Kate Grundy and Wayne Naylor March 2011. Format Palliative Care in 2011 International trends Illness...
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Transcript of Kate Grundy and Wayne Naylor March 2011. Format Palliative Care in 2011 International trends Illness...
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
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…..
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) – [email protected] Mueck Exhibition - Christchurch Art Gallery Jan 2011