Kate Grundy and Wayne Naylor
March 2011
Format
 Palliative Care in 2011
 International trends
 Illness trajectories
 NZ perspective
 Palliative Care Council of NZ (PCC)
 Audience participation/ feedback
Eventually, everyone dies…
 1967, Cecily Saunders opened St Christopher's Hospice
 Much has been learned since about caring for cancer
patients at the end of life
 Palliative 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 awareness
 There is still a lack of public openness of death
 May have negative consequences for quality of care at
the end of life
 Fear of the process of dying
 Lack of knowledge about how to request and access
services
 Lack of openness between close family members
 Isolation of the bereaved
 Virtually all public commentary about dying is around
PAS/euthanasia or horror stories about poor care
High professional profile
 Treatment and care towards the end of life: good
practice in decision making (GMC 2010)
 Early PC for metastatic lung cancer - NEJM 2010
 NZMA 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 BMJ
 Joined up thinking – May 2009
 Spotlight on PC (2010) – sponsored by British Heart Fdn
 BMJ Supportive and Palliative Care - new peer reviewed
journal to be launched in April 2011
International Trends
 Advance Care Planning
 Growing momentum in NZ….
 End of Life Care
 New “buzz word” – emotive but clear
 Profile 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 Opportunity
T E Quest et al, Annals of Emergency Medicine, Vol 54, No 1, July 09
US figures for patients >65
 20% 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 care
 EOL care is an important public obligation
 Approx 80% of deaths have a dying process that
occurs over a few weeks to many months
 Only 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 PC
 Chronic condition management requires timely
transition to palliative and end of life care
 Examples are COPD, CCF and Diabetes
 Simply observing gradual deterioration is not good
enough
 Preferences for EOLC cannot be predicted as reliably as
for acute care
 Access 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 Planning
 UK, 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 orders
 Significant financial, practical, ethical and medico-
legal implications
Palliative Care in NZ
 Major developments in recent years
 More services, particularly in acute Hospitals
 More PM trainees (targeted MOH funding from 2009)
 Palliative Care Council of New Zealand (PCC)
 Palliative Care Advisor in the MOH
 NZ definition in Feb 2007
 Role of the Specialist (medical, nursing, allied health)
formalised to include support & education
 Acknowledges that most PC is provided by “Generalists”
 HNZ standards being developed that will be applicable
to all health care settings
Primary Care
 Palliative Care is part of your core business
 NOT just cancer
 Family centred
 Utilises the resources of the community
 Multi-disciplinary
 Good integration and communication is paramount
 Liaison with secondary services
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JOINED UP THINKING, Nigel Hawkes, BMJ 2009
 Liaison with Specialist Palliative Care/Hospice for direct
advice and support as well as education
Rural context
 Teamwork is critical
 Doctors
 Nurses (including Nurse Practitioners)
 Community Pharmacists
 Wider community resources
 Rural Hospitals
 Vital resource for PC
 Primary/secondary interface
 Hospital 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-focussed
 Ask – it might just be possible!
 Massive fluctuations in work load
 Bursts of great activity and pressure
 Tiring but rewarding
 Resistance to “interference”
 Clear about goals of care
 Requires shared identification and articulation of the issues
 Honest and deliberate communication (gentle)
Referral to PC Services
 Difficult pain
 Poorly opioid sensitive
 Difficult dyspnoea
 Fear of suffocation
 Bowel obstruction
 Agitated delirium
 Patient/ family distress
 Requests for sedation and
euthanasia….
Difficult cases….
 Physical issues
 Ethical issues
 Complex social situations
 Existential/ spiritual distress
 Family distress
 Team conflict
 “Fresh eyes”
One brief example…..
Palliative Care for COPD
 20% deaths in the UK are due to lung disease
 Lung cancer, pneumonia and COPD
 By 2020, COPD will be 3rd leading cause of death globally
 Palliative care readily available for pts with lung cancer
 Survival figures for conditions such as severe COPD and
Fibrosing Alveolitis are as poor as for lung cancer
 2 yrs after an acute exacerbation - 49% mortality
 5 yr survival with severe COPD - 30% men, 24% women
 Communication 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 questions
 Rated 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 approach
 In 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 needed
 Aim to progressively integrate supportive care
 Palliative care provision for progressive COPD needs to
begin before dyspnoea becomes intractable
 Identify a “trigger” – be proactive
Positive outcomes Rocker et al 2007
 Informed decision-making
 Resuscitation and other EOL issues
 NIV for acute exacerbations rather than ICU
 Improved self management
 Planned approach to dyspnoea (action plan)
 Community support
 Crisis intervention in the home
 Palliation at home for trial period
 Increased GP involvement
Challenges…..
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 status
 Progressive weight loss (>10% over past 6 months)
 Two or more unplanned admissions in past 6 months
 Pt 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
Q2
Q3
Q4
Could this patient be in the last days of life?
Was this patient’s condition expected to deteriorate in
this way?
Is further life-prolonging treatment inappropriate?
Have potentially reversible causes of deterioration been
excluded?
If the diagnosis of dying is in doubt, give treatment and review
within 24 hours
If 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”
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Hope that the patient may get better
No definitive prognosis
Lure of unrealistic or futile interventions
Disagreement amongst clinicians
Failure to recognise key signs
Lack of knowledge about prescribing
Poor communication skills
Fear of hastening death
Concerns about resuscitation
Cultural/spiritual/medicolegal issues Ellershaw and Ward, BMJ 2003
Tools for spiritual well being
 Excellent communication
 Relationships of trust
 Understanding and empathy
 Affirmation of feelings
 Keeping promises
 Maintaining hope
 Hope implies a sense of connection
 Hope shifts with changing realities
 A 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 thoughts
 Preparing patients and families for what lies ahead can
be extremely worthwhile and rewarding
 Invest in understanding the role of ACP
 MoH document soon to be released which clarifies
definitions and the medico-legal framework in NZ
 The relationship with your local specialist palliative
care service is worth fostering!
 Remember….
 Palliative care is as much about living well as dying well
Articles
 Joined up thinking, Nigel Hawkes: BMJ Vol 338, May 23, 2009,
 Early Palliative Care for Patients with Metastatic Non-Small-Cell
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Lung Cancer, Temel et al, NEJM 363;8, Aug 19, 2010
Dying matters: let’s talk about it: Jane Seymour et al, BMJ2010;
341:c4860
Recognising and managing key transitions in end of life care:
Kirsty Boyd and Scott Murray, BMJ2010, 341:c4863
Living 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
Resources
 Treatment and care toward the end of life; good practice in decision
making
 General Medical Council, July 2010
 Clinical practice guidelines for communicating prognosis and end of
life issues with adults….
 MJA 2007; 186(12 Suppl): S77-S108
http://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/aboutuspcc
 David Wilson (Rural GP rep) – davidwilson.mbmc@gmail.com
 Ron Mueck Exhibition - Christchurch Art Gallery Jan 2011