Domain – Palliative care (case)

Pamela is 74 years old and comes to see you with her son. She has recently moved to your area from interstate, to be closer to family.

Pamela was diagnosed with breast cancer seven years ago, which was treated with bilateral mastectomy and adjuvant chemotherapy and radiotherapy. She was in remission until two years ago when she was diagnosed with metastatic recurrence in her liver and multiple bone metastases. At her follow-up telehealth oncology appointment a few days ago, Pamela was told by her oncologist that her cancer had progressed, and ‘no further treatments were available’. She was advised to see her new GP to ‘arrange palliative care’. Pamela is concerned that she’s getting a lot of back pain, and says she feels quite tired and ‘like life is not worth living anymore’. Her son is also concerned about his mother’s recent weight loss, as she has been struggling to eat much lately.

Communication and consultation skills
How might Pamela be feeling after her recent consultation with the oncologist? What about her son?
What communication skills might be useful to support Pamela and develop a trusting therapeutic relationship in this first consultation with her?

Pamela is likely experiencing a range of emotions following her recent consultation with the oncologist, including:

1. Fear and Anxiety: The news of her cancer progression and the lack of further treatment options can be incredibly distressing, causing anxiety about her future and her remaining time.
2. Hopelessness and Despair: Pamela’s statement that she feels “like life is not worth living anymore” indicates a profound sense of hopelessness and despair.
3. Sadness and Grief: She may be grieving the loss of her health, independence, and the life she once knew.
4. Physical Discomfort: Her back pain and fatigue are likely contributing to her overall distress and sense of well-being.
5. Isolation and Loneliness: Moving to a new area and adjusting to a new healthcare team can exacerbate feelings of loneliness and isolation.

Pamela’s son may also be experiencing a range of emotions, such as:

1. Worry and Concern: He is understandably worried about his mother’s health, her pain, weight loss, and overall well-being.
2. Helplessness: He might feel helpless in the face of his mother’s suffering and the inability to improve her condition.
3. Sadness and Grief: He is likely grieving the decline in his mother’s health and the impact it has on their lives.
4. Stress and Anxiety: Caring for a loved one with a terminal illness can be very stressful and anxiety-inducing.

Communication Skills to Support Pamela and Develop a Trusting Therapeutic Relationship

1. Active Listening: Give Pamela your full attention, listen without interrupting, and acknowledge her feelings and concerns. Use verbal cues like “I see,” “I understand,” and “Tell me more about how you’re feeling.”
2. Empathy: Express empathy by validating her emotions. For example, “I can’t imagine how difficult this must be for you” or “It sounds like you’re going through an incredibly tough time.”
3. Open-Ended Questions: Encourage Pamela to share more about her experiences and feelings with questions like “Can you tell me more about the pain you’re experiencing?” or “How have you been coping with everything?”
4. Reassurance and Support: Assure Pamela that you are here to support her through this difficult time. For instance, “We’re going to work together to manage your symptoms and make sure you’re as comfortable as possible.”
5. Information and Clarity: Provide clear, concise information about palliative care and what it entails. This can help alleviate some of the fear of the unknown. Explain the focus on symptom management, quality of life, and support for both her and her family.
6. Building Rapport: Establish a connection by showing genuine interest in Pamela as a person, not just a patient. Ask about her life, interests, and family to create a more personal and trusting relationship.
7. Collaborative Goal Setting: Work with Pamela and her son to set realistic and achievable goals for her care, focusing on what is most important to her at this stage of her life. This might include pain management, improving appetite, or addressing emotional well-being.
8. Addressing Emotional and Psychological Needs: Acknowledge the emotional toll of her diagnosis and progression. Consider referrals to counseling or support groups for both Pamela and her son to help them cope with their feelings.
9. Body Language and Non-Verbal Cues: Use positive body language, such as maintaining eye contact, nodding, and leaning slightly forward, to convey attentiveness and concern.
10. Follow-Up and Continuity of Care: Schedule regular follow-up appointments to monitor Pamela’s condition and adjust her care plan as needed. Continuity of care helps build trust and ensures that she feels supported throughout her journey.

Clinical information gathering and interpretation
What information from Pamela would help you create a management plan for her main symptoms?
What information would be useful to gather from her treating oncologist? What about from Pamela’s family?

To create a management plan for Pamela’s main symptoms, the following information would be crucial:

1. Pain Description:
   • Location, intensity, and nature of the back pain (e.g., sharp, dull, constant, intermittent).
   • Factors that exacerbate or relieve the pain.
   • Current pain management strategies and their effectiveness.
2. Fatigue:
   • Duration, onset, and severity of fatigue.
   • Impact of fatigue on daily activities and quality of life.
   • Any patterns or triggers related to fatigue.
3. Appetite and Weight Loss:
   • Current eating habits and dietary intake.
   • Specific foods or drinks that are well-tolerated or cause issues.
   • Recent changes in weight and appetite.
   • Any associated symptoms like nausea, vomiting, or changes in taste.
4. Psychological and Emotional State:
   • Feelings of despair and hopelessness.
   • Presence of anxiety, depression, or other mental health concerns.
   • Coping mechanisms and support systems.
5. Functional Status:
   • Ability to perform activities of daily living (ADLs) independently.
   • Need for assistance with personal care or mobility.
6. Medications and Treatments:
   • Current medications, including dosages and any over-the-counter drugs or supplements.
   • Previous treatments and their outcomes.
   • Any allergies or adverse reactions to medications.
7. Social and Support Context:
   • Living situation and daily support.
   • Key family members or caregivers involved in her care.
   • Her goals and priorities for her remaining time and quality of life.

Information from the Treating Oncologist

From Pamela’s treating oncologist, the following information would be useful:

1. Medical History and Treatment Summary:
   • Detailed history of her breast cancer, including staging and specific treatments received (chemotherapy, radiotherapy, surgeries).
   • Timeline of disease progression and recurrences.
2. Current Disease Status:
   • Details about the metastatic sites (liver and bone) and any recent imaging or lab results.
   • Prognosis and expected disease trajectory.
3. Symptom Management Recommendations:
   • Previous and current management strategies for pain, fatigue, and other symptoms.
   • Any recommended changes or additions to her current symptom management plan.
   • Guidance on managing potential side effects of any suggested treatments.
4. Coordination of Care:
   • Suggestions for palliative care services, including any specific referrals or resources.
   • Preferred communication channels for ongoing updates and coordination.

Information from Pamela’s Family

From Pamela’s family, especially her son, the following information would be helpful:

1. Daily Observations:
   • Their observations of Pamela’s symptoms, including any changes in behavior, mood, or physical condition.
   • Specific concerns they have noticed, such as times when pain is worse or any changes in her eating or sleeping patterns.
2. Support and Care Needs:
   • Their capacity to provide physical, emotional, and practical support.
   • Any additional resources or support they might need to care for Pamela effectively.
3. Family Dynamics and Preferences:
   • Family preferences and goals for Pamela’s care.
   • Understanding their expectations and any cultural or personal considerations that might impact care decisions.
4. Emotional and Psychological Impact:
   • The emotional toll on the family and their coping mechanisms.
   • Any signs of caregiver stress or burnout.

Making a diagnosis, decision making and reasoning
What might be causing Pamela’s loss of appetite, weight loss and pain? How might knowing the cause help you manage those symptoms?
Are there any investigations that might help in this assessment?

Potential Causes of Pamela’s Symptoms

1. Loss of Appetite and Weight Loss:
   • Cancer Cachexia: A syndrome characterized by weight loss, muscle wasting, and decreased appetite commonly seen in advanced cancer patients.
   • Liver Metastases: Metastatic cancer in the liver can impair liver function, leading to anorexia, nausea, and weight loss.
   • Pain and Discomfort: Chronic pain can reduce appetite and contribute to weight loss.
   • Depression: Psychological factors, including depression and anxiety, can significantly impact appetite and eating habits.
   • Medications: Side effects of chemotherapy, pain medications, or other drugs can include nausea, vomiting, and decreased appetite.
2. Pain:
   • Bone Metastases: Bone metastases can cause severe pain due to bone destruction and nerve compression.
   • Liver Metastases: Liver involvement can lead to referred pain in the back and abdomen.
   • Musculoskeletal Issues: Secondary muscle tension and stress related to her overall condition can contribute to back pain.
   • Neuropathic Pain: Caused by nerve damage from cancer or its treatments.

Management Based on Causes

Knowing the cause of these symptoms can help tailor management strategies:

1. Cancer Cachexia:
   • Nutritional support and counseling.
   • Medications to stimulate appetite (e.g., megestrol acetate, corticosteroids).
   • Management of underlying cancer progression to stabilize symptoms.
2. Pain Management:
   • Bone Metastases: Use of analgesics (NSAIDs, opioids), bisphosphonates, or radiotherapy to manage bone pain.
   • Liver Metastases: Pain management with appropriate medications, possible interventional procedures like nerve blocks.
   • Neuropathic Pain: Medications such as gabapentin or pregabalin.
3. Psychological Support:
   • Addressing depression and anxiety with counseling, psychotherapy, and medications if necessary.
   • Palliative care and support groups for emotional and psychological support.
4. Medication Review:
   • Assess and manage side effects of current medications.
   • Adjust medications to minimize impact on appetite and gastrointestinal function.

Investigations to Aid Assessment

1. Blood Tests:
   • Full Blood Count: To check for anemia or signs of infection.
   • Liver Function Tests: To assess liver function and damage.
   • Electrolytes and Renal Function: To monitor overall metabolic status and detect imbalances.
   • Tumor Markers: might be not helpful at this stage as she is palliative, Rising levels of tumor markers can be an early indicator of cancer recurrence
     • CA 15-3 and CA 27.29:
       • These are the most commonly used markers for monitoring breast cancer.
       • Elevated levels can indicate the presence of breast cancer, particularly metastatic disease.
       • They are useful in monitoring response to treatment and detecting recurrence.
     • Carcinoembryonic Antigen (CEA):
       • CEA is another marker that can be elevated in breast cancer patients.
       • It is less specific than CA 15-3 and CA 27.29 but can be useful in conjunction with these markers.
     • HER2/neu (ErbB-2):
       • Overexpression or amplification of the HER2 gene is found in approximately 20-25% of breast cancers.
       • HER2 status is critical for determining eligibility for targeted therapies like trastuzumab (Herceptin).
       • Serum levels of HER2/neu can also be monitored in some cases to track disease progression and response to treatment.
     • Estrogen Receptor (ER) and Progesterone Receptor (PR):
       • While not traditional “tumor markers” in the sense of being blood-based assays, the status of ER and PR in tumor tissue is crucial for determining prognosis and treatment options.
       • These receptors are typically evaluated through tissue biopsy rather than blood tests.
2. Imaging Studies:
   • CT Scan or MRI: To evaluate the extent of liver and bone metastases, and to assess any changes since the last imaging.
   • Bone Scans: To identify and assess the extent of bone metastases.
3. Nutritional Assessment:
   • Detailed dietary intake history and assessment by a dietitian.
   • Body Mass Index (BMI) and other anthropometric measurements.
4. Pain Assessment Tools:
   • Use of validated pain assessment scales (e.g., Visual Analog Scale, Numeric Rating Scale) to quantify pain levels.
   • Multidimensional tools to assess the impact of pain on daily functioning.
5. Psychological Evaluation:
   • Screening for depression and anxiety using tools like the DASS 21 or Generalized Anxiety Disorder 7-item (GAD-7) scale.

Clinical management and therapeutic reasoning
How might the way you manage Pamela’s appetite and weight loss change, depending on what the cause is?
What options could you consider to manage Pamela’s back pain?
How might these options change as Pamela’s symptoms evolve over the coming weeks or months?
If Pamela lived in a rural or remote area, with limited access to tertiary palliative care services, how might this affect her goals of care and the treatment options for complex symptoms?

Managing Pamela’s Appetite and Weight Loss Based on the Cause

1. Cancer Cachexia:
   • Nutritional Support: Involve a dietitian to create a high-calorie, high-protein diet plan tailored to her preferences and tolerances.
   • Appetite Stimulants: Medications such as megestrol acetate, corticosteroids, or dronabinol can help stimulate appetite.
   • Medical Nutrition Supplements: Provide oral nutritional supplements that are easy to consume and nutrient-dense.
   • Frequent, Small Meals: Encourage small, frequent meals rather than large ones to make eating more manageable.
2. Liver Metastases:
   • Symptom Management: Address nausea, early satiety, and discomfort with antiemetics, prokinetics, and small, frequent meals.
   • Dietary Adjustments: Focus on easily digestible, low-fat foods to reduce the burden on the liver.
3. Pain and Discomfort:
   • Effective Pain Control: Properly managing pain can improve overall well-being and appetite. Adjust pain medications as needed for better control.
   • Physical Therapy: Gentle physical activity and physical therapy can help improve appetite by reducing pain and increasing overall energy levels.
4. Depression and Psychological Factors:
   • Psychological Support: Provide counseling or therapy to address depression and anxiety. Antidepressant medications may also be considered.
   • Medications: Use of antidepressants that have minimal side effects on appetite and weight.
5. Medication Side Effects:
   • Review and Adjust Medications: Evaluate current medications for side effects that affect appetite and weight. Adjust dosages or switch to alternative medications if necessary.

Options for Managing Pamela’s Back Pain

1. Pharmacological Management:
   • Analgesics:
     • mild pain medicines, such as paracetamol or non-steroidal anti-inflammatory drugs (NSAIDs)
     • moderate pain medicine, such as codeine
     • strong pain medicine, such as the opioids morphine, hydromorphone, oxycodone and fentanyl
   • Adjuvant Medications: Consider adjuvants like gabapentin or pregabalin for neuropathic pain.
   • Corticosteroids: For inflammation and pain relief, particularly in cases of spinal cord compression or nerve involvement.
   • Nerve Block
   • Radiotherapy : well-established treatment, effective in reducing pain related to painful bony metastases and decreasing the need for analgesia
     • Radiotherapy is not painful and treatment sessions often only last several minutes.
     • Palliative courses of radiotherapy for bone metastases are generally delivered over a short period of time, ranging from a single treatment or fraction up to a maximum of 5–10 fractions, minimising patient inconvenience.
     • Stereotactic radiotherapy, a specialised form of highly conformal ablative radiotherapy, may be recommended in highly selected cases.
2. Non-Pharmacological Management:
   • Physical Therapy: Gentle exercises and physical therapy to strengthen muscles and improve mobility.
   • Occupational Therapy: Assistance with adaptive strategies for daily activities to reduce pain triggers.
   • Complementary Therapies: Techniques such as acupuncture, massage, and relaxation exercises.
3. Interventional Procedures:
   • Radiotherapy: Targeted radiation therapy to bone metastases can significantly reduce pain.
   • Nerve Blocks: Interventional procedures to block pain pathways.

Evolution of Pain Management Over Time

As Pamela’s symptoms evolve, the approach to managing her pain may need to be adjusted:

• Increased Pain Intensity: Increase the dosage of opioids or switch to stronger pain medications such as fentanyl or methadone.
• Breakthrough Pain: Provide short-acting opioids for episodes of breakthrough pain.
• Side Effects Management: Monitor and manage side effects from pain medications, such as constipation, nausea, or drowsiness.
• Functional Decline: Emphasize non-pharmacological methods and supportive care as physical function declines. Use of sedative medications to manage severe pain and distress in the final stages of life may become necessary.

Impact of Living in a Rural or Remote Area

Living in a rural or remote area with limited access to tertiary palliative care services could significantly impact Pamela’s care:

1. Access to Care:
   • Telemedicine: Utilize telehealth for consultations and follow-ups with specialists.
   • Local Healthcare Providers: Engage local primary care physicians and nurses in providing palliative care.
   • Community Support Services: Leverage local community support and resources, including visiting nurses and palliative care volunteers.
2. Goals of Care:
   • Realistic Goals: Adjust goals to focus on achievable outcomes given the limitations of local healthcare services.
   • Emphasis on Comfort: Focus on symptom management and quality of life rather than aggressive treatments.
3. Treatment Options for Complex Symptoms:
   • Simplified Treatment Plans: Adapt treatment plans to include medications and therapies that can be managed locally.
   • Education and Empowerment: Train family members and local caregivers to manage symptoms and administer medications.
   • Resource Utilization: Use available local resources, including community health workers and local hospice services.
4. Coordination of Care:
   • Integrated Care Model: Develop an integrated care model involving primary care providers, specialists via telehealth, and community resources.
   • Communication: Ensure clear and continuous communication between all parties involved in Pamela’s care to provide cohesive and coordinated management.

Preventive and population health
When and how would it be appropriate to involve substitute decision-makers in treatment and care decisions?
If Pamela was an Aboriginal or Torres Strait Islander, how might this affect decisions about treatment and where she might want to receive end-of-life care? Where might you obtain further knowledge about communicating with Aboriginal and Torres Strait Islander peoples and their communities in a palliative setting, and information on the culture and practices that may be relevant?

Involving Substitute Decision-Makers in Treatment and Care Decisions

1. When to Involve Substitute Decision-Makers:
   • Incapacity: When Pamela is no longer able to make informed decisions about her treatment and care due to cognitive or physical decline.
   • Complex Decisions: When complex or high-stakes decisions need to be made and Pamela prefers to involve her substitute decision-maker.
   • End-of-Life Care Planning: Early in the care process, particularly for discussions about goals of care, advance directives, and end-of-life preferences.
2. How to Involve Substitute Decision-Makers:
   • Identification: Ensure that Pamela has designated a substitute decision-maker (SDM) formally, such as through a power of attorney or advance care directive.
   • Communication: Have clear and open communication with both Pamela and her SDM. Ensure that the SDM understands Pamela’s wishes, values, and goals of care.
   • Documentation: Document all discussions and decisions made involving the SDM to ensure clarity and legal compliance.
   • Regular Updates: Keep the SDM informed about changes in Pamela’s condition and treatment plan to facilitate timely and appropriate decision-making.

Considerations for Aboriginal and Torres Strait Islander Patients

1. Cultural Sensitivity:
   • Family and Community Involvement: Aboriginal and Torres Strait Islander cultures often place significant importance on family and community involvement in decision-making. Involving family members and respecting their input can be crucial.
   • Traditional Practices: Respect and incorporate traditional healing practices and cultural rituals, if desired by the patient and family.
2. End-of-Life Care Preferences:
   • Location of Care: Many Aboriginal and Torres Strait Islander people prefer to receive end-of-life care on their ancestral land or within their community. Respecting and facilitating this preference is important.
   • Cultural Practices: Be aware of and accommodate any specific cultural practices related to death and dying, such as specific rituals, use of traditional healers, or community gatherings.

Further Knowledge and Resources

1. Educational Resources:
   • Palliative Care Australia: They provide resources and guidelines on culturally appropriate palliative care for Aboriginal and Torres Strait Islander peoples.
   • The Australian Indigenous HealthInfoNet: Offers information and resources on Indigenous health, including end-of-life care.
   • Local Health Services: Many health services have cultural liaison officers or Indigenous health workers who can provide guidance and support.
2. Training and Workshops:
   • Cultural Competency Training: Participate in training programs and workshops that focus on cultural competency and sensitivity in healthcare, specifically tailored to Aboriginal and Torres Strait Islander communities.
   • Local Elders and Community Leaders: Engage with local Aboriginal and Torres Strait Islander elders and community leaders to gain deeper insights into cultural practices and preferences.
3. Consultation with Indigenous Health Services:
   • Aboriginal Medical Services (AMS): These services provide culturally appropriate care and can offer advice and support in managing complex cases.
   • Palliative Care Services with Indigenous Programs: Some palliative care services have specialized programs for Aboriginal and Torres Strait Islander patients.
4. Guidelines and Policies:
   • National Guidelines: Refer to national guidelines and policies on Indigenous health and palliative care, which provide frameworks for delivering culturally safe care.
   • State and Territory Health Departments: These often have specific policies and resources for the care of Aboriginal and Torres Strait Islander peoples.

Professionalism
As you support people moving into end-of-life care, what personal reflections and challenges might come up about your own history and family?
In what ways do your views, beliefs, values and cultural attitudes towards death and dying impact on and influence how you approach palliative and end-of-life care?

Personal Reflections and Challenges

1. Emotional Impact:
   • Empathy and Compassion: Supporting patients in end-of-life care can evoke strong feelings of empathy and compassion, reminding you of your own experiences with illness and loss in your family.
   • Grief and Loss: Reflecting on personal losses can bring up unresolved grief or past experiences with death, influencing how you connect with patients and their families.
2. Family Dynamics:
   • Understanding of Family Roles: Your own family dynamics and how end-of-life decisions were made in your family can influence your understanding of patient-family interactions.
   • Coping Mechanisms: Personal experiences with how your family coped with illness and death may affect how you support patients and families in their coping processes.
3. Professional Boundaries:
   • Maintaining Boundaries: Balancing professional boundaries while showing empathy and support can be challenging, particularly if you identify strongly with a patient’s situation.

Views, Beliefs, Values, and Cultural Attitudes

1. Respect for Patient Autonomy:
   • Supporting Autonomy: Your belief in patient autonomy may lead you to prioritize the patient’s wishes and goals in end-of-life care planning.
   • Shared Decision-Making: You may encourage a collaborative approach, involving the patient and family in care decisions.
2. Cultural Sensitivity:
   • Awareness of Cultural Practices: Recognizing and respecting diverse cultural attitudes towards death and dying can influence how you approach care, ensuring it aligns with the patient’s cultural background.
   • Adaptation of Practices: You might adapt care practices to incorporate cultural rituals and preferences, ensuring a respectful and meaningful end-of-life experience.
3. Personal Beliefs and Values:
   • Comfort with Mortality: Your own comfort level with mortality and beliefs about death can impact how you discuss end-of-life issues with patients and families.
   • Value of Palliative Care: Believing in the importance of palliative care may lead you to advocate strongly for symptom management, quality of life, and holistic care.
4. Communication Style:
   • Honesty and Transparency: If you value honesty, you might emphasize clear and open communication about prognosis and treatment options.
   • Sensitivity and Empathy: Balancing honesty with sensitivity to avoid causing undue distress to patients and families.

Influence on Approach to Palliative and End-of-Life Care

1. Patient-Centered Care:
   • Your values might lead you to emphasize patient-centered care, focusing on the individual needs, preferences, and goals of each patient.
2. Holistic Approach:
   • Recognizing the importance of addressing physical, emotional, spiritual, and social aspects of care, ensuring a comprehensive approach to end-of-life care.
3. Advocacy:
   • You may find yourself advocating for the patient’s wishes and needs, especially if they align with your own beliefs about dignity and quality of life.
4. Education and Support:
   • Providing education and support to patients and families about the dying process, pain management, and available resources, informed by your understanding of their concerns and needs.

Reflection and Self-Care

1. Self-Reflection:
   • Regularly reflecting on your experiences, beliefs, and emotions to understand how they influence your care approach and to maintain professional objectivity.
2. Seeking Support:
   • Seeking support from colleagues, mentors, or professional counseling to navigate the emotional challenges of end-of-life care.
3. Continuing Education:
   • Engaging in continuing education on palliative care and cultural competence to enhance your skills and understanding of diverse patient needs.

General practice systems and regulatory requirement
What are the legal and professional requirements for drawing up an advance care directive?
How could you obtain specialist palliative care medications (eg medicinal cannabis, levomepromazine) through the Therapeutic Goods Administration Special Access Scheme?

Legal and Professional Requirements for Drawing Up an Advance Care Directive in Australia

Legal Requirements:

1. Jurisdiction-Specific Legislation:
   • Each state and territory in Australia has its own legislation governing advance care directives (ACDs). It is essential to follow the specific requirements of the jurisdiction where the directive is being made.
   • For example, in New South Wales, ACDs are covered under common law, while in Victoria, the Medical Treatment Planning and Decisions Act 2016 applies.
2. Capacity:
   • The person making the ACD (the principal) must have the capacity to understand, make, and communicate their decisions about their future medical treatment.
3. Voluntariness:
   • The directive must be made voluntarily, without coercion or undue influence.
4. Documentation:
   • ACDs must be documented in writing and typically need to be signed by the principal. Some jurisdictions may require witnessing by specific individuals, such as health professionals or legal representatives.
   • In Victoria, for example, an ACD must be witnessed by two adults, one of whom must be a medical practitioner.
5. Content:
   • The directive should clearly outline the principal’s wishes regarding future medical treatment, including specific treatments they consent to or refuse.
   • It may also include the appointment of a substitute decision-maker (SDM) who can make decisions on behalf of the principal if they lose capacity.

Professional Requirements:

1. Informed Discussion:
   • Healthcare professionals should facilitate informed discussions with the principal about their values, preferences, and medical options to ensure the ACD accurately reflects their wishes.
2. Documentation and Record-Keeping:
   • Ensure that the ACD is documented accurately and stored in a manner that it is accessible to healthcare providers when needed.
   • It should be included in the patient’s medical records and, if applicable, shared with relevant healthcare facilities.
3. Review and Update:
   • Regularly review the ACD with the principal to ensure it remains relevant and reflective of their current wishes. Updates should be made as necessary.

Obtaining Specialist Palliative Care Medications Through the TGA Special Access Scheme

1. Therapeutic Goods Administration (TGA) Special Access Scheme (SAS):
   • The SAS allows health practitioners to access therapeutic goods not included in the Australian Register of Therapeutic Goods (ARTG) for individual patients under certain circumstances.
2. Application Process:
   • Identify the Need: Determine that the patient requires a medication not registered in the ARTG and that no suitable registered alternatives are available.
   • Choose the SAS Pathway: Select the appropriate SAS pathway based on the urgency and nature of the request:
     • Category A: For patients who are seriously ill or whose life is at risk. Notification to the TGA is required.
     • Category B: For patients who do not fall under Category A but still need access. An application must be submitted and approved by the TGA.
     • Category C: For certain types of medical practitioners to access unapproved goods for specific conditions without TGA approval, based on pre-approved conditions and products.
3. Complete the Application:
   • Category A: Fill out the SAS Category A form and notify the TGA within 28 days of supplying the medication.
   • Category B: Submit an SAS Category B form providing detailed clinical justification for the use of the medication, along with supporting documentation.
   • Category C: Follow the guidelines and provide necessary information for the pre-approved conditions and products.
4. Supporting Documentation:
   • Include clinical evidence, patient history, and justification for the necessity of the unapproved medication.
   • Obtain informed consent from the patient, ensuring they understand the risks and benefits of the medication.
5. Approval and Supply:
   • Once the TGA approves the application, the medication can be supplied to the patient.
   • Ensure proper monitoring and reporting of the patient’s response to the medication and any adverse effects.

Procedural skills
Where might you find out which medications are, or are not, compatible within the same syringe driver?
If your practice were in a rural or remote location, would you know how to set up a syringe driver? How could you improve your skills?

Managing uncertainty
How would you discuss prognosis with Pamela and her family?  What information would be helpful for such a discussion?
How would you manage Pamela’s symptoms if you were unsure of their underlying cause?

Discussing Prognosis with Pamela and Her Family

1. Preparation:
   • Review Medical Information: Ensure you have a thorough understanding of Pamela’s medical history, current condition, treatment responses, and latest assessments from her oncologist.
   • Plan the Conversation: Choose a quiet, private setting and ensure there is enough time to have an unhurried, empathetic conversation.
2. Communication Strategies:
   • Establish a Trusting Relationship: Begin by building rapport and demonstrating empathy. Acknowledge the difficulty of the conversation.
   • Gauge Understanding: Ask Pamela and her family what they understand about her condition and prognosis. This helps to tailor the discussion to their level of understanding and concerns.
   • Provide Clear and Honest Information: Use simple, non-technical language to explain the prognosis. Be honest yet compassionate. Avoid giving false hope but also emphasize that support and care will continue.
   • Use Prognostic Tools: If appropriate, refer to specific prognostic indicators or tools (e.g., performance status, symptom burden) to provide a clearer picture of what to expect.
   • Address Uncertainty: Acknowledge the inherent uncertainty in prognosis. Use phrases like “It’s difficult to predict exactly, but based on what we know…” to communicate this uncertainty.
3. Content of the Discussion:
   • Current Status: Summarize Pamela’s current health status and how her disease has progressed.
   • Expected Course: Discuss the likely course of the disease based on available information.
   • Symptom Management: Reassure Pamela and her family that her symptoms will be actively managed to ensure comfort.
   • Support Systems: Highlight the support available from the healthcare team, including palliative care services, social workers, and psychological support.
4. Emotional Support:
   • Acknowledge Emotions: Recognize and validate their emotions, whether it’s fear, sadness, or anger.
   • Encourage Questions: Invite Pamela and her family to ask questions and express their concerns.
   • Provide Reassurance: Reassure them that they will not face this journey alone and that the care team will be with them every step of the way.
5. Follow-Up:
   • Document the Conversation: Keep detailed notes of the discussion for continuity of care.
   • Plan for Regular Updates: Arrange follow-up meetings to revisit and adjust the plan as needed.
   • Provide Written Information: Offer written materials that can help reinforce the discussion.

Managing Pamela’s Symptoms if the Underlying Cause is Uncertain

1. Symptom Assessment:
   • Thorough History and Examination: Conduct a comprehensive assessment of Pamela’s symptoms, including onset, duration, severity, and any associated factors.
   • Use Symptom Scales: Employ validated symptom scales to quantify symptoms (e.g., Visual Analog Scale for pain, Edmonton Symptom Assessment System).
2. Empirical Symptom Management:
   • Pain:
     • Start with basic analgesics (e.g., paracetamol, NSAIDs) and escalate to opioids if needed.
     • Consider adjuvants like gabapentin or amitriptyline for neuropathic pain.
   • Nausea and Vomiting:
     • Use antiemetics like metoclopramide, ondansetron, or haloperidol based on the suspected cause.
   • Dyspnea:
     • Employ opioids for dyspnea management, along with other supportive measures like oxygen therapy if indicated.
   • Fatigue:
     • Address reversible causes (e.g., anemia, electrolyte imbalance) and provide general supportive measures, including rest and mild physical activity.
3. Non-Pharmacological Interventions:
   • Physical Therapy: Referral to a physiotherapist for mobility and strength exercises.
   • Occupational Therapy: Assistance with activities of daily living and adaptive equipment.
   • Psychological Support: Counseling or therapy to address emotional and psychological needs.
4. Monitoring and Reassessment:
   • Regular Follow-Up: Schedule frequent follow-ups to monitor the effectiveness of symptom management strategies and make adjustments as needed.
   • Patient and Family Feedback: Encourage Pamela and her family to report any changes in symptoms or new concerns promptly.
5. Collaboration and Referral:
   • Specialist Input: Seek input from palliative care specialists, oncologists, or other relevant specialists to help identify potential causes and management strategies.
   • Diagnostic Testing: If appropriate and in line with Pamela’s goals of care, consider targeted diagnostic tests to identify underlying causes of symptoms.
6. Holistic Approach:
   • Address Psychosocial Factors: Recognize and address any psychosocial factors that may be contributing to Pamela’s symptoms.
   • Spiritual Care: Provide access to spiritual care services if Pamela and her family find this supportive.

Identifying and managing the significantly ill patient
How would you discuss with Pamela and her family the most appropriate care and treatments should she become more unwell?
How might you discuss goals of care with Pamela and her family? Are there situations where Pamela would want to be assessed and treated in an emergency department, and others where she might not?
What signs or symptoms would suggest that you need to refer Pamela to a specialist inpatient palliative care service, such as a hospice or palliative care unit at a hospital?

Discussing Appropriate Care and Treatments as Pamela Becomes More Unwell

1. Preparation:
   • Understand Pamela’s Condition: Review her medical history, current condition, and prognosis.
   • Plan the Discussion: Choose a calm and private setting with enough time for a thorough conversation.
2. Communication Strategies:
   • Build Trust and Rapport: Start by expressing empathy and understanding for the difficult situation.
   • Clarify Understanding: Ask Pamela and her family about their understanding of her condition and what they expect as the illness progresses.
3. Content of the Discussion:
   • Explain Disease Progression: Clearly explain how Pamela’s condition might progress and what symptoms or changes to expect.
   • Discuss Care Options: Outline the different care options available, including home care, hospice care, and hospital-based palliative care.
   • Focus on Comfort and Quality of Life: Emphasize the goal of maintaining comfort and quality of life. Explain how each option aligns with this goal.
4. Advance Care Planning:
   • Review Advance Care Directives: Ensure that Pamela’s advance care directive is up-to-date and reflects her current wishes.
   • Substitute Decision-Maker: Confirm who will make decisions if Pamela is unable to do so and involve this person in discussions.

Discussing Goals of Care

1. Identify Goals and Priorities:
   • Ask Open-Ended Questions: Use questions like “What is most important to you as we plan your care?” or “What are your hopes and fears for the future?”
   • Explore Values and Preferences: Understand Pamela’s values, such as maintaining independence, avoiding pain, or being at home.
2. Emergency Department Situations:
   • When to Go to the ED: Discuss specific scenarios where ED treatment might be appropriate, such as severe, uncontrolled pain, acute shortness of breath, or new neurological symptoms.
   • When to Avoid the ED: Talk about situations where the ED might not be the best choice, like during the natural progression of the disease without acute distress, or when comfort measures at home are sufficient.

Signs or Symptoms Indicating Referral to Specialist Inpatient Palliative Care

1. Uncontrolled Symptoms:
   • Severe Pain: Pain that is not managed effectively with current treatment.
   • Severe Dyspnea: Persistent and distressing shortness of breath despite treatment.
   • Unmanageable Nausea and Vomiting: Symptoms that significantly impact quality of life and are not controlled with standard interventions.
2. Complex Care Needs:
   • Multiple Symptoms: When there are several severe symptoms that require intensive management.
   • Complicated Psychological or Social Issues: Issues that significantly affect Pamela’s well-being and are difficult to manage in the current setting.
3. Rapid Decline:
   • Functional Decline: Rapid deterioration in physical function, such as difficulty with basic activities of daily living.
   • Frequent Hospital Admissions: Multiple recent admissions to the hospital for symptom management or complications.
4. Support Needs:
   • Caregiver Burnout: When family or primary caregivers are overwhelmed and unable to provide necessary care at home.
   • Need for 24/7 Care: Situations where continuous monitoring and management are needed to ensure Pamela’s comfort and safety.

Conducting the Conversations

1. Explaining the Situation:
   • Use Clear Language: Explain the signs and symptoms that might indicate a need for more intensive care.
   • Provide Reassurance: Assure Pamela and her family that the goal is to provide the best possible care tailored to her needs.
2. Discussing Care Options:
   • Hospice Care: Explain what hospice care involves, focusing on comfort, dignity, and support for both Pamela and her family.
   • Palliative Care Unit: Discuss the benefits of specialized inpatient palliative care units, including expert symptom management and comprehensive support.
3. Involving the Family:
   • Address Concerns and Questions: Allow time for Pamela and her family to ask questions and express their concerns.
   • Collaborative Decision-Making: Involve them in decision-making, ensuring that Pamela’s values and wishes are central to the care plan.

Follow-Up

1. Regular Reviews:
   • Scheduled Appointments: Arrange regular follow-ups to monitor Pamela’s condition and adjust the care plan as needed.
   • Crisis Plan: Develop a crisis plan that outlines steps to take if Pamela’s condition changes suddenly.
2. Document Decisions:
   • Update Records: Ensure that all discussions, decisions, and advance care plans are documented in Pamela’s medical records.

Aspect	Inpatient Palliative Care	Home or Nursing Home Palliative Care
Medical Management
Pros	Access to specialized medical professionals (e.g., palliative care specialists). Comprehensive symptom management (pain, nausea, dyspnea). Availability of advanced medical equipment and treatments. 24/7 monitoring and immediate response to medical emergencies.	Familiar and comfortable environment. Potentially less exposure to hospital-acquired infections. Personalized care tailored to individual routines. Continuity of care with the same primary care team.
Cons	Institutional environment can be impersonal. Limited privacy and potential for noise. Risk of hospital-acquired infections. Possible feeling of disconnection from home and community.	Limited access to specialized medical care and equipment. Challenges in managing complex symptoms. Caregiver burden and potential for burnout. Possible delays in emergency response.
Psychosocial Support
Pros	Access to multidisciplinary support teams (social workers, psychologists, chaplains). Structured activities and support groups. Consistent psychosocial support. Opportunities for social interaction with other patients.	Greater sense of autonomy and control. Presence of family and friends. Ability to maintain personal routines and daily life. Emotional comfort of being in a familiar setting.
Cons	May feel isolated from family and home environment. Potential for emotional distress due to hospital setting. Limited freedom in daily activities. Possible lack of personalized attention due to staff ratios.	Possible lack of immediate access to professional psychosocial support. Increased burden on family members for emotional and social support. Potential for isolation if living alone. Lack of structured support activities.
Holistic Care
Pros	Comprehensive care plans involving multiple disciplines. Integration of spiritual care and cultural practices. Holistic approach to patient well-being. Structured environment for holistic care delivery.	Ability to incorporate personal beliefs and cultural practices into daily care. Holistic care that includes home environment and family dynamics. Personalized and adaptable care routines. Potential for greater alignment with patient’s personal goals and values.
Cons	May not fully reflect patient’s personal and cultural preferences. Limited flexibility in care routines. Institutional limitations on personalized holistic practices. Potential for standardized care approaches.	Variability in the availability of holistic care resources. Challenges in coordinating multidisciplinary care. Family caregivers may lack training in holistic care. Potential inconsistency in care quality.
Overall Quality of Life
Pros	Consistent medical support ensuring stable health status. Structured environment conducive to managing severe symptoms. Regular assessments and adjustments to care plans. Access to comprehensive support services.	Enhanced emotional well-being from being in a familiar environment. Ability to maintain personal relationships and social roles. Greater sense of dignity and autonomy. Flexibility to adapt care to daily needs and preferences.
Cons	Institutional setting may impact emotional well-being. Potential for feelings of loss of control and independence. Limited opportunities for personalized lifestyle choices. Possible emotional distress from being away from home.	Potential for gaps in medical and emergency care. Increased burden on family members and caregivers. Variability in quality and consistency of care. Challenges in managing complex medical needs at home.