Annette Edwards Consultant in Palliative Medicine

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1 Annette Edwards Consultant in Palliative Medicine

2 Learning about core palliative care principles from the experience of managing patients with Motor Neurone Disease Dr Annette Edwards Consultant in Palliative Medicine

3 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

4 Palliative Care Principles provides relief from pain and other distressing symptoms affirms life and regards dying as a normal process intends neither to hasten or postpone death integrates the psychological and spiritual aspects of patient care offers a support system to help patients live as actively as possible until death offers a support system to help the family cope during the patients illness and in their own bereavement

5 Palliative Care Principles uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated will enhance quality of life, and may also positively influence the course of illness 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.

6 Palliative Care Principles Symptom relief Prognosis Life prolonging interventions Holistic care Support to patients and their families Multidisciplinary approach

7 Specific issues Symptoms: Weakness Muscle cramps Pain / Spasticity Speech / swallowing problems Breathlessness Drooling Interventions: Non invasive ventilation Artificial feeding eg PEGs

8 Specific issues Cognitive and communication problems: Frontotemporal dementia Psychological support needs patients/carers Difficulties expressing choices importance of identifying early Longer term care needs Issues around mental capacity, consent, advance care planning including advanced decisions for refusal of treatment, treatment withdrawal End of life care

9 Prognosis Progressive incurable disease, but prognosis variable Uncertainty Different forms / classification Only proven interventions to prolong life: Riluzole Non-invasive ventilation

10 Professor Stephen Hawking has defied statistics by living with motor neurone disease for 35 years

11 Riluzole Miller RG, Mitchell JD, Lyon M, Moore DH. Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). Cochrane Database of Systematic Reviews 2007, Issue 1 4 randomised controlled trials 974 riluzole treated patients and 503 placebo treated Prob prolongs tracheostomy-free survival by 2-3 months Inhibits glutamate release Side effects liver and bone marrow toxicity, dizziness, vertigo, occ nausea, lethargy, rash Usual dose 50 mg bd

12 Symptoms of patients with cancer and motor neurone disease (on hospice admission) Symptom pw MND cancer Constipation 65% 48% Pain Cough Insomnia Breathlessness O Brien et al 1998

13 SALEEM, T., R.N. LEIGH and I.J. HIGGINSON. Symptom prevalence among people affected by advanced and progressive neurological conditions - a systematic review. Journal of Palliative Care, 2007, 23(4), pp symptom present 50% symptom present 50% symptom present 80% Present but without reported prevalence P

14 Pain / spasticity Musculoskeletal pain and skin pressure pain Muscle cramps and fasciculations Muscle contractures/ spasticity Multidisciplinary approach - physio, OT Drugs: Other Simple analgesics Oral Antispasmodics - baclofen, dantrolene, tizanidine Painful spasms - gabapentin Intrathecal baclofen or phenol, Intramuscular botulinum TENS Surgery

15 Oro-pharyngeal secretions Saliva produced by submandibular, sublingual and parotid glands - parasympathetic NS. In MND, often normal quantity saliva, but muscle weakness - Peri-oral soreness - Speech/swallowing problems - Psychological effects

16 Saliva management Thick secretions: Hydration Dietary modification Suction Papase / fruit juices Carbocysteine Drooling thin secretions: Positioning Swallowing prompts Suction Anticholinergic drugs: hyoscine, amitriptyline, glycopyrrolate, atropine Other interventions botulinum toxin injections radiotherapy, surgery

17 Respiratory issues Cough Weak resp muscles Infections Saliva Aspiration? Acid reflux Breathlessness Atelectasis Infection, aspiration Sleep hypoventilation, hypercapnia Exertional dyspnoea often masked by immobility

18 Respiratory issues: Assessment Respiratory function tests:? Diagnosis and 3/12ly? Symptomatic? Patient s wishes Consider and treat other causes of respiratory symptoms Symptoms of hypoventilation poor sleep, somnolence, morning headaches

19 Screening for Sleep Disordered Breathing: Early referral to sleep service. Overnight Oximetry Easy to use. Widely available. Needs to be downloaded. Characteristic patterns in nocturnal hypoventilation.

20 Oximetry showing Nocturnal hypoventilation: 100% 90% Saturation 80% 70% 60% Pulse 50%

21 Respiratory: Management Positioning Physiotherapy Opioids for breathlessness Amitriptyline for secretions / sleep Careful use benzodiazepines?? Oxygen -CO2 retention, mouth dryness Nocturnal hypoventilation consider noninvasive ventilation

22 Non Invasive Ventilation Improves sleep, daytime fatigue, headache, cognition Improves QOL but high burden of care for caregivers (Kaub-Wittemer D et al, JPSM 2003) improves survival (Bourke et al, Lancet 2006) Recent survey 2012 shows marked increase in number patients referred for and receiving NIV cp 2000 (2.6 and 3.4 fold) O Neill et al Management of cough, sialorrhoea Problems with tolerability Advance Care Planning

23 Mask types Nasal pillows Nasal mask Full face mask

24 Tracheostomy Ventilation Non invasive ventilation

Team approach dietician, SALT PEG or RIG Discuss wishes

25 Dysphagia: Dehydration/malnutrition Difficulties with medication Aspiration pneumonia Patient and carer strain Team approach dietician, SALT PEG or RIG Discuss wishes early Morbidity increases with worsening respiratory function

26 Psychological and cognitive Multiple losses low mood Emotional lability - pathological laughing / crying -? frontal lobe damage Fronto-temporal dementia approx 5% 20-40% more subtle cognitive involvement

27 Carers needs Family carers provide most home-based care Carers needs: Information Training eg handling, physical care Respite Psychological support Access to trained paid-for carer O Brien et al 2012, Disabil Rehabil Caregivers perceived lack of support by health and social care services not valuing caregivers experiences, not feeling sufficiently involved in planning care Peters et al 2012, Amyotroph Lateral Sclerosis

28 End of life Care: What are the issues?

29 Challenges Symptoms: Physical Psychological / spiritual / social Complex interventions Communication / Ethical issues / decision making Balance of benefits and burdens Person s right to refuse life prolonging treatment

30 Challenges Access to services: Primary care Specialist palliative care Social services Place of care: choice co-ordination Family / Carer support Bereavement care

31 Carers needs Interviews with bereaved family carers Five themes: Work of carers Change in relationship from spouse to family care Family caring as series of losses Coping mechanisms of carers Supportive and palliative care experiences NB 6 participants prolonged grief disorder accessed pall care at later stage in disease trajectory Aoun et al, 2012 Palliat Med NB Significant anxiety, distress and carer burden in final stages Whitehead et al 2012, Palliat Med

32 Terminal Phase Most patients die peacefully, mainly in sleep Very rare to choke to death May be relatively sudden deterioration Increasing hypercapnoea slip into coma Most common symptoms in last 24 hrs dyspnoea, coughing, anxiety, restlessness Good communication patient / family / professionals Be proactive full assessment of needs - preferred place of care / death - anticipatory medications

33 Discontinuation of ventilation Prevention of unwanted ventilation early open discussion Delivery of optimal palliative care by caring team Recognition of patient s right to withdraw consent to invasive medical procedure NB difficult if using 24 hrs / day. Rare for patient to be capable of removing mask Morphine / midazolam infusion close supervision Patients become unconscious from hypercapnia

34 Ethical issues Communication When to initiate discussion re patients wishes??early cognitively intact, physically able, avoid crisis?later establish rapport, link with symptoms Decision making Fully informed consent balance of benefits and burdens Advance Care Planning PPC Advance Decision for Refusal of Treatment Enduring power of attorney etc Documentation

20/11/2013. Dr. Sinead Maguire Neurology Registrar 22 nd November 2013

20/11/2013. Dr. Sinead Maguire Neurology Registrar 22 nd November 2013 Dr. Sinead Maguire Neurology Registrar 22 nd November 2013 The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and psychological,