ST MARGARET OF SCOTLAND HOSPICE

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

What does the term “Palliative Care” mean?

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

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.

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

Sources of Information (McIlfatrick et al., 2013)

http://www. scie. org. uk/socialcaretv/video-player. asp http://www.scie.org.uk/socialcaretv/video-player.asp?v=palliative-care-or-end-of-life-care

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

Transitioning to a Palliative Care Approach

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

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

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

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

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

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

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

Tracy’s Story