Case Study - Dorothy

• Explore Dorothy’s physical needs, including:
  - her perception of her symptoms
  - what is concerning her most
  - the impact of her symptoms.
• Use the Symptom Assessment Scale (SAS) (577kb pdf) to support this discussion and identify the relevant physical problems.
• Review the identified issues thoroughly, in particular, Dorothy’s
  - shortness of breath/dyspnoea
  - discomfort/pain
  - fatigue
  - leg swelling.
• Review the impact of previous management of each of these symptoms.
• Alongside comprehensive physical assessment and measurement of vital signs, also use several clinical tools to review the identified symptoms over time, including:
  - The Modified Borg Scale (181kb pdf) to measure the intensity of the sensation of breathlessness.
  - The Modified Resident’s Verbal Brief Pain Inventory (112kb pdf) for ongoing assessment of pain.

• Consider the impact of Dorothy’s current health issues on her, as well as her family. Note that her fatigue and mood seem to have increased her social isolation within the residential care setting.
• Explore her social wellbeing through initial questions, such as:
  ​​​​​​-  'Who do you feel supported by at the moment?
  -   What sort of support do they provide?
  -   What has this been like for you?
  -   Are there other kinds of support that you would have liked, but haven’t received?
  -   What in particular is worrying you most about Michael and Sarah?
• Take this opportunity to revisit Dorothy’s advance care plan, including her preferences for intervention regarding her symptoms, and place of care.
• To support this aspect of the needs assessment, plan a meeting with Dorothy, Michael and Sarah, in person or on the phone to discuss the goals of care and review Dorothy’s advance care plan (See the Next Steps section below).

• Dorothy may have increased symptoms of depression and/or anxiety. Further explore her psychological wellbeing with gentle initial questions. Examples of the types of wellbeing questions to ask include:
  • Mood:
    -  Can you tell me about your mood, Dorothy? What is it like at the moment?
    -  Is there anything that brings comfort or that you look forward to?
  • Coping with/impact of illness:
    -  What is your understanding of what is happening, now?
    -  How do your current health issues impact your thoughts and feelings?
  • Past mental health concerns:
    -  Have you ever faced struggles in the past with your thoughts and feelings?
    -  How did you manage these? (i.e. Has Dorothy had previous mental health concerns, psychological interventions/counselling, or pharmacological management?)
• Use clinical tools such as The Geriatric Depression Scale (217kb pdf) to further explore the nature and impact of current symptoms.
• Be aware of other issues that may be impacting Dorothy’s mental health and psychological wellbeing at this time:
  -  Dorothy’s grief due to Gerald’s death appears to be significant.
  -  Dorothy may have experienced trauma due to her time in institutional care as a child. She appears to be reviewing related memories of this time.

• Review Dorothy’s spiritual needs, beliefs and sources of meaning or distress. Explore issues such as:
  • Sources of hope/comfort/peace
    An example: Does anything give you comfort at the moment, even in a small way? Activities like listening to music or being in nature.
  • Personal practices or beliefs
    An example: Are there particular beliefs, or anything you do, that is meaningful or helpful at the moment? Or someone can do for you?
  • Impact on care
    Examples include:
    -  How would you like us to respect these beliefs and needs in the way we care for you at this time?
    -  Tell me what I need to know about you in order to provide the best possible care for you?

Dorothy receives regular monitoring and management of her physical symptoms. Approaches to specific symptoms are outlined below.
Dyspnoea:

• Oxygen therapy is regularly assessed and titrated, to keep Dorothy’s oxygen saturation levels in an acceptable range.
• She may also benefit from non-pharmacological interventions to ease her breathing. An example is positioning, such as propping her up with pillows, or having the flow of fresh air from a window or small fans.
• Maintaining oral hygiene (559kb pdf) is also important for wellbeing and supports management of dyspnoea.
• Additionally, medications like opioids (morphine) may be used to reduce dyspnoea by reducing the sensation of breathlessness. Diuretics may be helpful in reducing oedema. Medications should be reviewed, and some may be deprescribed where they are no longer needed.

Fatigue:

• Care planning includes rest periods for Dorothy. The use of assistive devices (walker, wheelchair) can support her mobility while minimising her fatigue.
• All activities are paced to Dorothy’s capacity. For example, showering may be replaced with bed baths on days of extreme fatigue.

Pain:

• Dorothy’s breathing discomfort associated with her heart failure and generalised pain is regularly reviewed using The Modified Resident’s Verbal Brief Pain Inventory (112kb pdf). Symptoms are managed with appropriate analgesics as needed.
• Paracetamol (orally), anxiolytics, and slow release and immediate opioids (morphine) given through regular and breakthrough doses may assist with Dorothy’s pain, anxiety and dyspnoea.

Anticipatory prescribing:

• Oral and later subcutaneous medications (where Dorothy’s ability to swallow has decreased or ceased, or where Dorothy becomes more sleepy or difficult to rouse).

Approaches include attention to strategies that attempt to support Dorothy’s connection with family and others, and reduce her isolation as much as possible, including:

• Supporting lower intensity social engagement for Dorothy within the residential care setting and according to her preferences. Consider the times of day that Dorothy may have more energy. Examples such as lifestyle team members bringing comfort through one-to-one engagement and setting up music and other personalised programs.
• Ongoing communication with Dorothy’s family, especially as her health declines. This should include:
  • Family meetings: This can be done via phone or online with Michael and Sarah. Meetings ensure they are updated and involved in decisions about Dorothy’s care. This also allows time to explore any concerns they may have.
  • Sharing basic information about end of life, palliative care and grief.

Approaches relate to the need to further explore and support mental health needs potentially related to depression, grief and trauma that may include:

• Recognising and normalising Dorothy’s feelings in the course of ongoing care, interactions and support. For instance, 'It sounds like you’re feeling very low today, Dorothy. This is so understandable at the moment with all that’s going on for you'. Follow this by listening and providing support as needed. This may also involve recognising Dorothy’s grief, and responding to the times she mentions Gerald. For instance, 'Can you tell me a little more about Gerald/how you met/what your relationship was like?'
• Specialist psychological interventions to address symptoms of depression and/or anxiety, and to provide further assessment and support regarding grief and/or trauma. This could be with a counsellor, social worker or psychologist depending on assessment, availability and Dorothy’s consent.

It appears Dorothy may be experiencing spiritual and existential distress in the context of her declining health. Approaches include attention to:

• Supporting Dorothy to identify and engage with meaningful activities that are less physically demanding. Such as sitting in gardens.
• Supporting opportunities for meaning-making, through assisting Dorothy to engage with activities such as life review or the creation of memory books.
• Providing Dorothy with the option of engaging with forms of spiritual support to discuss spiritual concerns and reflections. This could be with a chaplain or pastoral care worker.

The General Practitioner (GP) is responsible for managing Dorothy’s overall medical care, and coordinating with specialist services, through:

• Assessment and oversight of Dorothy’s chronic conditions, particularly her heart failure. Also managing medications and coordinating with specialist care as needed, which may include cardiology and palliative care.
• Prescribing and regularly reviewing medications to alleviate Dorothy’s symptoms, such as pain and dyspnoea.
• Ensuring that the approach to palliative care is aligned with Dorothy’s goals of care.
• Reviewing and supporting Dorothy’s advance care plan. This includes facilitating discussions about end-of-life care preferences, and assisting Dorothy and her children to make informed decisions about life-sustaining interventions.
• Collaborating with all team members to ensure they are updated on Dorothy’s condition and any changes related to her care.

A Nurse Practitioner (where available) may be key to coordinating Dorothy’s overall care and coordinating with specialist services. In some settings, a Nurse Practitioner may be responsible for managing the overall care instead of a GP, through:

• Comprehensive assessment of Dorothy’s chronic conditions, managing medication, and liaison with specialist care as needed, such as cardiology or/and palliative care.
• Care planning and coordination in collaboration with other involved team members.
• Managing Dorothy’s symptoms through prescribing medications, coordinating treatment and coordinating psycho-social support.
• Reviewing and supporting Dorothy’s advance care plan. This may include the facilitation of discussions about her preferences and wishes with the involvement of her children and to guide informed decisions about life-sustaining interventions.
• Educating other team members about palliative care and any complex symptoms as they coordinate Dorothy’s care.
• Mentoring other clinicians in real time as Dorothy’s care unfolds and to build their skills in communication, advance care planning, assessment, providing care, managing dying and providing support for family.

Registered Nurses play a central role in coordinating Dorothy’s overall care, ensuring her symptoms are well-managed, and supporting continuity of care, through:

• Regular, ongoing assessment of Dorothy’s physical symptoms and consideration of the other domains of wellbeing (psychological, social and spiritual).
• Providing emotional and spiritual support in the course of ongoing care interactions with Dorothy.
• Assessment, care planning, coordination and collaboration with the entire team, including communicating about changes to other team members.
• Communication with Dorothy and her family about changes in her condition and management of symptoms.

Care Workers play a key role in a holistic approach to Dorothy’s ongoing care, comfort and safety, by:

• Observing and reporting changes in Dorothy’s condition, such as signs of discomfort, decreased mobility, or changes in mental state. Care workers report these observations to the registered nurse or other healthcare professionals, to ensure adjustments to the care plan are made promptly, as needed. Care workers may also be trained to apply daily Symptom Assessment Scale (SAS) (577kb pdf) and use the Stop and Watch Early Warning Tool (481kb pdf) to record observed changes.
• Supporting Dorothy’s mobility by using devices as needed, such as a walker or wheelchair.
• Maintaining Dorothy’s safety with access to call systems, equipment for transfers and regular monitoring.
• Assisting with repositioning to alleviate Dorothy’s discomfort and improve her circulation.
• Providing basic emotional and spiritual support, including listening with empathy to Dorothy’s concerns and feelings.

The Allied Health Team play a key role in a person-centred approach to Dorothy’s ongoing care, comfort and safety:

• An occupational therapist can assess and arrange appropriate equipment, including pressure relieving mattresses and lifting/transfer devices.
• A speech pathologist and dietician can review Dorothy’s declining appetite and swallowing, enabling nutrition and hydration through a modified diet.
• Lifestyle team members can facilitate life history/review activities, and provide comprehensive programs to support wellbeing involving personal music, movies, reminiscence and other engagement.

The Service Manager oversees the implementation of the care plan and ensures that the facility provides high quality palliative care, through:

• Coordination of care and communication between team members and health professionals to ensure Dorothy’s preferences and needs are being addressed.
• Ensuring the facility has the appropriate resources to support care for Dorothy at the end of life. Examples include team members, equipment, and medications.
• Considering and facilitating referral to external services as appropriate, such as Specialist Palliative Care. This should be in collaboration with other team members, like a GP.
• Ensuring that Dorothy’s family is supported and receives information about care. For instance, through family meetings and other communication. Additionally, addressing any concerns or questions the family may have about the care process.
• Ensuring the care is aligned with the Strengthened Standards, and is continuously evaluated and improved.

A Pastoral Care Worker, Pastoral Coordinator or Chaplain can provide spiritual care and emotional support. They can achieve this through supporting Dorothy to reflect on her beliefs, values, and ways of making sense and meaning during the end of life.

A Psychologist or Social Worker can support Dorothy’s psychological and emotional wellbeing. This is facilitated through therapeutic interventions related to her mental health, grief, and end of life. Support may involve Dorothy’s children, including the offer of guidance on how to support Dorothy and manage their own possible distress and anticipatory grief.