Case Study - John

John had an advance care planning conversation with his GP not long after his dementia diagnosis, in order to share his future health care preferences. John appointed Emily as his substitute decision-maker and made an Advance Care Directive. It states that he that he does not want to be resuscitated if his heart stops beating and his preference is not to die in hospital. Also included in John’s Advance Care Directive is to have all necessary pain management to ensure his comfort. He requested a preference for regular visits from the chaplain and to have his favourite music playing when he dies.

John is presenting with physical decline and changes in cognitive function. He is less mobile and prefers to stay in his room. He is also sleeping more during the day, talking less and not eating all his meals. John has been observed to be holding his forehead, wringing his hands and frowning. He is experiencing more confusion about where he is, what day it is, and has refused care several times. In the last few days, John has called out for help and not remembered to use his call bell.

The registered nurse (Sue) undertakes a full physical assessment and records John’s vital signs, weight and urinalysis. Given John’s physical and behavioural changes, Sue uses the ‘Surprise Question’ to screen John in relation to requiring palliative care and as a trigger for deeper conversations and assessments alongside care planning.

The Surprise Question asks, "Would you be surprised if John died within the next 12 months?" Given his rapid decline and increasing care needs, the Sue and the team agree that they would not be surprised.

Having used the Surprise Question as a trigger, Sue undertakes further assessments. Using the Functional Assessment Staging Tool (FAST) (162kb pdf) John is assessed to determine the stage of his dementia. The FAST evaluates the progression of dementia by using seven main stages, that describe the functional decline of the older person with dementia. Each main stage includes sub-stages. On admission, John was stage 6d, indicating moderately severe dementia with urinary incontinence.

Sue has now assessed he is at stage 6e. This stage is moderately severe dementia with faecal incontinence and compounding reduction in mobility requiring substantial assistance with daily activities.

Sue also uses the Supportive and Palliative Care Indicators Tool (SPICT^TM) (184kb pdf) to assess John. The SPICT^TM helps identify people with deteriorating health who may benefit from palliative care. Key indicators for John identify that prior to admission to residential aged care, he had unplanned hospital visits due to complications from dementia and infections. He also has positive indicators on the SPICT^TM for dementia.

John’s Australia-modified Karnofsky Performance Status (AKPS) (37kb pdf) scale score was 40. This indicates he was in bed more than half of the time and has greater dependence requiring considerable assistance. John also lost weight and has severe arthritis pain despite ongoing treatment. .

Clinical tools help guide care planning, symptom management, and communication with John’s family.

Care workers used the Stop and Watch Early Warning Tool (481kb pdf) form to identify and report a decrease in John’s appetite and refusal to eat with subsequent weight loss. John was assessed again with the AKPS to determine changes in overall performance status. His score is now 30, indicating that he is unable to weight bear, is bedfast and requires considerable assistance.

John's arthritis pain is a significant issue. The healthcare team uses both the non-verbal Abbey Pain Scale (42kb pdf) to evaluate his pain levels and the verbal the Numeric Rating Scale (NRS) (30kb pdf). They ask John “can you tell me how bad the pain in your knees and back is?” or “where does it hurt?” This will help them have a better understanding of his pain. The team implement a comprehensive pain management plan, including both pharmacological and non-pharmacological approaches, such as physical therapy and massage.

The team also use the Integrated Palliative Outcomes Scale for Dementia (IPOS-DEM), which is a recognised comprehensive assessment and outcome measure for people with dementia at all stages. The scale assesses common symptoms that the person may have been affected by over the previous week. Symptoms where John scores 3 or 4 require a timely response. These include pain, weakness, sleepiness, loss of mobility and swallowing deficit (holding food and fluid in his mouth). Emily’s anxiety about her father is also noted.

Over the past weeks staff have observed significant changes in John’s behaviour. He has shown refusal to being touched or moved. His movements are slower and on occasion he has refused to walk. John is calling for help more frequently. He now refuses attending activities he once enjoyed and has less interest in social interaction. John appears to respond to Emily’s concern, and he becomes anxious and distressed when she leaves.

The home’s monthly Palliative Care Needs Rounds (PCNR) (5MB pdf) meeting with the clinical team and the Palliative Care CNC or Specialist Palliative Care Team member (where available) used the PCNR checklist and a case-based education model to develop an outcomes-based plan of care. The discussion covered John’s physical, psychological and social status. The meeting also focused on his current treatments; how to promote holistic symptom management; and anticipatory planning.

Palliative Care Case Conference

Emily and the multidisciplinary team hold a palliative care case conference on a pre-arranged date and time to review John’s health and wellbeing and revise his care goals. John declines to attend as he is increasingly sleepy and prefers to remain in his bed.

Given John's advanced dementia and significant pain, the healthcare team recommends palliative care to focus on comfort and quality of life. Sue the RN has recorded a summary of the case conference below.

• Attendees: Emily Smith (daughter), Dr. Jane Brown (GP), Sue Lee (Registered Nurse), Jen Singh (Palliative Care Clinical Nurse Consultant), Mark Danks (lifestyle coordinator), Laura Green (care worker), and Tom White (physiotherapist).
• Current Status: John is experiencing significant cognitive and physical decline and has severe arthritis pain. He is now bedfast and unable to weight bear.
• Screening Tools: The Surprise Question was used as a prompt for palliative care and the SPICT™ identified deterioration due to life-limiting conditions.
• Assessment Tools: FAST (Stage 6e), AKPS (score of 30) to assess functional decline.
• Concerns: Emily is worried about John's rapid decline and feels guilty about his condition.

Care Goals for John

1. Provide comfort care and nutritional support
   • Alleviate John’s arthritis pain and ensure comfort by doing a full pain assessment using verbal and non-verbal pain assessments. Ensure effective pain management using both pharmacological and non-pharmacological approaches. Continue to regularly monitor his pain. Refer John for physiotherapy review.
   • Maintain nutritional intake and monitor John’s weight to prevent further weight loss. Refer him for swallowing assessment and dietary modification. Provide John with small, frequent meals and nutritional supplements.
   • Ensure hydration, manage infections promptly, and review medications.
   • Modify John's living environment to support limited mobility and reduce risks. Maintain John's comfort by using an appropriate pressure-relieving mattresses and seating. Ensure safe positioning, have a repositioning schedule and monitor John’s skin integrity.
   • Promote restful sleep and reduce daytime sleepiness by maintaining a calming bedtime routine and environment. Review medications that may contribute to daytime drowsiness.
2. Palliative Care
   • Focus on a palliative care plan that addresses John's deteriorating condition and anticipates his needs.
   • Provide additional support to both John and Emily.
   • Discuss with John’s GP deprescribing and anticipatory prescribing for managing common end-of-life symptoms
3. Social, Occupational Wellbeing, Spiritual and Cultural Care
   • Ensure John’s personal space remains dementia friendly.
   • Provide gentle therapeutic massage.
   • The lifestyle team build from John’s previous interests and will provide regular one to one reading.
   • John’s faith, beliefs, and traditions are acknowledged and respected. This ensures his right to express spirituality in ways that are personally meaningful to him. Scheduled visits from the chaplain provide ongoing spiritual support tailored to his needs.
4. Reduce anxiety and emotional distress for both John and Emily.
   • Provide consistent emotional reassurance and familiar routines for John.
   • Encourage Emily’s involvement in care while supporting her emotional wellbeing. Offer Emily counselling or support group referrals.
   • Provide Emily ongoing support and information on end-of-life care for older people with advanced dementia.
   • Support her emotionally with timely inclusive communication.
5. Schedule regular case conferences to review John’s progress and adjust care goals.
   • Align care with John’s values and preferences. Document goals of care and preferred interventions.
   • Ensure all staff are aware of John’s palliative status and care preferences.
   • Respect John’s wish not to die in hospital as documented in his Advance Care Directive.
   • Hold regular follow-up meetings to adjust the care plan as needed.
   • Review the need for Specialist Palliative Care Support.
   • Maintain communication between GP, nurses, physiotherapist, lifestyle coordinator, and palliative care specialists.

Teamwork

A multidisciplinary approach in providing palliative care for John involves his daughter Emily, GP, a palliative CNC, care worker, lifestyle, and a physiotherapist. The team use a holistic, person-centred approach by collaborating to address John's physical, cognitive, and emotional needs, while respecting his individual preferences. This also includes social support for both John and Emily.

Referrals to speech pathology and chaplaincy also provide valuable input. A Specialist Palliative Care Team, where available, may be called upon when clinical needs become complex. John's health and emotional needs are better addressed through collaboration, teamwork and coordinated comprehensive care. This reduces the risk of overlooked issues and improves overall health outcomes.

Over the following month John’s condition deteriorates, his condition is monitored, and care goals are reviewed. Ensure continuity of care to promptly identify and respond to any deterioration. This includes changes related to John’s primary diagnosis of dementia, as well as other emerging medical concerns. Reassessment to distinguish between deterioration that is due to untreatable causes, such as disease progression or reversible causes is essential. A full clinical reassessment for John is done, including for pain and other symptoms. There is a consultation with John’s GP.

John’s daughter Emily is contacted regarding his deteriorating condition and that John no longer has decision-making capacity. By maintaining continuity of care, the healthcare team can better manage John's condition, provide timely interventions, and support both John and Emily through his dementia journey. In addition to the chaplaincy support, RN Sue has provided Emily with links and information to valuable resources. These include the How do I know if someone with dementia is dying? from Dementia Support Australia and information on the Carer Gateway counselling services.

A few days go by, and John has become increasingly drowsy and withdrawn. He refuses all food and fluid and remains bedbound needing full assistance with all care. On assessment he meets five of the Residential Aged Care End of Life Care Pathway (RAC EoLCP; Queensland Health) signs and symptoms associated with the terminal phase. These include:

• Experiencing rapid day-to-day deterioration that is not reversible
• Requiring more frequent interventions
• Becoming semi-conscious, with lapses into unconsciousness
• Refusing or unable to take food, fluids or oral medications
• Profound weakness.

As John no longer has decision-making capacity, the multi-disciplinary team and Emily agree that John is dying. The RAC End of Life Care Pathway is commenced. John’s medications are reviewed and further deprescribing occurs. Anticipatory medications orders have been in place and the decision to commence a syringe driver for symptom management is made.

Emily remains by John's side and is supported by family and friends. The home gives her comfort by providing a reclining armchair, personal care items, coffee shop vouchers, and regular updates on John. The team follow John’s wishes and play his favourite music as outlined in his Advance Care Directive. Chaplaincy services continue to offer emotional and spiritual support throughout this time; John dies peacefully in the home with Emily present.

The after-death care for John involved several sensitive and important steps, such as family consultation and support of Emily’s wishes to assist in aspects of bathing her father. John’s belongings were sensitively packed using Emily’s choice of a family suitcase.

The Birth, Deaths and Marriages Registration Act require Verification of Death by a nurse or doctor. John’s GP made a formal diagnosis of the cause of death and reported this via a Medical Certificate of Cause of Death (MCCD).

Sue gets in touch with Emily following John’s death to offer her support and she lets Emily know the team is available to talk about how she is coping. She also gives Emily a bereavement pack that contains information about grief, bereavement and relevant support services.

The home undertakes personalised and respectful vale practices within the aged care setting. These include meaningful activities to honour John, including a memory book of compiled photos and stories signed by care workers and others. The home holds a regular memorial service organised for family, friends, other older people in the home and staff. This is a way they can share memories and celebrate the lives of people now deceased. A battery-operated candle and a framed photo of John are displayed in a dedicated alcove to remember John.

All these gestures commemorate John’s life and provide comfort to those who loved them. This process ensures that the deceased is treated with dignity and respect, while also supporting the bereaved family and community.