GETTING STARTED WITH

OUTCOMES MEASURES

24 August 2017

Kirsty Robertson

Amanda Sommerfeldt

Denise van Aalst

What are “outcomes measures”?

• Data obtained from using valid and reliable tools

• Valid means that tools measure what they are supposed to

measure

• Are results credible? Can they be believed?

• Reliable means that findings can be repeated

• If data were collected again, you would get the same results

• Ways of measuring changes over time and whether

interventions are having an effect

• “The change in a patient’s current and future health status

that can be attributed to preceding healthcare”

- Donabedian

Outcomes measures are not:

• More busy-work or checkboxes for nurses and doctors

• Though it can feel that way sometimes!

• Big brother looking over your shoulder and constantly

scrutinizing the way you do your job

• But shouldn’t we be measuring what we do and using data to

improve our practice?

• Replacements for compassionate caring, supportive

presence, or excellent bedside nursing/medical care

• Those things are highly valued and always will be!

Why bother with outcomes measures?

• Make clinical care as good as it can be• Establish baselines and monitor changes in a systematic way

• Quickly communicate relevant information to other professionals (example: use of ECOG in oncology)

• Identify potential gaps and needs

• Evaluate the effects of interventions, care, or services

• Improve agency processes• Establish and improve practice standards

• Determine “best practice”

• Benchmark with other organisations

• Research and quality improvement initiatives

• Show value to people/agencies invested in the service

“Nations face numerous challenges in providing high-quality end-of-life care for their citizens, and an ageing population that has a prolonged trajectory of decline and substantial needs for care magnifies these challenges. As nations begin to address these challenges, it will be essential to determine whether their responses are effective.”

- Cassaret and colleagues (2006)

“The New Zealand Health Strategy:

Future Directions” (Dec 2016)• Emphasizes embedding outcomes measurement throughout the system

• Aim of “all New Zealanders achieving equitable health outcomes, and

targeting and tailoring services for those groups who have poorer health

and social outcomes than the population on average”

• “Outcomes are included as an integral part of commissioning and

performance management”

• 3 key directives in the “Roadmap of Actions”

1. Develop and implement a monitoring framework focused on

health outcomes

2. Streamline reporting and make the system transparent to the

public

3. Improve commissioning – expand service delivery models

• Right agency providing the right service at the right time

for the right person(s)

Revised Healthy Ageing Strategy (Dec 2016)

• 10 year action plan

• Palliative care is included in the “respectful end of life”

section

• Action 24b

• “Develop and agree national service expectations and an outcomes

framework for palliative care”

• To be led by MOH, with DHBs as key partners

• Importance of outcomes measures echoed in the recently

published “Review of Adult Palliative Care Services”

(March 2017)

Questions to consider

• Why do we do things the way we do them?• Are we as effective as possible?

• Are we as efficient as possible?

• Might there be opportunities to deliver better care?

• Are we making a difference for patients and families?• Is it possible to measure the “good” that we do (or think we do) for the

people we serve?

• When patient/family needs change, do we consistently recognize those changes and respond to them in an appropriate and timely fashion?

• Is the care necessary, appropriate, and equitable?

• When it comes to how we care for our patients, are we all speaking the same language?• Do we assess and document in a consistent way as a

hospice agency? At the regional and national levels?

What do we measure? How do we

measure it?• Many tools already in widespread use in Europe, Canada,

USA, and Australia

• As of Dec 2009, there were 528+ different palliative care

outcome assessment instruments in use throughout the

world

• “Measuring What Matters” document created by the

Palliative Care Council (2012)

• Talks about what to measure but not how to measure

• Hospice NZ Outcomes Symposium (2017)

• Primarily looked at two suites of tools: OACC (UK) and

PCOC (Australia)

• A few hospices are already using some tools

Consensus

• Begin implementing outcomes measurement at a clinical level

• Introduce measures in a stepwise fashion, rather than trying to use

multiple tools all at one time

• Goals are to benchmark practice and improve quality

• Instructions to hospices:

• Hospices that are able to do so, will begin to implement Phase of

Illness and Australia-modified Karnofsky Performance Status (AKPS),

regardless of other tools adopted.

• Those hospices who are ready, will begin to pilot the other outcomes

measures from the OACC or PCOC suites.

• Share, share, share. Hospices will share experience and

developments with outcomes measures, regionally and nationally.

• Hospices will trial outcomes measures that work across

hospices and aged residential care as part of their

innovation fund projects.

A LOOK AT THE TOOLSStarting with the following:

1) Phase of illness

2) AKPS

3) PPS

Phase of illnessPhase This is the current phase if… This phase ends when…

StablePatient’s problems and symptoms are

adequately controlled by established plan of

care and further interventions to maintain

symptom control and quality of life have been

planned and family/carer situation is

relatively stable and no new issues are

apparent

Needs of the patient and/or family/carer

increase, requiring changes to the existing

plan of care

UnstableUrgent change in plan of care or emergency

treatment is required because the patient

experiences a new problem that was not

anticipated in the existing plan of care and/or

the patient experiences a rapid increase in

the severity of a current problem and/or

family/carer circumstances change suddenly

impacting on patient care

New plan of care is in place, it has been

reviewed, and no further changes to the plan

of care are required. This does not

necessarily mean that the symptom/crisis has

fully resolved but there is a clear diagnosis

and plan of care (i.e. patient is stable or

deteriorating) and/or death is likely within

days (i.e. patient is now dying)

DeterioratingCare plan is addressing anticipated needs,

but requires periodic review because the

patient’s overall functional status is declining

and the patient experiences a gradual

worsening of existing problem(s) and/or the

patient experiences a new, but anticipated,

problem and/or the family/carer experiences

gradual worsening distress that impacts on

patient care

Patient condition plateaus (i.e. patient is now

stable) and/or urgent change in the care plan

or emergency treatment and/or family/carers

experience a sudden change in their situation

that impacts on patient care, and urgent

intervention is required (i.e. patient is now

unstable) or death is likely within days (i.e.

patient is now dying)

DyingDying: death is likely within days Patient dies or patient condition changes and

death is no longer likely within days (i.e.

patient is now stable and/or deteriorating)

DeceasedPatient dies; bereavement support provided

to family/carers is documented in the

deceased patient’s clinical record

Case is closed.

Phase of illness

• Stable• Plan of care is in place and working, current needs are met, and future

needs are appropriately anticipated

• Unstable• Urgent change in the plan of care is needed because of a new,

unanticipated problem, a current problem has rapidly worsened, and/or family/carer circumstances have suddenly changed in a way that impacts patient care

• 90% of patients are in the unstable phase for 3 days or less

• Deteriorating• Patient needs closer monitoring because functional status is declining,

problem(s) is/are worsening, a new but anticipated problem occurs, and/or family/carer distress is gradually worsening and impacting patient care

• Dying• Time for the end of life care plan

• Deceased

Australia-

modified

Karnofsky

Performance

Scale (AKPS)

PPS

When to document POI, AKPS, PPS

• POI, AKPS, and PPS

• At the first nursing assessment

• Need to clarify policy regarding when the initial assessment is done

after admission to hospice programme

• At discharge/death

• Daily in IPU

• Phase of illness with every community nursing contact –

telephone or visit

• Does not need to be done more than once if there are multiple

contacts in a given day, unless a change is noted

• AKPS, PPS whenever phase of illness changes and

with outpatient medical appointments

Where to document POI, AKPS, PPS

1. In “Palcare”, go to “Assessments” tab

2. Select “Palliative Assessments”

3. Scroll down and enter data into

1. “Palliative Performance Scale”

2. “Karnofsky Performance Scale”

3. “Phase” under “Details”

4. Consider completing ESAS for symptoms addressed and RUG –optional at this time

INSERT SCREEN SHOT, IDEALLY WITH ARROWS TO RELEVANT FIELDS

Examples

• John Smith is a 79 year old man with met NSCLC who lives with his wife in Te Anau. Dx 2 weeks ago when hospitalized with unresolved pneumonia and increasing back pain. He has metastatic disease to the spine, hips, liver, and brain. He has declined chemo or radiotherapy.

• You meet with them for an initial visit. John has DOE and some pain in his upper mid back. GP prescribed Sevredol 5-10 mg PO Q2 hours PRN but John hasn’t tried this yet. There are no smokers in the home and O2 sat is 94% on RA. Appetite is good. John has not been confused, nor has he had any seizures.

• John’s wife would like some caregiver education and they would like in-home carer support with bathing and dressing, ideally three times per week. John spends most of his time in the recliner, but he is able to walk with a stick in the house and out to the mailbox – no further. He can no longer get out to his shed to do woodworking or fish with his friends. No DN referral has been done. They have 1 son who lives in Sydney. No religious, spiritual, or cultural issues. No ACP but John would like to die at home.

Initial assessment

• Identified care plan issues:• Symptoms of pain and shortness of breath

• Seizure risk

• Constipation prevention

• Caregiver support

• Home safety and ADL support

• Advance care planning

• Establish contact frequency and complete initial assessments

• Liaise with GP and order PRN Laxsol, PRN midazolam in the event of seizure at home

• Referrals for hospice family support, district nursing, and in home carer support

Initial assessment

• Current phase of illness?

• Stable

• AKPS score?

• 60%

• PPS score?

• 60%

• Consider recording ESAS scores for pain, shortness of

breath, constipation

• Consider recording RUG

Oh, no! Things have changed…

• You come in to work one month later and learn that John’s wife called hospice overnight to report that John had a seizure. She gave him intranasal midazolam like you had taught her and John seemed to recover over the next 30-60 minutes.

• However, over the past 5 days, John has had increasing back pain and shortness of breath and now takes Sevredol 10 mg, 3-4 times per day. He has also been more constipated despite the laxsol 2 tabs PO BD. Last BM 4 days prior. He is more anxious with his breathing.

• He is now in bed 20 hours per day and needs a bedside commode and assist of 1 to transfer. He can only take a few steps.

• Appetite has declined and he eats 10-20% of meals. John chokes on pills at times.

• Wife still wants to keep John at home.

Updated assessment and care plan

• Updated plan of care• Liquid morphine 10 mg/ml instead of Sevredol for pain. Give 10 mg

(1ml) TDS regularly with 10-15 mg hourly PRN pain/dyspnoea. Wife not comfortable giving SC meds so none ordered.

• Regular midazolam spray TDS to prevent seizures and minimise anxiety with dyspnoea

• Increase DN and in home carer support. Son updated and plans to visit next week.

• Order bisacodyl suppositories for constipation

• Order equipment

• Update contact frequency

• Current phase of illness? • Deteriorating

• AKPS?• 30%

• PPS?• 40%

Disaster strikes

• Three days later, call from DN at 1500. Wife slipped in the

driveway and fractured her hip. She is being taken by

ambulance to Southland Hospital and there is no one to

care for John.

• Request for urgent respite admission to hospice IPU

• John not happy at the idea of leaving home, but doesn’t

see an alternative and is willing to come, even if it means

he dies in IPU

• No change in terms of function, symptoms in past 2 days

Updated assessment and care plan

• Updated plan of care

• Continue current medications. Orders for PRN SCs as he will now have around-the-clock nursing care

• Son called – can’t change his flight plans, but still planning to come early next week

• Admit to IPU for urgent respite. Goal is still to die at home but accepting of IPU if that is not feasible

• Finalize future care planning – NFR, no hospitalization, comfort care only, for cremation and funeral home selected

• Phase of illness?

• Unstable

• AKPS?

• 30%

• PPS?

• 40%

John in the IPU

• John is seen the next day in the IPU. Pain and shortness

of breath are managed. John increasingly needs

midazolam and haloperidol for restlessness. Family is

happy with the plan of care. However, John is now fully

bedbound and eating very little. He sleeps 22 hours per

day. Urine output is reduced.

• Phase of illness?

• Deteriorating

• AKPS?

• 20%

• PPS?

• 20%

John in the IPU

• Two days later, John is minimally responsive to touch and

no longer to take anything by mouth. He appears

peaceful.

• Son has arrived from Australia. Wife comes over from

rehab unit a few times per day to be with him.

• No plans to discharge from IPU

• Phase of illness?

• Dying – initiate Te Ara Whakapiri / EOL pathway

• AKPS?

• 10%

• PPS?

• 10%

John dies at 1015 on Day 7 in IPU

• Phase of illness?

• Deceased – initiate bereavement plan of care

• AKPS?

• 0%

• PPS?

• 0%

Summary

• Outcomes measures are important and necessary

• Eventually, how our hospice gets accredited and paid may hinge on

some of these measures

• We will ease into this together

• If you have questions or aren’t sure about how to score or

document, just talk to your colleagues, supervisor, and/or

the doctors

• We are all learning how to do this and no one is an expert… yet

• It is important that we record the information regularly and

that scores are assigned as consistently as possible

• Your AKPS 40% is the same as my AKPS 40%, etc.

• Official “start” date is 1 September 2017

References

1. Australian Government Dept of Health. “Palliative care outcomes collaboration: clinical manual”.

May 2017. Accessed online 17/8/17 at

https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/@pcoc/documents/doc/uow129133

.pdf

2. Hospice New Zealand. “Palliative care outcomes measures”. Power Point Presentation. May

2017.

3. Hospice New Zealand Palliative Care Outcomes Symposium. “Outcome measures for palliative

care in New Zealand”. 2017.

4. University of California – Davis. “Reliability and validity”. Accessed online 17/8/17 at

http://psc.dss.ucdavis.edu/sommerb/sommerdemo/intro/validity.htm

5. Victoria Hospice Society. “Palliative Performance Scale (PPSv2). Accessed online via Queens

University website 17/8/17 at http://www.collaborativecurriculum.ca/en/modules/PPS/PPS-

thepalliativeperformancescale-01.jsp