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Family-centred palliative care in rural NZ


Kate Grundy and Wayne Naylor March 2011 How could a GP practice /organisation formalise, demonstrate and promote a commitment to palliative care for their community? – PowerPoint PPT presentation

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Title: Family-centred palliative care in rural NZ

Family-centred palliative care in rural NZ
  • Kate Grundy and Wayne Naylor
  • March 2011

  • 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
  • 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
  • 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
  • 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
  • Long-term conditions shift to community-based
  • PC beyond cancer - most wanted topic poled by
  • 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
US figures for patients gt65
  • 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
  • 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 patients 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
  • 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
  • Returning patients to their community is often
  • 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
  • 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
  • Communication is often sub-optimal (EOL
  • Palliative care support is less
    available Partridge et al 2009
  • NZ (2007) 4000 respiratory deaths (60 not

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
  • 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
  • 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

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 (gt10 over past 6 months)
  • Two or more unplanned admissions in past 6 months
  • Pt in HLC or requires significant care at home

  • 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 lt15ml/min, conservative
    treatment on basis of c0-morbidities, new
    life-limiting condition such as cancer etc)
  • Respiratory disease (severe obstruction, LT
    Oxygen therapy, SOB at rest, low BMI, repeated
    admissions etc)
  • Liver disease (alb lt25, ascites, HCC)
  • Cancer (poor performance status, persistent
  • 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
  • Q2 Was this patients condition expected to
    deteriorate in this way?
  • Q3 Is further life-prolonging treatment
  • Q4 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..

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Question One
  • What would your ideal palliative care system look

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

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

Question four
  • 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

  • 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 3638, Aug 19, 2010
  • Dying matters lets talk about it Jane Seymour
    et al, BMJ2010 341c4860
  • Recognising and managing key transitions in end
    of life care Kirsty Boyd and Scott Murray,
    BMJ2010, 341c4863
  • Living and dying with severe COPD
    multi-perspective longitudinal qualitative study
    Pinnock et al, BMJ2011 342d142
  • Whither general practice palliative care G
    Mitchell, Australian family Physician Vol 35 No
    10. October 2006

  • 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//
  • The Gold Standards Framework (UK)
  • http//
  • PCC - http//
  • David Wilson (Rural GP rep) davidwilson.mbmc_at_gma
  • Ron Mueck Exhibition - Christchurch Art Gallery
    Jan 2011

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