The Importance of Palliative Care in Dementia

Transcription

1 The Importance of Palliative Care in Dementia Dr Siobhán Kennelly Connolly Hospital

2 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, 2013)

3 Dementia Epidemic (Cahill & O Shea, 2012) 35 million worldwide 7 million Western Europe Ireland approx. 41,470 currently (many never diagnosed) estd prev of 140,000

4 Dementia is important because of the profound effect that it can have on the people who develop it and on those close to them; because it is common and because of the high demands it places on health and social care resources (Nuffield Council of Bioethics, 2009)

5 Palliative Care and Dementia A palliative approach to dementia care involves supporting both the person with dementia and their family. It seeks to address and relieve the pain, distress and discomfort associated with advancing dementia and invites the person and family to participate in making decisions about future care needs and where it is best delivered. Palliative dementia care actively treats distressing symptoms (physical or psychological or emotional), to optimise the quality of life for the person with dementia, and their family, knowing that he underlying cause cannot be cured (ACH, Australia, 2009)

6 The aspirational aim will always be to maintain personhood and to enable the person to live well. When, then, it comes to dying, the aim should be for death to occur with dignity, without suffering or distress; it having never been hastened or postponed in-keeping with the principles of palliative care (Hughes, 2013)

7

8

9 Causes of Dementia

10

11 Traditional view of dementia timeline and progression- now recognised to be significantly more complex

12 Specific challenges that the Person with Dementia faces in accessing palliative care Dementia seldom recognised as a progressive/terminal illness (Ouldred and Bryant, 2008) Draper (2008) Progression varies 2 15 years( Lloyd-Williams 1996) Small number of people with dementia referred to Specialist Palliative Care and people with dementia are less likely to be referred to palliative services despite having similar symptoms at end of life as patients with cancer (Carole 2010, Sampson et al 2006) People with dementia receive less pain relief (Jordan & Carole 2009, Davies & Higginson 2004, Lynne et al 1997)

13 Younger People with Dementia For the younger individuals with dementia and their family members, the disease occurs off time, not in their older years, as most often expected, but in the prime of their lives (Harris & Keady, 2009)

14 Illness Trajectories

15 Co-morbidities and Dementia (Pobladour, 2014)

16 Irish National Audit on Dementia (2014)- Dementia in acute hospitals 8% (51/660)died while in hospital 6% were receiving EOLC or managed on a pathway 9% referred to specialist palliative care services (over half of whom died while in hospital) One referral for family bereavement

17 The acute hospital journey of the person with dementia- Principal admission diagnosis and outcomes (Sampson, 2009) MMSE Pneumonia UTI Acute Cardiac Sx Death on index admission People with Dementia were > 3 times more likely to die during their hospitalisation than similar people without cognitive decline.

18 Survival post treatment for Pneumonia in advanced dementia patients in NH Arch Intern Med July 12; 170(13): Mitchell et al

19 Prevalence of Behavioural and Psychological Symptoms in dementia population in acute hospital (Sampson, 2014) Symptom Prevalence Paranoia 11% Hallucinations 14% Activity Disturbance 43% Aggressive 56% Sleep Disturbance 42% Affect 33% 53% classed as severely troubling on Behave-AD

20

21 Common pain syndromes in elderly MUSCULOSKELETAL CONDITIONS OA Degenerative disc disease Osteoporosis Gout RHEUMATOLOGIC CONDITIONS: RA Polymyalgia rheumatics Fibromyalgia NEUROPATHIC CONDITIONS: Diabetic neuropathy Postherpatic neuralgia Trigeminal neuralgia Central poststroke pain Radicular pain secondary to degenerative discs

22 In the frail older person with dementia.other sources of pain.and possibly less recognised Positioning Pressure Areas / Decubitus Poor Dentition e.g. Toothache / Gingivitis Pain related to instrumentation e.g. Catheter/ Cannulation Painful skin rashes Abdominal Pain (AD patient who s not eating!) Painful Infections e.g. Candidiasis/ Cellulitis

23 Pain in nursing home patients 30% reported daily pain 26% of these patients received no analgesia Only 26% of them received strong opioids What predicted inadequate pain management? 1 Advanced age: >85 years old 2 Poor cognitive function 3 Minority status Bernabei (1998)

24 Consequences of pain in people with dementia Impaired mobility & ability to self care Decreased socialisation Anxiety Sleep disturbances Impaired appetite and memory Depression Weight loss Agitation Resistant behaviour n.b. personal care! Aggression Calling out Delirium PINCH ME

25 Pain in those with dementia Often under recognised and under treated in those with cognitive impairment, communication problems and residents of long-term care Cognitive impairment is the strongest predictor not to self report pain >40% of NH residents are unable to report pain due to poor cognition Under-recognition of other morbidities that will give rise to pain; e.g. hip fracture pain in patients with AD notoriously under-recognised / undertreated.(poor rehab potential!!)

26 Dementia as a barrier to pain assessment Memory loss Personality changes Judgement Abstract thinking Language skills Symptoms attributed to dementia may be an indication of pain Aggressive behaviour Resistant behaviour

27 Severe pain: Opioids Moderate to severe: Use in combo with opioids Mild to Moderate pain: Acetominophen Aspirin NSAIDS

28 KH, 87 End Of Life scenario Advanced vascular dementia, CCF, immobile, full nursing care General decline noted in recent weeks Unable to take meds, decreased po intake Unable to engage / communicate in setting of dementia EOLC discussion with family (2 daughters, 1 son) Son pressing for ED transfer, sisters do not

29 Challenges in the Provision of End Of Life Care in the Nursing Home Communication Competence Clinical Complexity Expectations

30 Palliative Care Supporting Families The Journey through death and dying; Families Experiences of EOLC in Private Nursing Homes (Courtney & Duffy, June 2014, DCU; ) Retrospective interviews with bereaved families of residents in nursing homes Families identified the transition to the nursing home as the starting point for the End of Life care journey Transitions were fraught with guilt, dissimulation, uncertainty Difficulties faced by families around the process of dying Mostly contented with and appreciated the care received by their loved one

31 I always felt he thought I let him down. Which maybe he did but then we d always talk about things before we did them and we didn t talk about this. maybe he needed something extra I don t think if he d been in hospital that he d have struggled as he did. We were delighted that we had an option of leaving him where he was and to die kind of peacefully without pain and suffering and that s all we wanted.

32 Communication Who will initiate, drive, take ownership? Who should the discussion take place with? When should it take place and where How can be it documented to clearly and adequately reflect the discussion Differences of opinion on the right approach Often reflects challenges in clinical governance in general Nursing Home care

33 Competence Confidence around EOL decisions and dealing with uncertainty/ prognostication Recognising dying Dealing with symptom control- are there medications available / prescribed for comfort Do the staff know how to use these appropriately

34 Clinical Complexity Dementia Co-Morbid Illness Prescribing and rationalising medications Uncertainty Delirium

35 Pitfalls Need to do something about this for HIQA! The family won t agree Lack of background information.not ascertaining if there was a previous discussion or decision that might reflect person s wishes The DNAR Obsession No / poor follow-through Inadvertently denying people appropriate acute care!

36 Has to be more than DNAR or?transfer to hospital Establishing goals of care What is an acceptable / unacceptable quality of life for the individual based on current / previously expressed wishes E.g. if they could no longer eat or drink is a PEG tube acceptable The focus of the conversation is on reasonable outcomes and living well it should raise the issues of life-prolonging treatment generally and not focus on any specific treatment

37 National Examples of developing good practice E.g. St Vincent s Hospital, Athy Planning for the future project Introduction of Think Ahead Using Structured decision making e.g. POLST Shows that good EOLC in the NH can be done well on a systems-basis and with reasonable consistency Takes real leadership and culture change

38 Cure sometimes, treat often, comfort always (Hippocrates)