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Question:
The Patient:
Tyler Morton is a 40-year-old man who spent is 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 co ...

泰勒-莫顿是一个40岁的男人,他的童年和青少年时期是在布里斯班度过的。在成长过程中,泰勒擅长各种体育运动,并代表昆士兰州参加了州板球队。高中毕业后,泰勒从昆士兰大学毕业,获得商业管理学士学位,然后于2004年加入澳大利亚皇家空军成为一名飞行员。在成为飞行员的训练中,泰勒在纽卡斯尔遇到了他未来的妻子凯瑟琳,这就是我们的合作。

Question:

The Patient:

Tyler Morton is a 40-year-old man who spent is 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.

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 Dose Indication
Diazepam 5mg Nocte Anxiety
MS Contin Suspension Controlled Release 20mg BD Pain
Movicol 1 Sachet BD Constipation
Amitriptyline 25mg Nocte Sialorrhea
Multivitamin Suspension 20mls OD
Paracetamol 1g QID Pain
PRN Medications
Oramorph 5mg 4/24 Pain/ Discomfort
Clonidine 0.1mg Nocte Sialorrhea
Microlax Enema 1 tube Constipation

Processing Information

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:

Diazepam 5mg Nocte Anxiety
MS Contin Suspension Controlled Release 20mg BD Pain
Movicol 1 Sachet BD Constipation
Amitriptyline 25mg Nocte Sialorrhea
Multivitamin Suspension 20mls OD
Paracetamol 1g QID IV Pain/ Febrile
Cephalothin 2g BD IV Infection
Metronidazole 2g BD IV Infection
PRN Medications
Oramorph 5mg 4/24 Pain/ Discomfort
Clonidine 0.1mg Nocte Sialorrhea
Microlax Enema 1 tube Constipation

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

Identifying problems/issues

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
  • RUG- ADL 17
  • 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?

Establishing Goals and Taking Action

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.

Evaluating and Identifying new problems

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.

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

Quality of Life Considerations

Consider some of the following as you select one of the clinical practice guidelines supplied in the assessments folder to assist you with working through the diagnosis, and journey to the palliative care setting:

  • Rapid diagnosis and disease progression leaves little time to consolidate and prepare for death - spiritual, social and cultural needs must be considered
  • Was an adequate pain scale used?
  • How can the family be provided with support and continuing bereavement follow-up ?
  • Consider the adequate and detailed use of the SAS tool.
  • What can nursing staff provide families and the deceased patient to aid them in their grief, loss and need to say goodbye?
  • Are the National palliative Care standards considered in the CPG?
  • Were the NMBA and NQHS standards considered in the CPG?
  • Can the CPG be improved in any way to assist its affiliation with care planning, assessment tools and care provided in the palliative setting?
  • What is your responsibility as an RN to understand the disease trajectory of your patient's, plan their care and the care of their loved one's through the knowledge of nursing standards?
  • Was the Advanced Health Care Plan followed in the care that was provided?

Consider these points and the many others that you may have also thought of as you reflected on the case study.

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