Define palliative

2. Learning outcomes Define palliative Differentiate between the terms palliative care, end of life care and terminal care Discuss what is meant by a palliative approach to care and the philosophy that underpins palliative care Explain the concept of ‘total suffering’ Outline the important aspects of individualised assessment

3. Excellent networking – increases collaborative care Sharing of issues Collective wisdom Improved outcomes for person, family, whānau and the health team Resources available for planning care and for after hours Know how and when to contact specialist palliative care services Advocate knowledgeably for the people you care for Benefits of combined education

4. What is palliative care? Palliative (derived from the Latin pallium – a cloak or cover) – implies a form of care that: • recognises that cure or long term control of disease is not possible • is concerned with quality rather than quantity of life • ‘cloaks’ troublesome and distressing symptoms with patient comfort being the primary aim of treatment

5. WHO definition of palliative care “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” WHO 2008

6. Palliative care • Palliative care is the active total care of people whose disease is not responsive to curative treatment, encompassing the patient and their family and whānau • Important definitions: • palliative • end of life care • last days of life • Palliative care recognises dying as a normal process and neither hastens nor postpones death • Palliative care approach should be an integral part of all clinical practice

7. Challenges we face in the care of people with palliative needs

8. Palliative care is about living as well as dying: “Put life in to their days, not just days in to their life” Palliative approach /primary palliative care – should be integral to all care for people with advanced disease Specialised palliative care – specialty teams available to offer advice about care Last days of life or ‘terminal care’ – last days of life What is a palliative approach?

9. Ageing of the aged • New Zealand’s population is ageing, with over 65 year olds expected to make up 25% of the population by the 2051 – this is in comparison to 12% in 2005 • There are 6 times as many old-old (85 years and over) • The 85+ group will also account for 6% of all New Zealanders in 2051 • These figures will have significant implications for care across all sectors – acute care, primary care and residential care

10. Needs of people with advanced illness • Early recognition of symptoms • Pain is often unrecognised and under treated due to lack of experience of health professionals • Dying phase can be protracted • Attitudes towards ageing and dying • Cognitive and communicative difficulties • Long held beliefs about medications • Beliefs about ‘good dying and good death’

11. Prolonged dwindling • The numbers of people living with serious chronic conditions will increase markedly in the next decade • These people are likely to lose the ability to care for themselves long before death • Intensive personal care during period of dependency, imposing substantial burdens on paid and unpaid (family) caregivers • Occasional episodes of acute illness OR gradual loss of ground and eventual death

12. Trajectories as described by Lynne 2003 Frailty and dementia Chronic illness Cancer diagnosis

13. Survival time/prognosis – the reality Source: Gott M et al (2007)

14. Medical technology will always triumph Someone must be accountable when someone dies Death can always be “peaceful” (the sanitised vision of dying) If we ignore the prospect of death then it won’t happen to us Grief is a medical condition that has a “cure” Misguided beliefs in our society

15. Truly listening to the wishes and requests of patients, families and whānau with respect to end of life care Diagnosing dying; essential if the correct decisions, conversations and treatments are to occur in a timely way would you be surprised if this person died in the next year? Facing their own mortality Issues facing health professionals

16. Total suffering Suffering is “experienced by persons, not merely by bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychologic entity” (Cassell,1982) Suffering may include pain but not limited to it and the relief of total suffering is an obligation of health professionals (Ferrel and Coyle, 2008) Importance of personal meaning of illness is critical

17. A model of total suffering Anne Morgan 2004

18. Taha wairua – Spiritual wellbeing is the capacity for faith and wider communication. The spiritual essence of a person is their life force. This determines us as individuals and as a collective, who and what we are, where we have come from and where we are going. This is about how we see ourselves in this universe, our interaction with and perception of others. Taha hinengaro – Emotional and mental well-being is the capacity to communicate, to think and to feel mind and body are inseparable. Thoughts, feelings and emotions are integral components of the body and soul. Taha whanau – Family/human relationships provide a capacity to belong, to care and to share where individuals are part of wider social systems. Whanau provide us with strength to be who we are. This is the link with our ancestors our ties with the past, the present and the future. Taha tinana – Physical well being has the capacity for physical growth and development. Our physical being supports our essence and shelters us from the external environment. For Maori the physical dimension is just one aspect of health and wellbeing and cannot be separated from the aspect of mind, spirit and family. Te Whare Tapa Whā Durie, Mason, The Whare Tapa Whā, Tirohanga Māori, Māori Health perspectives, Extracts from Chapter 5 of ‘Whaiora’

19. Know the person • “Who am I?” • “What is important to me?” • life history • map of life • genograms • Requires partnership with family/significant others

20. Physical impact of their illness • Body integrity • Body image • Physical function • What symptoms are they describing?

21. Psychological impact of their illness • Emotional responses; • anger, denial, disbelief • fear, guilt, sadness • turmoil, worry, anxiety, depression • What previous experiences have they had? • How are they making sense of what is happening to them? • How have they managed crises in their lives previously?

22. Cultural needs • Ask about the ethnic identity of the person • What is important to the person – values/beliefs? • How will they express their needs? Who will speak for them? • How do we best meet their identified needs? • The underlying philosophy of care, compassion, respect and honesty is universal • Must be mindful of the unique beliefs and rituals around death and dying across different communities • What is/isn’t appropriate when caring for them?

23. Intellectual needs Provision of information at the level requested by the person and the significant others: • how much do they want to know about their health issues? • in what form is the information best presented to them – meetings, brochures, web links? • who is the person who will advocate/speak for them?

24. Social impact • Loss of friends and community • Altered roles and relationships • Financial issues • Need to leave their home • Intimacy and sexuality

25. Spiritual needs • Discuss personal beliefs/values with the person • Spirituality • “A person’s unique search… for what is sacred in life, answers to life’s ultimate questions (such as meaning, purpose and direction in life) as well as a feeling of connectedness to others and the environment.” • Larson and Sawyers, 1997

26. Relief of my suffering • Do you know what this illness means to me? • Do you all know what I need? • Have my individual needs been met? • From this assessment a multidisciplinary care plan will be created in partnership with the person and their significant others

27. Interdisciplinary teams • Interdisciplinary care; • Keeps the person at the centre of care • Maximises remaining function • Adapts to changing needs of the patient • Listens to family and whānau • Provides holistic care • Keeps lines of communication open • Working together

28. The role of hope • Hope implies a sense of ongoing connection with the world • Reframe goals according to changing health status • New focus for hope can energise people during their last days of life • Such goals as saying goodbye, reminiscing about one’s life, communicating one’s wishes and achieving pain relief may be met

29. Dying • Dying is an important phase of life – individuals have the right to expect quality of life and dignity in death • The last days of life are unique for each person • Spirituality, serenity and peacefulness are very important • It is important that we know the persons wishes for their dying so we can get it right

30. Conclusion Palliative care is an integral part of all clinical care for the person with life limiting illness, their family and whanau “You matter because you are. You matter to the last moment of your life and we will do all we can to help you not only to die peacefully, but also to live until you die.” Dame Cecily Saunders