Jennifer Philip

In chronic disease, an acute deterioration is predictable

Given predictable, do we plan for it?

Identification of those at risk of acute deterioration, and death?

How may we respond?

2 in 3 Deaths occurred among people aged 75 or over.

3 in 10 Deaths were due to cardiovascular disease in 2011 (leading underlying cause)

4 in 5 Deaths due to natural causes nvolved more than one disease.

AIHW

Chronic illness

Period of disability / care

Multiple diagnoses

Often will have elderly partners, family separated –geographically andsocially

Likely die in hospital

In the ‘big picture’ the acute deterioration should not be a surprise.

If understand context and prognosis, anticipate and plan for the acute deterioration, how we respond.

So how well do we and our families plan for our final phase of life?

Proxies – for planning, Achievement of things deemed important at the end of

life

Knowledge of illness, prognosis

Place of death

Perhaps palliative care as proxy for planning

Pain & symptom management

Preparation for death

Sense of completion

Decisions about treatment preferences

Being treated as a whole person

Steinhauser 2000

Symptoms?

1016 patients COPD

116 died enrolment hospitalisation, further 300 next 12 months

25% serious pain throughout last 6 months

2/3 serious dyspnoea

SUPPORT study 2000

1/3 O2 depdt pts discuss EOL issues with Dr.

14/19 pts with severe COPD wanted more information including about prognosis.

82% UK GPs feel should discuss prognosis, but occur 41%.

Despite family members feeling discussion of prognosis and ACP important, none had done so until death admission

Curtis 2005, Jones 2004, Elkington 2001 , Philip 2014

Dr. understood preferences: 86% who wanted CPR 46% who did not want

CPR

Of 1288 did not tell Dr CPR wishes during admission 30% told dr in next 2

months 50% of those who wished

no CPR did not tell Dr. Declining QOL was not a

prompt for discussion.

Majority of people (56-84%) consistently say would like to die in their own home if possible.

Beccaro 2006, Gomes 2012, Thomas 2004

Actual place of death at home or usual residence:

33-46% (Europe)

27% (Canada)

Approx 26% (Australia)

den Block 2014, Burge 2003, Rosenwax 2007, Philip 2012

Anticipation of future events and planning responses

Exploration of goals

Discussion around preferences

Match care to goals

Achievement of tasks enhances QOL

Support for families

Established benefit of PC Improved symptom relief

Improved psychological status

Improved carer psychological status

Reduced hospitalisation, ED presentations, LOS and death in acute hospital system

Improved survival

Improved well being and survival of surviving spouses.

Higginson 2009, Temel 2010, Hudson 2011, Christakis 1998, Philip 2013, Temel 2013, Rosenwax 2006

Low levels of PC engagement with chronic nonmalignant disease WA: 2/3 (68%) of people who died of cancer received

SPC, cf. < 1/10 (8%) non-cancer .

Limited role specialist palliative care services

If occurs, frequently in the last few days of life.

Rosenwax 2006, Philip 2012

Don’t think about it

Not identified as reaching the final stage of life (Yohannes 2007)

Focus on maximising therapy and function

Acute focus

No clinical ownership of whole illness

Patients don’t or perceived as don’t want it Patients do not see palliative care as relevant, although

do want tasks of PC

Clinicians fearful of raising possibility of palliative care

Burden of communication tasks.

- But is the Palliative care model ‘right’ even if patient willing?

Philip 2012, Le 2014

Best palliation may be disease directed therapies which may be best delivered in an acute hospital Eg. IV diuretic infusions +/- inotropes in

decompensated CCF, NIV in COAD

Community-based care providers can feel disempowered Lack of clear role / task for service

Uncertainty of prognosis and trajectory

Links with acute services continue.

Philip 2013

Long term high levels of morbidity of non-malignant disease Length and intensity of involvement stretches resource

capabilities

PC services based upon admission until death service model (modeled on cancer illness trajectory)

Resourcing issues

In UK: secondary analysis data from the Regional Study of the Care of the Dying

1/3 (243/720) of cancer patients referred to specialist palliative care scored > median on 3 symptom measures Suggesting severe problems with significant needs

Addington-Hall 2008

269/1605 non-cancer patients (16.8%) fulfilled these criteria.

Therefore: estimated that 71, 744 people dying from non malignant disease in England and Wales each year may require specialist palliative care A 79% increase in caseload

Conservative given matched to 1/3rd of cancer referrals

Addington-Hall 2008

Palliative care fellow/physician attends 3 non-malignant clinics each week:

Renal

Respiratory

Cardiology

Patients with non-malignant disease have a high symptom and psychological burden

Patients with non-malignant disease frequently do not access palliative care services for a number of reasons which may include: Prognostic difficulty – raises resources issues for PC services

Frequently best palliated by acute care interventions eg. diuretics, antibiotics.

These patients have long standing relationships with their treating physicians and look to these doctors for care.

These patients may view palliative care as end of life only, and therefore of little relevance to their own situation. Want the components of PC, without the label

Philip, Gold, Brand et al. Negotiating hope with COAD patients: a qualitative study of patients and health professionals. Intern Med J. 2012 Jul;42(7):816-22

Enables appropriate acute hospital response for exacerbations/decompensation

Resource possible

Enables triage to usual palliative care services when appropriate and without ‘surprises’. eg.

Community services when no longer being ‘held’ in clinic

In-patient palliative care

Ensure disease specific therapies are optimised.

Assess/ consider approaches to symptom management.

Screen/respond to physical, psychological and spiritual concerns.

Screen community support.

Link community or IP PC services as necessary

Institute and document discussions around future care: patient’s goals, preferences and appropriate medical care that matches these goals.

Identify patients according to perceived prognosis

Identify according to ‘surprise’ question.

Identify patients according to need/symptomatology

Clinical variables: Poor prognostic factors include: comorbid illnesses, severity of illness (APACHE II score), low serum albumin, low haemoglobin.

Physician discomfort around prognostication Service use data:

Admission, NIV, LOS in past 12 months.

Lynn, Harrell 1997, Fox 1999, Christakis,2008

“Would you be surprised if this patient died in the next 6 – 12 months?" Joanne Lynn

"safer space" - acknowledge the possibility of death, but without impugning a physician's intentions or competence. (Johnson 2003)

If answer is no, what things would you have in place for them? What things might be important to consider?

Screening for symptoms

PC-NAT (2008)

Screening for distress (thermometer)

Require consideration and engagement with task

Step outside usual practice approaches in medicine

Identification based upon making the diagnosis of “Refractory” symptoms

‘Refractory breathlessness’ is …..

‘chronic breathlessness at rest or on minimal exertion, which persists despite the maximal therapy of any underlying conditions that might cause or worsen the symptom’

Wiseman, 2013

Positive diagnosis of ‘refractory’

Opportunity:

symptom relief through direct prescribing for the subjective experience of the symptom itself.

Also a prompt to consider other things that might be important.

1.“Would you be surprised if this patient died in the next ……?”

2. Hospitalisation history

3. Diagnosis of ‘refractory’ symptoms ie symptoms that require attention in and of themselves. Prompt reconsideration of approach

Comprehensive Anticipatory Care Clinic ---Palliative approach +/- specialist palliative care

Bill 64 yo man, long term smoker, now ceased

Lives with wife, adult children live nearby suburbs

Long standing COPD First hospitalised when 59 – ICU admission Subsequent hospitalisations on 4 occasions, required

NIV at least once. Maximised COPD medications Not eligible for lung transplant or lung reduction

surgery Some LOW, able to walk around house, slowly go to

local shop. No oxygen

During previous admissions discussions held about resuscitation, Bill had voiced “I want everything done”.

Underwent pulmonary rehabilitation – found helpful but now no further goals.

Seeing respiratory OP team 6/12ly

Referred to Comprehensive Anticipatory Care Clinic PC doctor.

very dyspnoeic minimal exertion

A little suspicious – ‘don’t they want to see me any more?’

Symptoms: overwhelming dyspnoea, poor sleep, low energy, intermittent pain, anxiety and probably underlying depression

Brief discussion of past treatments and thoughts – Bill curtailed.

Agreed to trial low dose morphine for dyspnoea -interested in thinking about symptom based approaches.

Significant reassurance re morphine (LMO & pharmacist)

Good response to opioids, using 1-3 x / day, changed to long acting.

a bit more engaged, been out a couple of times

Broached more discussion re. perception of illness, perception of treatment, what is important to him.

Initial ‘just want to get better’, ‘want everything done’ but gently probed what means by this.

Quite good understanding of illness, its likelihood of eventually being fatal, and wants treatment if likely to help, but very clear about what sort of life/disability was unacceptable.

Important conversation

Revisited in 2/52 and encouraged, and did bring 2 adult children and wife to that appointment.

More in depth discussion: development of goals - to remain home as long as possible

and medical treatment to attempt to prolong life if that was likely outcome.

Parallel discussion that if not possible would have all comfort measures.

Next 6 months: seen approx 6/52ly, started antidepressant revisited his goals from time to time – he raised on 1 occasion,

Dr on another

About 7 months after discussion

Admitted with exacerbation – NIV for 24 hours

Improved but described very difficult

Discharged after 4 days – family event determined to go home for

Readmitted 5 days later further/ongoing exacerbation – very dyspnoeic, some distress

Trial NIV brief – ceased after few hours did not tolerate

Began morphine SC and low dose midazolam – calm

Died following day

Relationship and trust established around symptom control

Not about stopping treatment, but tailoring and setting up the parameters and limits

Establishing goals and matching medical care to those goals was substantial communication task Took persistence, skills

Over a period of more than 1 encounter

Family involvement important

Patient benefits Value discussions Attention to symptoms and psychological symptoms Enhanced support

Family caregiver benefits Enhanced support and reduced unmet information needs

Health care professional benefits facilitates response upon acute hospital admission Mutual learnings between disciplines

System benefits Direct admission to PCU for selected patients Reduced resource load for community palliative care services

Community based palliative care

HARP based models

GP case conferencing with PC service

Need to be culturally appropriate

Need appropriate communication skills to facilitate these discussions.

• Not all patients with advanced illness need PC input

• However, common elements of the palliative approach apply for those with advanced disease• Anticipation and planning• Maintaining maximal treatment options• Symptom assessment management• Advanced care planning• Psychosocial & carers• Bereavement

• A model: whole illness approach, plans for future, enables care to match patient goals, facilitates HCP response in event of clinical change.

• Comprehensive Anticipatory Care (embedded PC) one such model Day/Month/Year

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