module 1 | Activity 8: Understanding people’s needs

The goal of palliative care is to relieve the suffering of people affected by life-limiting illness through the comprehensive assessment and treatment of the physical, psychosocial and spiritual symptoms.[1] Symptoms often follow a predictable pattern as the person progresses along their illness trajectory. Each person will experience these symptoms differently and will have different preferences for treatment and management.[2]

Needs assessment tools assist in determining the support required and management responses. They can also elicit an understanding of the person’s preferences and priorities for care planning purposes. Needs assessments help determine the level of palliative care that a person requires at the current point in their illness trajectory.[2-3]

Key assessment tools:

• Needs Assessment Tool: Progressive Disease (NAT-PD): Assists in matching the types and levels of need experienced by people with progressive chronic diseases (eg, cancer, heart failure, COPD) and their caregivers with the most appropriate people or services to address those needs.
• Australia-modified Karnofsky performance scale (AKPS): Used to assess performance state and prognosis in advanced illnesses.
• Pain Rating Scales: categorical or verbal descriptor scales, numbered scales, visual analogue scales and faces pain scales.
• Symptom review – Symptom Assessment Scale (SAS): The standard symptom assessment tool used in Australian palliative care services. Assesses seven core symptoms.
• Carer Support Needs Assessment Tool (CSNAT): The CSNAT is an evidence-based tool that facilitates tailored support for family members and friends (carers) of adults with life-limiting illnesses. The research underpinning this tool was informed by carers and practitioners.

The person with a life-limiting illness, their family and carers should be actively involved in the initial and ongoing assessment of needs.[2] This person-centred assessment focuses on holistic needs including:[4-8]

• Management of physical symptoms such as pain, weakness, fatigue and dyspnoea
• Management of psychological symptoms
• Need for social support
• Culturally specific needs related to language requirements and information disclosure preferences
• Need for information about treatment, diagnosis or prognosis
• Spiritual and existential concerns including hope, loss of meaning and uncertainty
• Financial concerns such as loss of income and medical costs
• Legal concerns such as preferences for end-of-life care and advance care directives.

These needs change over time and reassessment is required.[2] For further information refer to Module 3 – Assessing and managing symptoms.

 

The Waiting Room Revolution project aims to improve the patient and family experience of serious illness, providing the resource Seven Keys: for navigating a life changing diagnosis. This can help people to be prepared and hopeful.

Case study

Consider William and how his needs have changed throughout his illness.

It has been one year since William’s colonoscopy showed he had stage III colorectal cancer, indicating regional lymph node involvement. Over the past year, he had a colon resection and six months of adjuvant chemotherapy. He has been seeing his GP every two months and has been attending the outpatient colorectal clinic every six months for follow up.

On his 12-month follow up, liver metastases were found. His cancer is now considered stage IV colorectal cancer. Palliative chemotherapy is available in some situations to control such advanced illness. However, William has worsening liver function and is physically too unwell to tolerate chemotherapy.

The surgeon has indicated to William that his prognosis is poor. William and his wife Gladys are seeing his GP to discuss what the oncologist from the colorectal clinic has recommended.

For further information about Colorectal cancer, access the Clinical practice guidelines for the prevention, early detection and management of colorectal cancer.