1. ST MARGARET OF SCOTLAND HOSPICE

2. Communicating what “Palliative Care” really means Kathryn Nattress Director of Clinical Services

4. What does the term “Palliative Care” mean?

5. WHO Definition of Palliative Care
Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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

6. Palliative Care:
is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

7. Public Awareness of Palliative Care
Italy – more than 40% had never heard of palliative care
Japan – 63% admitted no knowledge of palliative care
Australia – 33% only knew a little, 16% were not aware
Northern Ireland – 56% claimed to have low knowledge, 19% stated they had no understanding of the concept
Scotland – 49% reported some knowledge of palliative care

8. Sources of Information (McIlfatrick et al., 2013)

9. http://www. scie. org. uk/socialcaretv/video-player. asp

10. Impact of early integration of palliative care
Improved satisfaction with care
Less acute and futile interventions
Patients are more likely to die at home
Equitable access to service
Positive consequences for the dying and bereaved

11. Transitioning to a Palliative Care Approach

13. Do primary care teams identify patients for palliative care before they die (Harrison et al., 2012)
60% of patients who died from cancer were listed on the palliative care register
Only 20% who had died with other long-term conditions such as heart failure, dementia and COPD had been identified

14. Defining the Palliative Patient (Mitchell et al., 2012)
“those type of people”
“those needs”
“further on”
“have come to that stage”
“needing more input”

16. Experience of Uncertainty
Progressive Cancer
Hope of recovery alongside fears of dying
Preparing for an anticipated death at some time
Cardiac or Respiratory Disease
Coping with daily limitations or frustrations
Hoping not to get worse
Unpredictable acute exacerbations
Not thinking about dying until it happens
Liver Disease
All pervading and universally shared uncertainty
Dying unpredictably with acute complications

17. Neurological Conditions
Distress and uncertainty at diagnosis
Long and variable illness journey of progressive disability
Dying during an episode of worsening health
Severe Acute Brain Injury
Uncertain outcomes and death from complications
Prolonged, devastating disability and dying with another illness or stroke
Frailty
Unpredictable journey of not living a normal life nor imminently dying
Dying with an acute or gradual final illness
Multimorbidity
Being old rather than ill or dying and living day to day
Unpredictable patterns of declining health due to overlapping illness trajectories

18. Talking about the Future
Prognostic Paralysis
“Hoping for the best but planning just in case”

19. How to talk about future care
Assess the person’s understanding and awareness
Find out what the person is thinking about the future
Decide how urgently the person needs information about his or her deteriorating health

20. Clinical Indicators Performance status poor or deteriorating
Progressive weight loss > 10% over 6 months
Serum albumin < 25g/l
Two or more unplanned admissions in past 6 months
Multiple co-morbidities
Disease specific
Breathless or chest pain at rest or on minimal exertion, BMI < 21, EGFR < 15ml/min, unable to dress, walk or eat without assistance, swallowing difficulties

21. Tracy’s Story