Quality of Life

He aha te mea nui o te ao – he tangata, he tangata, he tangata

What is most important in this world – it is people, it is people, it is people.

The primary goal of palliative care is to optimise the quality of life for patients and their families. There are many views on the nature of quality of life but one enduring view by Calman in 1984 (see ‘Journal Articles’) is that quality of life ‘can be defined as subjective well-being reflecting differences or gaps between hopes and expectations and current experiences.’

The aim of care near the end-of-life is to:

• provide ‘appropriate’ palliative care
• provide and maintain improvement in patients’ quality of life
• achieve a ‘good death’ as defined by the patient and whānau-family. This is as varied as there are cultures and individuals

A challenge exists in that health professionals and patients often have different views on what aspects of disease and treatment are important. Hence it is always important that the patient and whānau-family voice is clearly heard, clarified and documented. There are many ‘expert-derived’ tools available such as:

• McGill Quality of Life questionnaire
• Schedule for the Evaluation of Individual Quality of Life (SEIQoL)
• Missoula-VITAS quality of life index – encompasses a number of domains and is user-friendly (npcrc.org/files/news/missoula_vitas_quality_of_life_index.pdf). It contains questions about:
  • symptoms – the level of physical discomfort and distress
  • function – perceived ability to perform accustomed functions and activities of daily living and the emotional response, experienced in relation to expectations
  • interpersonal aspects – degree of investment in personal relationships and the perceived quality of one’s relations/interactions with family and friends
  • well-being – the individual’s internal condition i.e. a sense of wellness or unease, contentment or lack of contentment
  • transcendent – degree of connection with an enduring construct, and of a meaning and purpose

It has also been suggested that there are a number of “milestones” to be reached near the end-of-life that are helpful for practitioners and patients alike to recognise including:

• a sense of completion of worldly affairs, of relationships with the community and family and friends
• a sense of meaning about our own life and life in general
• an experience of love of self and others
• an acceptance of the finality of life – of one’s existence
• a sense of a new self (personhood) beyond personal loss
• a surrender to the transcendent, to the unknown – letting go

Again, this list of “milestones” must be prioritised by an individual’s world view and culture. We can never presume anything, but rather engage in genuine enquiry and enablement.