#DPLS15
older people with frail
Dr Kirsty Boyd, Consultant in Palliative Medicine, Edinburgh Royal Infirmary Patricia Brooks Young, Lead Nurse Palliative Care, NHS Lothian
Identification, communication and care planning with people whose health is
deteriorating
#DPLS15
1. How can we identify patients with deteriorating
health, limited reversibility and at risk of dying?
2. How can we have good conversations with these people and those close to them about their current and future care plans?
3. How can we make this work in our busy acute hospitals?
Background •Most people have a hospital admission in the last year of life.
– About 21% die within 6 months, 25% by 9 months, and 30% by 12 months
•Uncertainty abounds
– Which patients will die and how and when?
– What do people want now and in the future, and how do we find out?
– What matters more - treatment of diseases or quality of life?
•50% of health care expenditure occurs in the last 6 months of life, but are we making good decisions with patients & families about choosing wisely?
•If we don’t identify people at risk and talk sensitively and effectively with them about what is happening and ‘what matters’ we cannot improve.
Clark et al. Palliative Medicine 2014; doi: 10.1177/0269216314526443
#DPLS15
How can we identify people whose health is deteriorating such that they are at risk of
deteriorating further and dying?
Multi-morbidity ‘Living well’ with long term conditions
Deteriorating Health
Deteriorating & ‘dying well’
Time
Best Supportive Care & Palliative Care
Barnett K, Mercer S, Norbury M et al. Lancet 2012;380:37-43.
65% aged 65+ >80% aged 85+
It could be another year or two or a week or two…..who knows
Supportive & Palliative Care Indicators Tool
•Consensus-based & evidence informed guidance •Key general indicators of deteriorating physical/ mental health •Clinical indicators of major advanced conditions
– Cancer – Dementia/ frailty – Organ failure – heart, lung, kidney, liver – Neurological conditions
•Accessible language, content and layout •Supports identification in all settings •Prompts assessment and care planning in parallel with optimal management of reversible conditions
Patients with advanced conditions, deteriorating health and a ‘risk’ of dying need to be identified
www.spict.org.uk
Does SPICT help us identify patients at risk? YES Acute hospital
• 29% mortality at 6 months • Median SPARRA risk score – 65% • Multimorbidity – 80% +
www.spict.org.uk
Patients with advanced conditions, deteriorating health and a ‘risk’ of dying benefit from assessment and planning
#DPLS15
“I was worried I was going to be put on the Liverpool dying pathway… I'm glad to be feeling better and don’t want to think more about the future right now” Patient
“they have to tell you like it is...I don’t want to live like I died a while ago” Patient
“these are not the kind of discussions for when you’re really not well” Patient
She [ doctor] hedged around… it took a while til’ I saw what she was
getting at and put her out of her misery…Patient
Every time I'm asked I have to go through and relive it over again..
Carer
Talking about dying is challenging
Living well’ with multi-morbidity
‘Hoping
Coping
Not ‘planning for dying’
Patient: “I’ve never broached the subject cause I think like I’d rather be positive. I think “I’m not going to get worse.” (Female, 66: Liver failure, diabetes, IHD)
Carer: ‘We deal with everything just as it is happening, just day to day stuff and things. We just manage.’ (Carer for male, 87: renal failure, diverticular disease, mild dementia, prostate cancer,)
“I am quite happy to just float along as we are doing now.“ (Female, 89: epilepsy, atrial fibrillation, hypertension, severe aortic stenosis)
Patient: ‘I’m not afraid to die but I want to live’ (Female, 79: stage IV heart failure, renal failure)
Mason B et al. BMJ Supportive Palliative Care 2014;0:1–6. doi:10.1136/bmjspcare-2013-000639
#DPLS15
What helps your team have good discussions with people, and those close to them, about
deteriorating health, treatment & care options and future care planning?
#DPLS15
Communication & care planning with people whose health is deteriorating
What do you know?
What are you
expecting?
What’s happening?
What matters?
What could we do?
Future Care Planning
Plan the discussion • Key people • Urgency • Capacity • Readiness
Choose the plan • Advance care planning • Anticipatory care planning • Last days of life care planning
Effective & supportive conversations
• Generalisation • Sometimes people want to choose a family member or a close friend to make
decisions for them if they get less well in the future. Have you thought about that?
• Hypothetical questions • If you were less well again like this in the future what do you think we should do?
• Hope linked with concern • We hope the (treatment) will help, but I am worried that at some stage, maybe
even soon, you will not get better…. What do you think?
• Accept uncertainty, change and diverse views. Focus on goals. • Can we talk about what is most important for you now, and then how we might
cope with not knowing exactly what will happen and when?
• Choose your words wisely • euphemisms or long, vague explanations confuse people • talking about ‘trying’ or ‘the chances’ if a treatment will not work , have a very
poor outcome or not help meet the person’s goals is unhelpful • move on from older terms people may think means ‘nothing will be done for them
’ eg. ‘futile’, ‘ treatment limitation’ or ’ceiling of treatment’
ACCESS
RECONCILE with patient
status, needs & priorities
SHARE
On Admission to Hospital
ACP Information from KIS, GP letter, previous clinical records
During Hospital Stay
Key information fields in; clinical records,
structured ward rounds, MDT meeting notes.
Deteriorating Patient Change Package
Discharge from Hospital
Key information fields included in the immediate discharge
letter
In Primary Care
Key information from hospital episode
used to update or create KIS
Change/Deterioration
Review & informed care in home setting
Out of Hours : KIS accessed
Informed discussions Informed decisions Informed care
Information Reconciliation
KIS Accessed? Useful info?
Used to inform care?
Observations of practice Interviews: pts, families
Reflection: clinician Clinical audit:
retrospective deaths, prospective 6 &12mths
Content of IDL
The story so far…….
Clinician time to access information: escalation plan, CPR status, patient & family discussions • At base-line: < 5 min = 36% 5-10 min = 42% > 10 min = 22% • With AnCP Plan: 100% info found within 30 seconds
Pilot areas
BUT ….does increased frequency of discussions correlate with improved experience for patient,
families & clinicians? Bristowe,K, Carey,I Hopper,A et al. Patient & Carer Experiences of Clinical Uncertainty and Deterioration, in the Face of Limited Reversibility: A
Comparative Observational Study of the AMBER Care Bundle Palliative Medicine 2015 Mar 31. 1-11
Fritz,Z Fuld, J (2014) The Universal Form of Treatment Options (UFTO) As An Alternative to Do Not Attempt Cardiopulmonary Resuscitation Orders: A Mixed Methods Evaluation of the Effects on Clinical Practice & Patient Care PLoS ONE 8 (9) e70977
#DPLS15
Dr Kirsty Boyd, Consultant in Palliative Medicine, Royal Infirmary of Edinburgh
Consultant in Palliative Medicine, NHS Lothian Honorary Clinical Senior Lecturer
The University of Edinburgh [email protected]
Patricia Brooks Young, Lead Nurse Palliative Care NHS Lothian Lecturer/ Clinical Researcher Edinburgh Napier University