of these standards?

You should be aware of all of the standards above as they have been discussed in many units throughout your degree, so now it is time to demonstrate your knowledge and bring them together.  to assist you We have provided links below to each of the standards we would like you to utilise in your critique.


Eight National safety and Quality Health Service Standards to provide a nationally consistent level of care that can be expected by all consumers from all health organisations


Seven Standards that all Registered nurses must uphold to ensure that they maintain their registration and provide person centred and evidenced based preventative, curative, supportive, formative and palliative elements to their practice

National Palliative Care Standards

Nine National palliative Care standards that you know well as they have formed the framework of NRSG374 and were fundamental for assessment task 1

How do I relate these standards to the case study?

This is where your critical thinking and application of theory to practice is required, we cannot tell you how to do this, as a final year nursing unit it is essential that you are aware of how all of these standards, uphold and maintain, patient centred care, dignity, patient assessment and safety to name a few.  Spend some time reviewing these and map out the ones that you believe are important for your critique.

What is the format?

This is a critique and should be constructed in an essay format: Introduction, Body and Conclusion

What referencing standards do we use?

APA7th inclusive of intext citations, reference list and formatting.

Will I need to refer to the case study a lot in the critique?

It is important to write a critique and not “describe or explain” the case study. Referring to is important, however we do not want a description, we are looking for a critical analysis of the care provided, including positives and negatives

Do we provide a critique of the CPG?

You are not critiquing the CPG; you are using the CPG to critique the care provided in the case study. You may find some of the aspects of the case study are lacking, if you discuss this, please support with peer reviewed literature that is evidence based, and not just opinion.

Do we need to critique negative and positives episodes of care?

A solid critique discusses positive and negative aspects of care, as an RN you need to possess this skill and support it with EBP, providing any improvements to the care must be supported with literature. The rubric supports a critique of negative aspects at a minimum.

Do we need to use all the NPCS, NMBA and NSQHSS throughout the essay?

Please review the rubric to assist and guide you, read it carefully In order to achieve a HD you need to refer to the NPCS and at least one of the NSQHSS and NMBA using a palliative approach, demonstrating excellent knowledge of how these align with your critique of the episodes of care that you are highlighting in your essay.

What is meant by the term “episode of care”?

An episode of care is any time that care was provided. This could be an assessment nursing intervention, a referral to another service, or even an omission of care.

Do we need to be specific when referring to the standards?

Yes, being specific will demonstrate a strong understanding of application of the standards, for example, refer to NMBA standard 4.3 and not just standard 4, this will demonstrate greater knowledge and understanding, along with a solid application of the standards to clinical practice

How many references do I need in my reference list?

Minimum 15 – 18 appropriate references to achieve a HD in this criterion. APA 7th standard.

How many episodes of care do we need to critique?

In order to provide an in-depth critique of the care provided include 4-6 episodes of care, once again refer to the rubric for more understanding on what the expectation is.

Can the ACD be used to support arguments despite Tyler being cognitively intact?

Yes. Although Tyler was cognitively intact until the time of death and the ACD was not evoked, he was communicating his wishes in interactions with health professionals. He was essentially communicating the wishes in the ACD, that he had carefully documented previously.


Do not give an extensive description of the case study in your critique, this is not a descriptive essay. Descriptive work describes a situation or episode of care focusing on the how, what, when and where
Critical Work or in other words a critique provides a detailed analysis and assessment of a situation or episode(s) of care focusing on the why, supported with evidenced based practice (EBP) it is not a description of events with personal opinions
All markers know the case study, therefore there is no need to re-write is in your own words, this is a poor use of the word count
Be clear, direct and to the point when identifying episodes of care
Support all of your work with evidence either from literature, NPCS, NMBA and/or NSQHSS
Refrain from using your personal opinion, this is not a critique, please use EBP to support the critique you are presenting
Writing Conventions and Mechanics – Please use Australian/British English and NOT America English when spelling and writing, it is best to set your spell check to Australian or British and not American English for all academic writing, these will be considered spelling errors




Upon diagnosis, family meeting not conducted including all stakeholders
Documentation was not always completed, was not detailed, in the critique we needed to assume that the care had not been provided
Not enough discussion about Tyler’s Will and legally binding issues – was there a Will?
Advanced Care Directive should it have been enacted?
Limited social support
Pain assessment completed however not formally with appropriate tools reference PCOC

Process of dying was not mentioned, it was not discussed as per the CPG

Wife was in denial and struggling, little to no interventions to support her
Grief support and bereavement was not mentioned in the case study
Not having children involved leads to complex grief well supported in the research
ACD stated that Tyler wanted his entire family with him
Did not want to die in the family home wanted to be in a hospice – this was not actioned, IS this the responsibility of the RN and health care team to support and guide the family with this process? Support with standards and EBP
Wed March 24th – Wheeze observed however inappropriate actions were taken and little documentation about assessment and care planning
Deterioration should have been assessed and realised earlier could have assist Tyler to achieve his ACD needs and wants
MO stated that he was in an unstable stage and this is listed in the nursing notes however nothing done, they Knew his wishes, follow-up was poor
Nursing staff did not advocate for Tyler’s wishes
Referrals in to support family, perhaps these were too late


Palliative Care Themes egs.

Lack of communication • Poor assessments and documentation • Pain management • Time management • Social care • Counselling provided was it appropriate; consider grief and bereavement counselling??? • Symptom management – assessments • Autonomy?
Were interventions appropriate? Dysphagia for a long time was it addressed early enough was there something else that could have been instigated to improve Tyler’s quality of life?




MARKING CRITERIA: Please refer to HD one.