Kate Grundy and Wayne NaylorMarch 2011

FormatPalliative Care in 2011

International trendsIllness trajectoriesNZ perspective

Palliative Care Council of NZ (PCC)Audience participation/ feedback

Eventually, everyone dies…1967, Cecily Saunders opened St Christopher's

HospiceMuch has been learned since about caring for

cancer patients at the end of lifePalliative care is a medical success story

These lessons have been inadequately appreciated by doctors treating patients dying from causes other than cancer

Early recognition of those patients with advancing illness who would benefit from supportive and palliative care is the key to good management“Would I be surprised if this pt died within the next

year?”

Public awarenessThere is still a lack of public openness of deathMay have negative consequences for quality of

care at the end of lifeFear of the process of dyingLack of knowledge about how to request and access

servicesLack of openness between close family membersIsolation of the bereaved

Virtually all public commentary about dying is around PAS/euthanasia or horror stories about poor care

High professional profileTreatment and care towards the end of life: good

practice in decision making (GMC 2010)Early PC for metastatic lung cancer - NEJM 2010NZMA Medspeak –2010

“End of life care – what do our patients really want?”Long-term conditions – shift to community-based care

“PC beyond cancer” - most wanted topic poled by BMJJoined up thinking – May 2009Spotlight on PC (2010) – sponsored by British Heart

FdnBMJ Supportive and Palliative Care - new peer

reviewed journal to be launched in April 2011

International TrendsAdvance Care Planning

Growing momentum in NZ….End of Life Care

New “buzz word” – emotive but clearProfile of quality end of life care is low Not just the remit of Specialist Palliative

Care -puts the onus on everyone to think about their own practice and their own services

Essential component of health service planning

Hospice and Palliative Medicine; New Subspecialty, New OpportunityT E Quest et al, Annals of Emergency Medicine, Vol 54, No 1, July 09

US figures for patients >6520% will die young due to an illness with a

relatively short final decline (weeks to months) – typical of many cancers

25% will die by a slow decline, punctuated by dramatic exacerbations with a high chance of “sudden” death – typical of COPD, CCF

40% have a very poor long term functional status with slow decline (dementia, younger patients with MND and stroke)

Improving EOL careEOL care is an important public obligationApprox 80% of deaths have a dying process

that occurs over a few weeks to many monthsOnly 20% occur suddenly/unexpectedly

More assistance is needed to support “aging in place” and “dying in place”

More assistance is needed to prevent carer fatigue and burnout

Researching a Best Practice EOLC Model for Canada

WILSON et al, Canadian J of Aging, 2008

Transition to PCChronic condition management requires timely

transition to palliative and end of life careExamples are COPD, CCF and Diabetes

Simply observing gradual deterioration is not good enoughPreferences for EOLC cannot be predicted as

reliably as for acute careAccess to palliative care services may not always

be possible or necessary but some degree of palliative care need will be universal…..

Structuring services appropriately is challenging

Advance Care PlanningUK, Australia and US

Interest and expertise in NZ (ACP c0-operative)A process of ascertaining patient’s goals,

values and preferences…Specific decisions or directives can be made

Advance care plans/advance directives and EPA

DNACPR ordersSignificant financial, practical, ethical and

medico-legal implications

Palliative Care in NZMajor developments in recent years

More services, particularly in acute HospitalsMore PM trainees (targeted MOH funding from 2009)Palliative Care Council of New Zealand (PCC)Palliative Care Advisor in the MOH

NZ definition in Feb 2007Role of the Specialist (medical, nursing, allied health)

formalised to include support & educationAcknowledges that most PC is provided by “Generalists”

HNZ standards being developed that will be applicable to all health care settings

Primary CarePalliative Care is part of your core business

NOT just cancerFamily centredUtilises the resources of the communityMulti-disciplinary

Good integration and communication is paramountLiaison with secondary services

JOINED UP THINKING, Nigel Hawkes, BMJ 2009Liaison with Specialist Palliative Care/Hospice for

direct advice and support as well as education

Rural contextTeamwork is critical

DoctorsNurses (including Nurse Practitioners)Community PharmacistsWider community resources

Rural HospitalsVital resource for PC

Primary/secondary interfaceHospital PC teams need to identify links/processes/allies

Returning patients to their community is often vital

Even when they are unstable/deteriorating

Challenges and Opportunities“Family matters”

Patient and family-focussedAsk – it might just be possible!

Massive fluctuations in work loadBursts of great activity and pressureTiring but rewardingResistance to “interference”

Clear about goals of careRequires shared identification and articulation of the

issuesHonest and deliberate communication (gentle)

Referral to PC ServicesDifficult pain

Poorly opioid sensitive

Difficult dyspnoeaFear of suffocation

Bowel obstructionAgitated deliriumPatient/ family distressRequests for sedation

and euthanasia….

Difficult cases….Physical issuesEthical issuesComplex social situationsExistential/ spiritual

distressFamily distressTeam conflict“Fresh eyes”

Palliative Care for COPD20% deaths in the UK are due to lung disease

Lung cancer, pneumonia and COPDBy 2020, COPD will be 3rd leading cause of death globally

Palliative care readily available for pts with lung cancerSurvival figures for conditions such as severe COPD and

Fibrosing Alveolitis are as poor as for lung cancer2 yrs after an acute exacerbation - 49% mortality5 yr survival with severe COPD - 30% men, 24% womenCommunication is often sub-optimal (EOL decisions)Palliative care support is less available Partridge et al 2009

NZ (2007) –4000 respiratory deaths (60% not cancer)

Patient questionnaire Gardiner et al 2009

Rated well on listening and answering questionsRated poorly on discussing prognosis, what

dying might be like and spiritual/religious issues (i.e. advance care planning)Many patients seemed unaware they could die of

their chest condition and none had discussed this with a HP

Those who mentioned death were concerned about how they would die and were fearful of dying of breathlessness and of “suffocating”

Fearful of a distressing and protracted death

Considering palliative approachIn contrast to other long term conditions, COPD

is perceived by pts and families as a “way of life”Story of their illness has no clear beginning

(indistinguishable from their life story) and an unpredictable and unanticipated end

Rather than looking for a clear transition point, holistic assessments are neededAim to progressively integrate supportive care

Palliative care provision for progressive COPD needs to begin before dyspnoea becomes intractableIdentify a “trigger” – be proactive

Positive outcomes Rocker et al 2007

Informed decision-makingResuscitation and other EOL issuesNIV for acute exacerbations rather than

ICUImproved self management

Planned approach to dyspnoea (action plan)Community support

Crisis intervention in the homePalliation at home for trial periodIncreased GP involvement

Managing transitions

Would my pt benefit from PC?Ask

Does the patient have an advanced long term condition, a new diagnosis of a progressive life limiting illness or both?

Would you be surprised…….?Look for one or more general indicators

Poor performance statusProgressive weight loss (>10% over past 6 months)Two or more unplanned admissions in past 6

monthsPt in HLC or requires significant care at home

Also…Look for two or more disease-related indicators

Heart disease (SOB at rest, renal impairment, cardiac cachexia, NYHA class 1v heart failure, two or more admission for IV therapy in past 6 months etc)

Kidney disease (eGFR <15ml/min, conservative treatment on basis of c0-morbidities, new life-limiting condition such as cancer etc) airway

Respiratory disease (severe obstruction, LT Oxygen therapy, SOB at rest, low BMI, repeated admissions etc)

Liver disease (alb <25, ascites, HCC)Cancer (poor performance status, persistent

symptoms)Also for neurological disease and dementia

Is my patient dying?Clinical indicators for terminal care

Q1 Could this patient be in the last days of life?Q2 Was this patient’s condition expected to

deteriorate in this way?Q3 Is further life-prolonging treatment

inappropriate?Q4 Have potentially reversible causes of

deterioration been excluded?

If the diagnosis of dying is in doubt, give treatment and review within 24 hoursIf the answer to all four questions is “Yes”, plan care for a dying patient

Both tools taken from: Boyd and Murray, BMJ 2010

Barriers to “diagnosing dying”Hope that the patient may get betterNo definitive prognosisLure of unrealistic or futile interventionsDisagreement amongst cliniciansFailure to recognise key signsLack of knowledge about prescribingPoor communication skills Fear of hastening deathConcerns about resuscitationCultural/spiritual/medicolegal issues Ellershaw and

Ward, BMJ 2003

Tools for spiritual well beingExcellent communicationRelationships of trustUnderstanding and empathyAffirmation of feelingsKeeping promisesMaintaining hope

Hope implies a sense of connectionHope shifts with changing realitiesA new focus of hope can energize patients even

in the last days of life…..

What would your ideal palliative care system look like?

What do you require from you local palliative care service/team?

In your opinion, what are the main priorities for the Palliative Care Council?

How could a GP practice /organisation formalise, demonstrate and promote a commitment to palliative care for their community?

Concluding thoughtsPreparing patients and families for what lies

ahead can be extremely worthwhile and rewarding

Invest in understanding the role of ACPMoH document soon to be released which clarifies

definitions and the medico-legal framework in NZThe relationship with your local specialist

palliative care service is worth fostering!Remember….

Palliative care is as much about living well as dying well

ArticlesJoined up thinking, Nigel Hawkes: BMJ Vol 338, May 23,

2009, Early Palliative Care for Patients with Metastatic Non-Small-

Cell Lung Cancer, Temel et al, NEJM 363;8, Aug 19, 2010Dying matters: let’s talk about it: Jane Seymour et al,

BMJ2010; 341:c4860Recognising and managing key transitions in end of life

care: Kirsty Boyd and Scott Murray, BMJ2010, 341:c4863Living and dying with severe COPD: multi-perspective

longitudinal qualitative study: Pinnock et al, BMJ2011; 342:d142

Whither general practice palliative care: G Mitchell, Australian family Physician Vol 35; No 10. October 2006

ResourcesTreatment and care toward the end of life; good practice

in decision makingGeneral Medical Council, July 2010

Clinical practice guidelines for communicating prognosis and end of life issues with adults….MJA 2007; 186(12 Suppl): S77-S108http://www.mja.com.au/public/issues/186_12_180607/cla11246_fm.html

The Gold Standards Framework (UK)http://www.goldstandardsframework.nhs.uk/GSFInPrimary+Care

PCC - http://www.cancercontrolnz.govt.nz/aboutuspccDavid Wilson (Rural GP rep) – davidwilson.mbmc@gmail.comRon Mueck Exhibition - Christchurch Art Gallery Jan 2011