module 2 | Activity 7: Introducing specialist palliative care

As people progress along their illness trajectory they can require input from specialist palliative care services. Specialist palliative care services work directly with people affected by life-limiting illness and in partnership with other care providers to coordinate and deliver care.[1] There is no single agreed set of criteria for referral to specialist palliative care. Referral is based on the person’s characteristics including age, diagnosis, and limited life-expectancy as well as individual needs and symptoms.

Triggers for referral to specialist palliative care include:[2-8]

• Complex pain and symptoms related to their illness
• Recurrent presentations to hospital
• Progressive illness despite life prolonging therapy
• Withdrawal, or consideration of withdrawal, of prolonging treatment (e.g. hemodialysis, ventilation)
• Concern about end-of-life issues
• Recent marked decline in physical function that requires specialist input
• Care needs exceed health professional scope and carer capacity.

Specialist palliative care teams provide advice, support and interventions to manage complex and persistent needs including:[3, 9]

• Symptoms
• Psychological concerns
• Social and or spiritual distress
• Ethical dilemmas
• Family issues.

Guidelines presented in the PREPARED framework provide useful principles to facilitate communication about palliative care. Additional recommendations to prepare people during this transitional time include:[9-16]

• Providing a private environment, with adequate time for a full discussion
• Delivering information openly and honestly about changes in illness, treatment efficacy and, where requested, prognosis
• Eliciting the person’s concerns and goals before discussing specific clinical decisions
• Providing reassurance, where possible, when concerns have been discussed
• Introducing palliative care workers early
• Incorporating all health professionals involved in the person’s care as a team
• Exploring the person’s understanding of palliative care
• Emphasising the role of palliative care throughout the illness
• Explicitly stating that optimal care will continue and that the person will not be abandoned
• Asking open questions, including:
  • “What concerns you most about your illness?”
  • “As you consider the future, what is most important to you?”
  • “Is faith (religion, spirituality) important to you in this illness?”
  • “Would you like to explore religious matters with someone?”
  • What is your sense of how you are doing now?
  • What do you understand about what the future holds?
  • What have you been told about your illness and what to expect?
  • How worried are you about your illness? What is most worrying?

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Case study

Consider these points in relation to Michelle.

Michelle attends a follow-up appointment with Dr Meredith North, her medical oncologist. She has completed her radiotherapy and has commenced palliative chemotherapy. She is exhausted and looks unwell.

She is symptomatic with breathlessness and expresses her concern about this. Meredith assesses her breathlessness and develops a management plan with Michelle and Pete. As part of this plan, she introduces the concept of palliative care.