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Australian and New Zealand Burn Association Annual Scientific Meeting
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Wellington,
23 September 2009
Nga mihi mahana, ki a koutou katoa
Warm greetings to you all, especially to our colleagues from
Australia and further abroad.
It is an honour to open the Australian and New Zealand Burn
Association Annual Scientific Meeting.
I know that ANZBA is a multidisciplinary professional
association comprising surgeons, nurses and allied health
professionals involved in the management of burn injuries. Yours is
a small but highly specialised sector of the health care community.
Your conference theme, "The Burn Care Continuum", is fitting given
the multiple providers involved in burn care, and the distinct
phases of a burn patient's journey: resuscitation, acute
rehabilitation and long-term rehabilitation.
I salute all of you here today for choosing to research and
practise in such a challenging field. One of the great things about
conferences is the opportunity to refresh oneself, to get new
ideas, to reconnect with professional colleagues and meet new ones.
You have a rich menu of presentations over the next few days.
The role of HDC
In these brief opening remarks, I want to touch on some of the
key themes that I see in my work as Commissioner. But first, some
of you may be wondering, what does a Health and Disability
Commissioner do? I visited England a few years ago, and my friends'
8-year-old son asked me what my job meant. "Well", I said, "If the
doctor gives the patient the wrong medicine, the patient can
complain to me and I investigate what happened." Rohan didn't
seem very interested by my reply - but the next day, as we walked
through fields in a village outside Oxford, he turned to me and
said, "You know, Ron, your job won't do any good - it won't make
the patient feel better and it will only make the doctor feel sad."
Out of the mouths of babes.
When you work in the complaints business you try and convince
yourself that instead of just being the ambulance at the bottom of
the cliff, you might help build the fence at the top of the
cliff. Parliament said that the Health and Disability
Commissioner is supposed "to facilitate the fair, simple, speedy
and efficient resolution of complaints" about health care and
disability services.
Most complainants are well motivated and seek an explanation and
evidence of changes to stop the same thing happening to someone
else. A simple apology can go a long way to resolving the
complaint. But sometimes the parties dig their toes in - the
complainant insists on "accountability" and to wants to be proved
right on every little detail; and the provider contests even the
mildest criticism of their care. When all else fails, some
disgruntled parties vent their spleen on the Commissioner. We try
not to be deflected by skirmishes and sideshows.
As Commissioner, I have quite consciously sought to bring a
systems focus to my inquiry analysis - reflected in the motto
adopted by HDC, "Learning, not lynching, Resolution, not
retribution" (phrases that came to me one day in 2001 when I was
mowing the lawns).
Lessons from complaints
I was surprised to learn that HDC received a significant number
of complaints involving heat and chemical burns over the past 5
years. Many related to children and babies, and to elderly
residents of rest homes. The most common complaints involved
primary care providers who underestimated the seriousness of the
burn, which then deteriorated and required more active management.
We see odd cases like the man who suffered a chemical burn from a
nasal spray used to treat erectile dysfunction, and the woman burnt
after she sat on a public toilet seat covered with caustic
chemicals.
Complaints involving major burns seldom come to our attention,
but one from 2002 sticks in my mind. A man in his 20s sustained
severe injuries when the digger he was operating rolled over and
trapped him. One of the digger's hydraulic pipes burst, pouring hot
hydraulic fluid on him and burning him severely. He also fractured
his right shoulder blade. He was eventually freed by the New
Zealand Fire Service and airlifted to a provincial hospital, where
he was admitted to ICU. He needed to be transferred to a regional
centre for more specialised care. After transfer he ended up
waiting for hours in the regional hospital emergency department,
without pain relief or an adequate mattress. He was given only
perfunctory information and suffered a great deal of unnecessary
anxiety. My investigation faulted the system for inter-hospital
transfers, and the regional centre's pain management and provision
of information. We recommended a number of changes, which the
hospital implemented.
Usually, our formal report and a hospital's report on compliance
with recommendations is the end of the story. But in this case the
young man's mother sent me a lovely card, saying that her son was
fully recovered and back at work. She wrote:
"Thank you for your report regarding my complaint. I
wholeheartedly appreciate all the work that you put into your
report. … We are grateful for your 'recommended actions', enabling
less stress on future patients and Whanau."
Not many cases end like that, but when we manage to achieve
resolution and learning, it's especially gratifying.
So, what have I learnt as Commissioner? Three lessons: quality
matters; information matters; and patient engagement matters.
Quality
First, patients want to receive appropriate, high
quality care. Improving the quality and safety of health
care has never received as much attention amongst clinicians,
health policymakers, the media and the public as in the past decade
- since publication of the Institute of Medicine report, 'To Err is
Human', in 1999. Your conference programme has a lot of sessions
reporting on advances in burn care and the availability of new
technologies. This a fast-moving field, and you will hear from
leading local and international experts over the next three
days.
I encourage you to continue to audit your processes and outcomes
of care, to compare results with other units, and to publish your
findings. As John Greenwood of the Royal Adelaide Hospital Burns
Unit said in a paper on "Development of Patient Pathways for the
Surgical Management of Brain Injury" (ANZJ Surg 2006; 76:
805-11), such publications help "stimulate discussion within the
burns fraternity that will lead to research into ... thorny areas,
perhaps even unearth unpublished studies which might mandate
reappraisal and redesign of the pathways". Writing in
Lancet in 2003, James Frame and Michael Steyn observed
that there is a "distinct and often forgotten need to audit,
measure, evaluate and research the care that burns units provide,
and management protocols need to be changed according to findings"
(Lancet 2003: 361; 980).
I also encourage you to develop a standardized set of
benchmarked data of the outcome for burn patients following
treatment. Health and disability services in Australia and New
Zealand are awash with data, but there is a woeful lack of
meaningful benchmarked data available to services, funders and
policymakers - and ultimately to the public. I regard collection
and publication of good quality comparative data as critical to
improvement in the quality of health care.
In Australia, many excellent patient safety initiatives are
being led by the Australian Commission on Safety and Quality in
Health Care - a body set up by Health Ministers following the
review I chaired in 2005 of national arrangements for patient
safety in Australia. In New Zealand, the Ministerial Review Group
led by Murray Horn has recommended a new National Quality Agency to
lead and co-ordinate safety initiatives. In a small country of 4
million people, with 21 district health boards, we cannot afford to
duplicate efforts to improve health care. Currently, work is being
led by the national Quality Improvement Committee, and two projects
have special relevance for burns care: work on "optimising the
patient journey", which is really all about how we do a better job
of co-ordinating patient care, putting the patient's needs first;
and work on infection prevention and control. Healthcare associated
infections are a major challenge for hospital environments, and
burn patients are obviously highly vulnerable to infection, so it
is good to see the emphasis on simple interventions to reduce the
risk of infection. Some hospitals in New Zealand, such as
Middlemore, are achieving great results in eliminating central line
associated bacteriema.
We need to remember that co-ordination of care is critical to
good quality care. All too often in the health sector, we see a
lack of continuity of care. We see providers from different
specialties work in isolated fiefdoms. We see incomplete handover
of information leading to a breakdown in communication and care. We
see patients falling through the cracks. To my knowledge, New
Zealand is the only country in the world that has a legislated Code
of Patients' Rights that specifically includes the legal right "to
co-operation among providers to ensure quality and continuity of
services". You'll find it in right 4(5) of the New Zealand Code. It
sets a standard that is often not attained. So it's good to see a
session on the team approach to burn care this afternoon. I'm sure
the importance of continuity of care will be a theme of your
conference.
Information
Patients also want good quality information. We
tend to focus on informed consent to the risks of surgery and
anaesthesia. But, as the New Zealand Code recognises, informed
consent is a process rather than a one-off event. It requires
effective communication between clinician and patient; disclosure
of information about the patient's condition and about the various
treatment options; and consent at the end of the process. For a
patient who has suffered a major burn, and their family, there will
be an ongoing need for information as their treatment progresses.
In an article entitled "Life after burn injury: striving for
regained freedom", Norwegian researchers Moi and Gjengedal write
that "people who have sustained a burn injury and their family
members might be significantly helped to endure the worst phases of
recovery if they are given thorough information explaining the best
possible way of dealing with the current situation, as well as
preparing them for what to expect …" (Qualitative Health
Research 2008: 18; 1621-1630.
Patient engagement
It's good to see a session on Friday focusing on the
psycho-social needs of the burn patient. All the
technically superb, well co-ordinated burn care in the world will
fail if the patient is not fully engaged in their own recovery. In
an article on "Paediatric burn rehabilitation", Barbara Latenser of
Chicago writes that "patients frequently have to deal with the
post-traumatic stress aspects of their own reaction to the initial
injury, painful injury and, in some cases, drastically changed body
image and physical appearance" (Paediatric Rehabilitation
2002: 5; 3-10). The burn surgeon and burn team members "literally
have to grow with the patient". They are "an integral part of the
patient's recovery from the burn and throughout the burn
process".
Over the years, I have always been fascinated by the insights of
patients who have written accounts of their rehabilitation - in
particular when doctors have learnt what it is like to be a
patient. Australian surgeon and rehabilitation specialist Tony
Moore recounts his personal journey of recovery after a horrific
motor vehicle accident in his 1991 book, "Cry of the Damaged Man".
Temporarily disabled and emotionally devastated, Moore records how
he learned "many things about illness which no amount of abstract
sympathy could have achieved and no textbook ever mentioned". He
writes: "Technology now ensures physical recovery for many who
would have died. But having survived severe damage, where is the
therapeutic equivalent of intensive care units for the emotional
wounds which can leech themselves into a lacerated body'. … Have we
understood that the spirit must accompany and assist this
retrieval?" [p.142]
I discovered in researching these remarks that there is a wealth
of qualitative research emerging about the psychosocial needs of
burn patients. Jeanne Reeve and colleagues from Auckland have
recently replicated a survey from the UK, and found that New
Zealand health professionals rated their skills in advising
patients about physical aspects of their burn rehabilitation higher
than their skills in relation to psychosocial aspects (Journal
of Advanced Nursing 2009). Health professionals need to be
alert to an individual burn survivor's new bodily awareness.
Obviously this includes skilled pain management both for wound
healing and patient comfort. But it extends to listening and
responding to a patient's fears and concerns about an unfamiliar
body, and helping to involve friends and family in the recovery and
rehabilitation process.
Times change. In the 1960s, on the dairy farm in south Auckland
where my family lived, my 4 year-old cousin suffered burns to 50%
of her body when she knocked over a bucket of boiling water and
caustic soda (used to clean the milking cups in the cowshed). When
I asked her recently to reflect on her care, what she remembered
most of all was the impact on her whole family (something that I
too witnessed), but also the fact that as she entered puberty she
felt unable to ask the doctors and nurses questions about her newly
emerging body and whether anything more could be done to improve
her terrible scars. Burns can sear the soul as well as the body.
For my cousin, part of her journey of recovery has been to work as
a counsellor with troubled youth.
Conclusion
Let me draw these remarks to a close. In July, I had the
privilege of delivering the Kirby Oration (in honour of Australian
Judge Michael Kirby) on "Regulating for Compassion?", to the first
conference of the new Australasian Association of Bioethics and
Health Law. My talk on that occasion explored the yearning for
compassion in health care - but I queried whether we can legislate
for the gift of compassionate care, which must come from the heart
of the practitioner.
Doctor and anthropologist Cecil Helman, in his book "Suburban
Shaman, Tales from Medicine's Frontline", writes of the strange
paradox at play in modern society. We "pay lip service to
individualism while at the same time reducing individuals
themselves to standardised, impersonal … entities".
We need to avoid this trap. In the words of the 12th
Century Jewish philosopher physician Maimonides, "May I never
forget that the patient is a fellow creature in pain. May I never
consider him merely a vessel for disease."
I wish you a successful conference.
Kia ora tatou katoa.
Ron Paterson
Health and Disability Commissioner