Grundy - New Zealand Rural General Practice Network
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Transcript Grundy - New Zealand Rural General Practice Network
Kate Grundy and Wayne Naylor
March 2011
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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
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”
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
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) – [email protected]
Ron Mueck Exhibition - Christchurch Art Gallery Jan 2011