Ronnie Croome's speech at the Wreath Laying Ceremony at the Australian War Memorial

Your Excellency, the Governor General of Australia, Dr Brendan Nelson, distinguished guests, nurses and midwives. It is once again, with great humility that I draw this afternoon’s commemorative service to a close.

Each year we have tried to draw on the relevance of such an important occasion to present something that we always hope has been meaningful to those who have taken the time to come to the War Memorial in Canberra to pay homage to those nurses and midwives who have paid the ultimate sacrifice while serving their country. This year is no different and I thank Captain Van Ash for a most inspiring address.

As you know, this year bears particular relevance to Canberra’s history as we celebrate 100 years since the foundation stone for our city was put in place. In 1913 nursing was of course very different to the way we now deliver care and in fact, in that year, 100 years ago, nurses in the Armed Services were still remembering the heroic stories told by 60 of their colleagues who served overseas during the Boer War. Little did they realise that a year later, in 1914, many more nurses would be sent to the western front where World War One was whirling as a maddening affray,  in places such as Burma, India, the Persian Gulf, Egypt, Greece, Italy and France. These are places where some of us now consider ourselves fortunate to go on holidays and yet these were the battlefields where soldiers and nurses lost their lives. The irony of this is quite remarkable and cannot be forgotten.

In 1913, or thereabouts, Elizabeth Kenny, a young woman from Warialda in NSW, perhaps better known for developing a treatment for infantile poliomyelitis, served as a nurse in the Australian Army Nursing Service during WW1. There is no known record of formal training or registration as a nurse but nursing Elizabeth Kenny did, serving on troop ships bringing wounded home from Australia. In 1917 she was promoted to Sister, a title she used for the rest of her life. Sister Kenny said this: “It is better to be a lion for a day than a sheep all your life”.

Many have attempted to interpret the meaning of Sister Kenny’s famous words and of course they are quoted throughout the world in various contexts. But I think Sister Kenny meant these words to be  truly a statement of courage, and in this sense, nursing really hasn’t changed in the past 100 years, the nurses who served in the Armed Forces then have the same courage as those who serve now and no doubt of those who will serve in the future.

This courage that so typifies our nursing defence forces then and now, our serving nurses and midwives, many whom died during active service is today, about remembering them.

Thank you to Her Excellency and Dr Brendan Nelson for your attendance here today, both of you I know have a special relationship and fondness for nursing and midwifery, thank you to the staff of the War Memorial and to the staff of the Nursing and Midwifery Office. Thank you too, to Captain Van Ash and other members of Defence Force Nursing present today, and to all of you for taking the time to remember.

For the next few minutes however, rather than be the lions about which Sister Kenny spoke, I would like you to be sheep, as I invite you to follow the Official Party for afternoon tea in the area just behind me.

Thank you.

(Ronnie Croome, ACT Chief Nurse)

Consumer perspective on end of life care

Good morning and thank you for asking me to talk from a consumer perspective on this important subject.

My interest in this topic first arose from the death of my parents.

My father was in his 80s when he was admitted to a nursing home, or should I say it's modern correct name, a Residential Aged Care Facility, with dementia. He had a heart attack about one year after he had been in the nursing home. They rushed him up to the local hospital where he was admitted to the coronary care ward. Unfortunately, because of his dementia he could not remember where he was and kept pulling out the IV and the other attachments to his body.  After that disastrous episode, we, his family, got the message across that he was not for transfer to acute care and he died a year later from pneumonia.

My mother died following a stroke.  My mother was petrified of having a stroke and being incapacitated in a nursing home as had happened with a friend of hers.  So when the doctors in the stroke ward told me that my mother’s latest stroke was very serious and that the scans showed that she had extensive brain damage, I advised them that she wanted palliative care only, which was agreed. So I was astounded the next day to arrive and find that my unconscious mother was receiving intravenous fluids.  They informed me this was “palliative” and who was I to argue although I did think it was odd.  Anyway, after 3 days, my mother woke up and she had such major cognitive damage, that she was not eligible for rehab and we organized for admission to an aged care facility where she died 6 months later.

I have since learned from the palliative care people here in the ACT, and from a wonderful Alzheimer’s Australia publication by Prof Colleen Cartwright on end of life care that you do not need fluids as part of the dying process and that, to quote Prof Cartwright:

“To continue artificial nutrition and hydration when the person has reached this stage of their illness (i.e. dying) can actually increase their suffering”

And certainly, this is what happened with my mother – her suffering was increased by their artificial hydration but the stroke ward specialists were not around to see the consequences of their actions.

These experiences of my parent’s deaths greatly increased my interest in what we now label as futile care, that is, treatment that will not improve the outcome, such as leading to a decent recovery.  Also, because I have a reasonable chance of ending up with dementia in my 80s as did my father and his mother, I do not want futile care to prolong that experience.

As an active member of the community and as one who mixes with lots of older people through our older people organisations, I became very interested in the worry about the coming “silver tsunami” for health care from the baby boomers reaching old age.  For me, it is not only this demographic which is increasing the health bill but it is also now how we practice medicine on people who are clearly dying.  Over the last 1-2 decades, longevity has increased – the average age of death is now in our 80s whereas it was previously in our 70s, yet our quality of life in the last decade of our lives has decreased.  

So, I became an advocate for advanced care planning and I became the consumer representative on the ACT Respecting Patient Choices committee.  Then, a few years ago, when Professor Ken Hillman’s book Vital Signs came out, I was fascinated with what I learned.  I was particularly interested in his argument about how we are wasting money on “futile care” (although this is not a term used by Hillman in his book).

I am also interested in Hillman’s reports about useless, high technology care in hospitals at end of life resulting in some horrible deaths in intensive care. And that the money spent on dying in hospitals could be better spent on good community care and that these decisions about the better use of the health dollar cannot be made by politicians or health bureaucrats but are the responsibility of clinicians and community. This is why the forum today is so important. We want you to share your views on this important topic so that the ACT Government has a clear view on how health care could be practiced better at end of life in the ACT.

So, what are the tools available for improving end of life care and what are the barriers to moving from acute care focused on curing and saving us, to palliative care at end of life?This afternoon we will address these types of questions. So, I would like to share some thoughts about the tools and barriers.

First – tools for consumers.  As many of you know who are here today, advanced care planning tools are a good method for retaining some control of our end of life experiences.  Yet very few people express their wishes for their end of life treatment by completing an advanced care plan.

Over 500 people died in Canberra Hospital last year, but only a small minority would have had an advanced care plan. Why? The answers are complicated.

This afternoon we will explore how we could improve the uptake of advance care planning and the barriers for us consumers, for people with no medical training.

For clinicians, the questions relate to the barriers for moving from acute/curative care to palliative care at end of life?

I know this is a question that interests Peter Saul who is here with us today.  I heard him interviewed on the radio earlier this yr with a palliative care specialist who spoke about cancer treatment and noted that haematologists were the worst at addressing the inevitability of death with their patients. It seems that for most haematologist/oncologists, the focus is cure and it is defeatist to talk about the option of dying.

This reminded me of some consumer stories of dying in the ACT. Mark’s (a pseudomen)  story follows with some details changed to protect privacy.

Mark had to make some decisions when his secondary cancer treatment failed. He and his family discussed changing their oncologist/haematologist but did not. Hard thing to do – change doctors.

The result – Mark went on a number of trials (under the banner of we can still fight this cancer) which had some horrible side effects, such as a colostomy and other things, and eventually was in Intensive Care almost unconscious where his specialist did not even pay enough attention to realize the extent of Meg’s incapacity at this stage.  Fortunately, the weekend came, and an another haematologist came on duty.  He was shocked at Mark’s condition and discussed with Mark’s family the option of moving to palliative care.   This was agreed and organized but on Monday, when Mark’s regular specialist came back, he disagreed and said to Mark’s wife “we can still fight this”.  Fortunately, Mark’s wife was empowered enough to refuse the specialist’s proposals, and Mark was moved to Clare Holland house and died a few days later.

This raises the issue/problem of hospital culture where “death is seen as failure of treatment”.  At the ACT Clinical Senate earlier this year leading ACT clinicians considered this topic of “Futile care”.  There was no disagreement in the room. There was strong consensus that there is lots of futile care in hospitals and that there is a dominant culture among hospital clinicians where “death is seen as failure of treatment”.

But what is futile and who decides?  This brings us to the topic of information for consumers and education and support for clinicians.

I know sharing bad news/information with families is not easy and requires time and skill.  I experienced this with my mother’s stroke.  My siblings found it hard to believe that my mother was so badly damaged that she would not be eligible for rehab and argued “we will fight for her”.  Only after my sister observed my mother struggling and failing an assessment that she had easily passed after her first mild stroke did my siblings and their families accept the bad news that they wanted to reject the previous weekend.

Similarly, most hospital doctors tell you a story of a relative, generally a son, insisting “everything possible should be done” to save their parent.  Just such a case is discussed this year in the March Medical Journal of Australia where a 63 yr old man, named John, with end stage cancer and recently diagnosed pneumonia, has a son who objects to the medical decision to move to palliative care.  This edition of the journal is devoted to the discussion of futile care, ethics and patient autonomy – a very pertinent, timely topic.

Which brings me to my conclusion:  

My congratulations to the Local Hospital Network Council for addressing this important issue.  It is a thorny topic which has the potential to provide better end of life care more efficiently, allowing us to use our scarce health dollars more effectively and for consumers and our families to experience a good death.

A plea to clinicians to talk to patients about dying when necessary (I know it takes time) but it is worth it and saves time in the long run and has a greater chance of reducing futile care and improving end of life care. Information is power for patients and families and we trust health professionals to provide us with information and help us to understand our options. Don’t be scared to give a diagnosis of death.  Facing the inevitability of death is difficult for both consumers and many clinicians – but we need to do it better.

Improving the system will involve all of us, - consumers, citizens, clinicians and policy makers to think about the systems and tools we need to improve end of life care.

Adele Stevens PhD

Vice President

HFDD Conference Report – 11 April 2013

In late February 2013, Kerry Snell and I attended the International Quality and Productivity Centre’s Health Facilities Design and Development Conference in Sydney.  The conference discussed the challenges of creating health facilities to meet future demands on the sector from the perspective of project managers, construction firms and academics.

The conference opened with the keynote presentation via Skype from Professor CraigZimring of the Georgia Institute of Technology.  Professor Zimring discussed the development of evidence based design and its implementation in the US context.  Studies quoted by Professor Zimring noted that US hospitals are unnecessarily dangerous, with one in twenty patients contracting a healthcare acquired infection.

Zimring stressed the importance of evidence based design as a clinical tool that can improve the quality and safety of the hospital experience, and provided a number of examples where this can proven to be the case.  Curtains used in the hospital context have been linked to outbreaks of infection, leading to exploration of other options, such as antimicrobial fabrics, blinds that are controlled electronically and not touched by staff; and electrostatic opaque glass. 

In addition, the rising levels of hospital noise – generated from increasing equipment noise, staff discussions and hard surfaces, among other factors – were shown to have detrimental impacts on patient recovery.  Excessive noise, i.e. noise of over 35 decibels, can cause ventricular arrhythmias, disrupt sleep, elevate heart rate, increase the need for pain medication, decelerate wound healing, alter gastric myoelectrical activity and autonomic nervous function.  To mitigate the effects of noise, it is necessary to have soft surfaces (which meet infection control requirements), a reduction in public address announcements, enclose sources of noise such as equipment and require staff to speak softer and in designated areas.

Lighting and visibility also impact on the length of patient stay and mortality rate.  Studies found that the death rate of particular patients was 70% higher in darker rooms, while another study found that other patients stayed one day less in sunny rooms and required 22% less pain medication.  Lack of patient room visibility by nurses resulted in a 30% higher mortality rate for high acuity patients in a cardiac ICU ward.   There was also a 31% higher fall rate in low visibility rooms.  Nurses need to be able to easily see each other and their patients to effectively coordinate care.

Professor Zimring noted some US examples of where evidence based design has made a positive impact on patient outcomes – Fort Belvoir Community Hospital, where recovery has been improved by the use of infection control compliant soft panels to minimise noise and the use of single patient rooms;  the Southcentral Foundation, an Alaskan native operated health service, where employees have no private offices and care is delivered in a multidisciplinary team approach; and the Dublin Methodist Hospital, which has employed decentralised nurses’ stations, hand washing sinks on entry to encourage compliance and single rooms with a uniform configuration of equipment to facilitate treatment.

Professor Zimring emphasised the need for continuous learning and quality improvement through evidence, simulation and “systemness”, as well as a focus on patient experience and empowering patients to take up a role in their own care.

Tony Michele, the Project Director for the Victorian Comprehensive Cancer Centre (VCCC) spoke about this new project.  The VCCC has three objectives: to reduce the cancer burden by 2029, to establish a world class centre of excellence in cancer (increase percentage of patients participating in clinical trials to 15%), and to increase investment in biomedical research.  The VCCC is first and foremost a medical research facility, but it does have 100 inpatient beds.  In terms of project management there were 2 deliverables:  the creation of a collaborative entity and the development of a purpose built facility.

Aladin Niazmand, the Director of Health Projects International (HPI), spoke about the role of modular design in increasing flexibility and reducing costs and building construction times.  Modular and prefabricated designs have become cheaper and more efficient every year for two decades.  There is currently incredible variety and functionality in modular design options.  HPI has produced a mobile app of International Health Facility Guidelines which allows for departmental planning on an industrial scale, 3D modelling and room layout sheets generated from models.  Prefabricated hospital construction is innovative and is not “boxy”.  One third of construction can be completed in a day using prefabricated materials.

David Walker , Executive Director of the New Bendigo Hospital Project spoke about the challenges of constructing a new regional hospital on an existing site.  The existing Bendigo Hospital has been on the same site since the 1850s, and much of the land around it is protected by heritage listing, making permission to work on it difficult to obtain.  It is the only public hospital in Bendigo and is a teaching and regional referral hospital.  The site is split across a number of roads, and some services are spread out across Bendigo – the thinking is to bring services like Mental Health into an integrated facility to help reduce stigma.  $630 million has been estimated for the redevelopment of the hospital.  Patient wayfinding has historically been an issue.  The website is the main communication tool and receives 42000 hits per week.  Projects, MOCs and sketch plans are available online.  Four information sessions are held each year, with attendance figures ranging from 40-200 people.

Ronald Hicks, Principal and Head of Health + Research at consulting firm Rice Daubney, spoke about the challenges of the integrated cancer centre (ICC) concept in an Australian context.  The  ICC concept finds its origins in the US during the 1970s, though there has been marked development of the concept since then.  In the Australian context there is a diverse approach to service with varying degrees of integration.  Some of the design challenges of ICCs are the requirements for broad levels of consultation and interaction.  Traditional stakeholder interactions involves speaking with clinicians; ICCs mandate interaction with service users, the consumers/patients/families.  Both experience-  and evidence-based design should be incorporated into design and planning.  It is also important to note that not every part of the facility is/should be ruled by clinicians.  Hicks also advocated an integrated approach to parallel therapies.  There also needs to be an appetite for innovation.  Two examples noted by Hicks were the Prince of Wales Comprehensive Cancer Centreand the Chris O’Brien Lifehouse at RPA.

Trisha Ansell, the Project Manager at Barwon Health, presented on the complexities of decanting a complex health facility, namely the Barwon Health Children’s Ward.  The old ward contained mostly shared rooms and bathrooms, which posed significant infection control concerns.  There were limited staff and parent facilities.  Treatment rooms were also used for storage.  A new ward was constructed within a fully operation hospital.  Some of the challenges were:

o   architects with limited experience in health

o   access for builders and construction noise

o   infection control

o   interruption to services

o   temporary accommodation required

o   reduced number of beds.

Barwon Health chose a local architect so that they could be familiarised with the hospital so that they could be called on assist later with smaller projects.  The transportation of materials and waste to and from the building site was also an issue.  These, and other, challenges were managed through a comprehensive decanting process.   The new ward contains dedicated spaces for parents and staff, including a kitchenette, lounge, TV, washing machine and bathroom; more space for cancer patients, negating the need for travel to Melbourne; single or double rooms; a playroom; and a staff base made from glass, allowing noise to be decreased but for staff to be visible.  Ansell’s final message about managing these kinds of projects was to “under-promise and over-deliver”.

Heather McGowan.

CHART - National Aged Care Conference, Canberra.

The Cooperative for Healthy Ageing Research and Teaching (CHART) at the University of Canberra held its inaugural National Aged CareConference on Friday, 19 April 2013.

The keynote speaker was Professor Lynn Chenoweth from the University of Technology Sydney.  Lynn is the Professor of Aged & Extended Care Nursing in the Faculty of Nursing, Midwifery and Health at UTS.  Professor Chenoweth spoke about creating caring cultures for older people within the health and residential aged care systems. 

The percentage of Australians aged over 65 has been increasing since the 1980s, and while some disease rates are falling, the prevalence of mental health and neurological conditions is rising.  This increase in neurodegenerative disorders is resulting in an increase in health spending, as these conditions are the most expensive to manage.  In fact, health care costs across all conditions are rising faster than general economic growth. 

There are challenges at the system, organisational and direct care levels which contribute to lack of safety, poor care coordination and care of chronic conditions, treatment errors and adequate transition care in hospital discharge.  Professor Chenoweth spoke about the need to have the right care, at the right time, in right place, with right provider – a concept that can be achieved through the philosophy of person-centred care.

 

An alignment with person centred care requires that staff are appropriate educated and trained, information is shared between all stakeholders, and that processes are regularly reviewed.  Professor Chenoweth then discussed three projects that demonstrated the benefits of person centred care – the CADRES Study, the EN-ABLE Project and the PerCEN Study.  These studies demonstrated that adoption of a person centred care model resulted in an increase in the quality of care and patient wellness scores, a decrease in patient agitation, fewer incidences of falls and injuries and a more positive emotional response to care.

This idea of adopting a more person-centred approach to the delivery of care was further developed by Fritz Quero, a PhD student at the University of Canberra who spoke about a project to introduce a homelike philosophy of care at a Calvary Retirement Community facility.  This model of care focuses on creating an environment which is able to incorporate the “rituals, routines and personal touches” that residents associated with their own homes into a residential aged care facility.

Fritz discussed the importance of language, and how the facility doesn’t have wings, but “households”, not dementia units, but “memory support households”.  The homelike philosophy of care is about deinstitutionalising residential aged care, promoting shared decision making and emphasising living well, rather than just waiting to die. 

Residents’ rooms and common areas in the Calvary facility were transformed by personal touches and household furniture.  Residents were able to choose the colour of paint on the walls, and the nurses’ station has been infused into the household – it blends into the living room, rather than being a separate area.  As Fritz discussed, implementation of this philosophy of care required consideration of the systems, procedures, and processes already in place.  In addition, it required consultation with the residents and training with staff to help them adapt to a new way of delivering care. 

While there have been some teething issues, such as the lack of understanding of the duty of care from non-clinical staff, and misunderstandings of clinical governance responsibilities, the majority of outcomes have been positive, as Fritz discussed.  Both clinical and non-clinical staff members understood and have become more involved in delivering this model of care.  Residents are more empowered, having been given the opportunity to participate in their own treatment and determine the timing of their care.  There has been a marked decrease in complaints, and an increase in satisfaction with overall care. 

The projects discussed by Lyn Chenoweth and Fritz Quero demonstrated the positive benefits, for both staff and consumers, that can be derived from a more respectful, person-centred approach to the delivery of care.  

Heather McGowan

HIP Project Officer

“The single biggest problem in communication is the illusion that it has taken place.” – George Bernard Shaw

After more than six months working with HCCA’s Health Infrastructure Program team, conducting information sessions and engaging with the community, I recently had a chance to take a step back and reflect on some of the learnings that have been generated through this process.

One of the key concerns of many community groups that we’ve spoken to has been communication.  Most people have never even heard of the Health Infrastructure Program, much less know what the Program involves, and what kind of improvements, changes and restructuring that they will experience as part of it.  By delivering information sessions, we are slowly helping to inform the ACT community, but this kind of approach needs to be supported by a range of other communication techniques.

When compared to other health services the ACT Health Directorate is lagging behind in terms of communicating with Canberra’s citizens.  The Health Directorate’s website is out of date with some sections of the site still boasting about the display of sketch plans…in 2011! And the website still refers to “Your health – our priority”, a slogan that is no longer in use.  As it is, the Health Directorate website is not an effective tool for informing the public about this massive program of public works, and often a fundamental restructuring of how care is delivered. We are very keen to work with the Directorate to improve the level of information to the Canberra community.

There are lots of excellent examples of effective websites that the Health Directorate could emulate.  The Box Hill Hospital, the Fiona Stanley Hospital and the Royal North Shore Hospital websites all contain a variety of media about their (re)developments and health initiatives.  

Kerry Snell and I attended a Health Facilities Design and Development conference earlier this year and saw an interesting presentation about the New Bendigo Hospital.  For this project, the website is the main communication tool and offers members of the public project outlines, Models of Care and sketch plans.  This website receives 4200 hits per week.  However, there is a recognition that electronic communication alone is not enough, and accordingly four information sessions are held each year, with attendance figures ranging from 40-200 people. 

Communication isn’t just about the big picture stuff, either.  During redevelopment, restructure and relocation, it is so important to have effective communication and appropriate signage to facilitate consumer and staff movement around facilities.  At the Canberra Hospital, there is a great deal of development currently being undertaken.  However, services are still going on, so interim measures are taken.  Issues occur when people attempting to access these facilities are unfamiliar with new arrangements, or when signage is poor.  A key example of this is the Adult Mental Health Unit – despite the unit having been open for over a year, there are still signs which point to its former location. We've also heard reports from women accessing the Centenary Hospital for Women and Children that the entrance is difficult to locate.  The signage inside the Centenary Hospital is also inadequate - on a recent visit to the facility, I noticed at least 6 women walking around looking confused.  Luckily, there happened to be helpful staff members around who offered directions.

A sign pointing to the old mental health facility at the Canberra Hospital.

It’s time for the ACT Health Directorate to put a strong, flexible and effective communication strategy in place so that the Canberra community can be adequately informed about the program of works for which their tax dollars are paying.  Having such a strategy will also enable better access to services for consumers, who will be informed when parking or location arrangements change.  It will also reduce opportunities for distress when interim arrangements are employed – an informed consumer is (generally) a more understanding consumer.

Communication is key – capisce?

Heather McGowan

Health Infrastructure Program