South Island paramedics given best tool for the job
St John paramedics across the South Island have been given direct access to key patient information via HealthOne’s Shared Care Record View. This is a secure record that stores patient health information, including GP records, prescribed medications and test results.
From this month, paramedics are now able to use their portable electronic devices to access key information, such as advance care plans, acute plans and hospital discharge summaries, at the point of care. Acute Plans contain patient specific information on how to deliver care for complex patients during an acute exacerbation. Advance Care Plans record a person’s wishes and preferences for future healthcare and end-of-life.
St John Right Care Advisor and Paramedic Orla Fowden says paramedic access to HealthOne was something she wanted to make happen for some time. “I was ecstatic when I was approached by the South Island Alliance Palliative Care Workstream, who identified us as a vital partner in their patient’s journey and that our paramedics have been under resourced with regards to our patient’s health information. They agreed this left us ill-equipped to provide the best possible care to this cohort of patients, with limited access to their acute plans and advance care plans.”
The South Island Alliance connected St John with the HealthOne/Health Connect South team, and an initial working group was formed. “The Alliance was very keen to make access available to front line ambulance personnel. They were vital in instigating the initial working group and have demonstrated immense advocacy for us. They have been a part of the working group from start to finish and arranged regular meetings to check in and help where they can. Throughout the project, I was made to feel welcome and supported – I couldn’t have done it without their encouragement.”
Grant Wells, Senior Project Manager for HealthOne says although HealthOne has been providing access to St John’s clinical desk staff since 2017, enabling paramedics to have remote access is an exciting extension of this work.
Joanna Hathaway, South Island Alliance Regional Programme Facilitator – Palliative Care Workstream (PCW), says improving information sharing between health services in the South Island is one of their key goals. “Patients nearing the end of their life are often cared for by multiple health services in many different settings, all with their own patient management systems.
“This can make it difficult for clinicians to access and/or share patient information and can lead to inefficiencies and inconsistencies in patient care. With this in mind, the PCW has been bringing together key stakeholders to look at ways to improve information sharing so all of our patients can get the best care possible, regardless of which service is currently caring for them.
“From very early on in the discussions, it was clear that greater access to patient information via HealthOne would assist St John paramedics with their assessment and treatment plans when called out to see palliative patients in the community, as their symptoms were often due to underlying illnesses that could be managed differently, thereby achieving better results for patients and potentially avoiding unnecessary trips to hospital.”
With the support of the Canterbury Clinical Network, Jo says the PCW has been working with St John and HealthOne since September 2019. “We are thrilled to see the result of everyone’s efforts with St John paramedics now being able to directly access patient information via HealthOne from their portable devices. The PCW would especially like to acknowledge the hard work of everyone who was instrumental in bringing this complex project to fruition.”
St John Extended Care Paramedic Saxon Ross is grateful for the “endless benefits” of accessing HealthOne as it allows him to gain thorough medical histories for all his patient’s [not only those with palliative care needs].
Saxon now finds himself utilising HealthOne on a daily basis as “historically we relied heavily on a patient’s personal knowledge of their medical history, whereas HealthOne access allows confirmation and provides a significantly more detailed history. This is useful in managing patients with complex conditions and complex management requirements, as well as identifying patients with specific DHB alerts and care plans.”
While there are still some technical challenges to work through, Orla says the tool is a huge step forward for paramedics. “So far, I have had nothing but great feedback. We have had over 100 new applications in the first week of going live and I’m anticipating about the same again over the next few weeks.”
South Island VOICES survey results released
Results from the first South Island survey of bereaved people have been released by the South Island Alliance Palliative Care Workstream (PCW).
Over 500 people from around the South Island gave their views on the quality of care provided by health services during the last three months of their partner, relative or friend’s life, for the South Island VOICES (Views of Informal Carers Evaluation of Services) survey.
The results give the PCW a snapshot of their experiences and perceptions, which will help a wide range of health services to review and plan care for people facing end-of-life illness.
The PCW would like to thank those who participated in the survey, as well as the University of Canterbury, and Kate Reid, Senior Lecturer in Palliative Care, for undertaking this important research.
Read the South Island VOICES Statistical Bulletin and the supporting dataset.
Reflections From Rosewood
25 May 2020
Jo Hathaway, Regional Facilitator and Palliative Care Clinical Nurse Specialist.
As I start to return to my usual role, I wanted to take some time to reflect on the last couple of weeks and acknowledge and thank the vast number of people in Canterbury DHB who have poured countless hours in to supporting the patients, families and staff of Rosewood Rest Home and Hospital.
I volunteered to be redeployed in the COVID-19 hospital ward at Rosewood. I worked 60 hours over seven shifts as a palliative care clinical nurse specialist.
It is still hard to describe the situation we were faced with. Firstly, we changed into scrubs in the clean area, then got into our personal protective equipment (PPE) in the transition zone (under the watchful eye of our fabulous PPE champions). Then it was brief introductions to those who would be our colleagues for the day (registered nurses, enrolled nurses, student nurses, theatre nurses, paramedics, dental nurses and caregivers, all redeployed from other services) and straight into the ward. From there, it was all hands on deck to keep up with the never ending tasks of caring for elderly, sick and fragile patients, whom you’ve never met before.
Meanwhile your brain clouds over until your lungs adjust to breathing through a mask, becoming increasingly breathless with every shouted conversation to an unidentifiable colleague. Patients’ symptoms would flare up, with little to no predictability or recognised pattern (yet) alongside other underlying health issues presenting their own symptoms. Diarrhoea, back pain, dry cough, delirium, the occasional temperature, lungs filling up fast with thick mucous and decreasing oxygen saturation that betrayed the underlying seriousness of their illness. For some, positioning became a matter of life or death.
Everyone worked tirelessly in the built up heat of PPE to keep up with the heavy nursing tasks required, while still taking time to fuss over the personal touches for each patient, like finding the right station on the radio or singing happy birthday complete with a little cake and candles. Gloved hands struggled to make the touch-screen of the electronic drug chart or smart-phone work, or to type the right letters into patients’ electronic records for the GP to read remotely.
Fortunately, after the initial onset of acute symptoms, most patients appeared largely untroubled by the roller-coaster of symptoms that lingered as days turned into weeks. It seems to be the one positive in all this, on their bad days they would just go quiet, refuse food and fluids, tuck up in bed and sleep peacefully. But this is when we worried about them the most.
The most heart-breaking of all of this though will always be the inability to unite families with their loved ones in their time of need. I cannot imagine the worry and fear this must cause, despite our best efforts to keep in touch by phone or video call. Dying and death are so steeped in our social rituals and traditions. Not being able to be there with them, and not being able to accompany other family members during funerals and the grieving process will, I’m sure, leave many lasting scars. Families just hoped we could get their loved ones through the illness until they were able to be with them again, come what may. We tried, we really did.
Meanwhile, on the other side of the glass door separating us from the outside world, we could see many others working equally as hard. Deliveries arrived; a constant stream of clean linen, more scrubs, boxes of PPE, equipment, food for patients, food for staff, medical supplies, gifts for Rosewood from neighbours and industry colleagues, all of which we were using as fast as they arrived. More staff arrived, ready for induction in to their new roles as receptionists, cleaners, administrators, or to receive training on the use of PPE in preparation for work within the clinical areas. Beyond that, there were security guards who stood alone on the footpath in 10-hour shifts.
Unseen but greatly appreciated, was the Canterbury DHB Emergency Coordination Centre (ECC) team that coordinated us all and devoted themselves to ensuring the smallest details were accounted for. I cannot begin to imagine the mammoth task of staffing and operating an aged care facility in the throes of a pandemic, and all from afar. But what I can say is that I’m deeply grateful to each and every person who sorted their piece of this giant puzzle and kept us all safe. The residents at Rosewood may be elderly with many suffering advanced, long-standing illnesses that render most unable to communicate, but they still delight in their favourite music or their favourite meal. They could still let me know where to stick my thermometer when they were tired of being poked and prodded. They were once soldiers, teachers, mothers and athletes and they still matter deeply to their families, to the Rosewood staff and to those of us who only met them briefly. I will be forever grateful to, and proud of, all those who honoured these people by going above and beyond the call of duty to do everything possible to care for them.
I am also humbled by the continuation of care for those of us who stepped in and out of Rosewood. I received phone calls and multiple emails from ECC staff preparing me as best as possible for the role (although in truth, it was more intense and heart-breaking than I could have possibly imagined), as well as phone calls and emails from occupational health now that I have finished my work there; making sure I am ok and that I am clear about the services available to me and what is required in the weeks ahead as I return to my usual role. Having unrestricted access to a full range of PPE during my work, as well as health assessments and swabs on completion, has been a significant psychological support throughout, and has enabled me to feel confident about my safety at work. One less thing to worry about in this extraordinary set of circumstances. Thank you.
I would also like to acknowledge the often unsung heroes of our health system; the staff working in aged residential care. Without knowing anything about the residents when I arrived, it was still very obvious that these people were not just well cared for, but loved. The little messages left around the place signalling to others that ‘Bob’ likes fruit with his Weet-Bix but ‘Nancy’ hates mushy carrots, the smiling faces in photos on the wall of outings with staff. I know they were deeply distressed by having to leave their patients, heart-sick when hearing from afar about the devastation COVID-19 was wreaking on those they consider family, and completely lost when returning to a workplace so unrecognisable and with many missing faces. For sure we will have put things in all the wrong places and missed filling in a few forms, but we did our best to replicate their love and care of patients in their absence. The smiles from patients on their return told us they were greatly missed though.
No doubt it will take a long time for the Rosewood community to pick up the pieces and move forward. I hope we will all continue to offer them the support and resources they need.
With my most humble gratitude for all the mountains that have been moved by many in recent weeks,
Regional (South Island) Programme Facilitator – Palliative Care
South Island Alliance Programme Office
Leadership Changes For The Palliative Care Workstream
|From left: Palliative Care Facilitator Jo Hathaway, Dr Kate Grundy, and the new Palliative Care Workstream Chair Dr David Butler.
Palliative Care Workstream champion Dr Kate Grundy has stepped down from her role as Chair of the group, which she has expertly steered since it was established in 2014. Fortunately, Kate has agreed to stay on in the group and is already eyeing up her next project to improve palliative care services in the South Island. Dr David Butler, who joined the group in November 2016, has bravely stepped up to fill Kate’s shoes and become the new Chair.
David, currently Clinical Leader at Otago Community Hospice, completed medical school at Medical College of Wisconsin (USA) and certified in three specialities: palliative and hospice medicine, adult internal medicine and paediatrics. David’s previous experiences range from work as a GP, to Director of a Hospital Medicine Group, to Executive Medical Director of a large Hospice/Palliative Medicine Program in the USA.
“On the heels of Kate’s departure from the Chair role, I would like to thank her for her leadership and service over the past five years,” David says. “Kate’s passion, commitment, energy and institutional knowledge, surrounding all topics related to palliative care delivery in the South Island, will be difficult to replace and sorely missed.”
Meet The Team Staff Profile: Jo Hathaway Palliative Care Regional Programme Facilitator
Jo Hathaway with the Abbott and his attendees at the Tibetan Buddhist Monastery in Nepal.
Jo Hathaway’s first encounter with death was at around seven years old, when her nana suffered a cardiac arrest and was resuscitated. This was the same nana who used to chat to her deceased husband while gardening, whom she had lost suddenly at a young age.
“Nana told me her near death experience wasn’t scary at all, but quite lovely. So I grew up not seeing death as something to be feared, or as the end of a relationship.”
Jo had dreamed of becoming a nurse or a vet as a young girl, so it’s no surprise she ended up in a career caring for people with life-limiting illnesses. Born in Timaru and raised in Christchurch, she graduated as a registered nurse in Auckland and left the country for her OE in the mid-90s. She ended up in London working for a nursing agency, where one of her roles was nursing at a hospice.
Upon her return home four years later, Jo decided palliative care was “her thing”. Twelve years later, she was looking after the terminally ill Abbot of a Tibetan Buddhist Monastery in Nepal.Specialising in palliative care throughout her career, Jo says she appreciates the opportunity to develop meaningful relationships with patients and their families. “It’s an area I felt I could help people make something potentially quite stressful, a little bit easier.”
Over the years, Jo has worked in various nursing roles at Mercy Hospice Auckland, most recently as a palliative care nurse specialist leading a team of four nurses looking after a case load of 70 palliative patients. She also worked at Hospice North Shore, both nursing and developing their education and training programme; and helped implement palliative care services at an aged residential care facility in the Bay of Islands. She also completed a research thesis for her master’s degree on the experiences of Chinese immigrant families who had used hospice services in New Zealand, finding large gaps in care for this population.
Somewhere in between her roles, a spiritual journey and a trip to Nepal culminated in Jo nursing the Abbot. “I studied Buddhism for quite some time as I wanted to learn how to be a good person, and I found it a useful tool. I completed a course on Tibetan Buddhism in Nepal in 2001 and the Abbot became my teacher. So I knew him for 10 years before he became sick.”
Jo says the experience of caring for the Abbot during his illness was both amazing and incredibly challenging. “I learnt so much from him. I had spent years working in a Western medical model, and I had to unlearn so much of that in order to approach illness from a more Eastern spiritual model, where spiritual health is much more important than what is or isn’t happening to the body. So, all my fancy symptom assessment training wasn’t as important as making sure he had the time and space to meditate and pray.”
Living in a spiritual community of 400 monks and 300 nuns while learning to become one piece in a very large puzzle wasn’t easy, she says. “In this large, collective community, the Abbot’s illness was everyone’s responsibility, so everything had to be done by consultation and consensus. I had learned this during my master’s research, but living it was something entirely different. They also make sure that no one is ever left alone, so I had to learn how to do even small things using a much more collaborative and group approach.”
Jo soon realised the Abbot didn’t really need her. He wasn’t interested in Western medical treatment – including drugs to relieve the pain. His advanced complex symptoms did not worry him in the slightest, but because he was such a respected figure in the wider international community, many people worried about him. Jo ended up becoming sort of a ‘safety net’ for the monastery. “When people realised the Abbot had a Western palliative care nurse specialist on site 24/7, they felt reassured that the Monastery was able to give him the best care possible, which left the Abbot and his monks and nuns to get on with doing things their way.”
Jo stayed at the monastery throughout the Abbot’s illness, as well as the traditional bereavement period of 49 days after he died. She also returned to Nepal for his memorial a year later. “The Abbot taught me the merit of living a simple life and choosing kindness, no matter what. Living with a spiritual master, you see how he puts that into action with normal, day-to-day challenges. Because I was with him all day, I observed how he dealt with everything.”
Jo’s experience in Nepal also strengthened her interest in diversity. After returning to Mercy Hospice Auckland, working with refugees and immigrant populations became her specialty. “How do we provide palliative care to people with different cultures, traditions, lifestyles and beliefs? Working in a different culture helped me to see things from different perspectives. It’s about finding out what’s most important for patients and their families and then navigating them through the services available.”
With most of her family in Canterbury, Jo returned home with her now three-year-old son over a year ago. So when she applied for the position of Regional Programme Facilitator for Palliative Care, the South Island Alliance snapped her up. “When you work as a clinician, you start recognising the problems within the system, on a day-to-day basis,” she says. “Clinicians know what needs to change, but don’t necessarily have the access, time or resources to make it happen, which can become disheartening over time. By getting involved in the South Island Palliative Care Workstream you can see all the great initiatives that people are working hard at implementing across the region. Joining the team and helping to ‘be the change’ is a positive way of channelling my passion for palliative care and finding solutions that work for clinicians, patients and families.”
Jo says she is happy to have inherited the dynamic and enthusiastic Palliative Care Workstream group. “It’s full of amazing, experienced and passionate clinicians. We have just finished the Palliative Care Roadshow events around the South Island, followed by our regional Planning Day, where we took all the concerns and ideas raised by a wide range of clinicians and turned them into goals and action plans for the future. We know our population is aging and many people are living longer with complex illnesses, so planning for greater demands for palliative care is challenging on many fronts – but we have a great team of people working hard to address these issues and it’s an exciting challenge.”
Palliative Care Roadshows Visiting South Island Dhbs
|The South Island Alliance’s Palliative Care Workstream Chair, Kate Grundy. presenting at a roadshow meeting. Photo credit: Aleisha Whitehead
A series of palliative care roadshows across the South Island is opening up dialogue on enhancing end-of-life care and providing an opportunity for health professionals to discuss survey results at a local level. “It’s about breaking down the barriers between services to become more integrated and patient-centred,” says South Island Alliance’s Palliative Care Workstream (PCW) Chair, Kate Grundy.
GPs, district nurses, aged residential care nurses and management, hospice staff, hospital teams, allied health and PHOs from across the spectrum have attended events in Nelson, Blenheim, Dunedin and Invercargill. Upcoming roadshow meetings will be held in West Coast, Timaru, Christchurch and Ashburton in November. The Workstream and interested stakeholders from around the region will then work to develop a plan for regional and local actions.
The main focus is on the provision of integrated palliative care – with attention given to any innovations and developments, as well as the gaps and challenges, using reports from recent regional palliative care surveys to drive the discussion. The surveys were carried out to learn about the status of palliative care across the South Island and what progress has been made towards the implementation of the Resource and Capability Framework for Adult and Palliative Care Services in New Zealand (2013).Feedback on the roadshows has been very positive, says Kate, who led the roadshows. “One of the hospice teams commented that the discussion on specialist versus primary palliative care was the best they had ever had, and useful in helping them to understand the bigger picture and what’s needed in the future
Upcoming Roadshow events:
Dr Beth Morgan, of Hospice Marlborough, attended the roadshow in Blenheim and says Kate did a monumental job of delivering a 30,000 foot view of palliative medicine. “She has a real ability to clearly explain data and the ‘face’ of palliative care shows through in her enthusiasm and expertise/history in the field. All and all, it was a very worthwhile experience.”
Kate says it’s a great chance for health professionals to network and discuss not only the challenges, but also talk about what aspects of care are working well. “We’re looking forward to the remaining meetings, culminating in bringing people together from around the region to consider all the ideas discussed and formulate a plan to drive quality improvement changes, locally and regionally.”
Christchurch: 22 November, 5.30-7.30pm at McDougall House, Nurse Maude, 24 McDougall Ave
Ashburton: 23 November, 12.30- 1pm, Museum Room, Ashburton Hospital
Christchurch: Final round-up and planning day, 4 December, 11am-3pm, Hinton’s Function Centre
See the palliative care survey results here
Palliative Care Survey Reports Online
Reports from a range of surveys undertaken by the Palliative Care Workstream (PCW) have provided a snapshot of palliative care in the South Island.
The Resource and Capability Framework for Adult Palliative Care Services in New Zealand was released five years ago, so it was appropriate to assess its implementation and relevancy as a foundation for palliative care provision in the South Island. “While it’s clear that local solutions will be needed for the different services and regions, the surveys have provided a unique view of the gaps and challenges that exist and the need for consistency of care,” says PCW Chair Dr Kate Grundy. “It gives us an opportunity to see how far we have come, but also of where we need to go.”
The five surveys were carried out during 2015 and 2016. The first two surveys examined specialist palliative care services. The PCW then undertook three further surveys to understand the provision of primary palliative care across the wider health system. This relates to all individuals and organisations who deliver palliative care as a component of their work, but who are not part of a specialist palliative care team. The groups surveyed were DHB Planning and Funding, aged residential care and primary health organisations.
Dr Grundy says the findings are wide-ranging, with some of the reports structured to include an extensive set of recommendations. “We would encourage readers to talk through these with their teams, as a way of comparing and contrasting their services with others across the South Island. The reports are intended to drive innovation and integration, in the knowledge that palliative care provision for a population requires collaboration across specialist services, secondary care services and all aspects of community care.”
A survey of bereaved people across the South Island (VOICES, Views of Informal Carers – Evaluation of Services) is also currently underway. This is a collaboration between the University of Canterbury and the South Island Alliance, and will provide a rich and valuable information to work with as the way forward is evaluated.
During September and October, a Palliative Care Workstream roadshow will take place across all five South Island DHBs to discuss the survey reports. This will be led by Dr Grundy and supported by PCW facilitator Jane Haughey, and local PCW members. More details will be available soon.
See the summary of findings and reports below.
Summary of finding and next steps (May 2018)
Hospital palliative care (April 2016)
Hospice services (July 2016)
Aged Residential Care (May 2017)
Primary Health Organisations (August 2017)
DHB planning and funding (November 2017, amended March 2018)
Primary Palliative Care Executive Summary (March 2018)
Improving Health Services Through The Consumer Voice
|Marj Allen’s three year term as consumer voice of the PCW has come to an end and the group is looking for a new member.
The consumer voice is an invaluable part of health care planning. Providing feedback on what’s working and what needs to be improved from a patient point-of-view, it’s the consumer experience of the health system that will ensure services are efficient, effective and person-centred.
To help shape and improve health services in the South Island, consumer members contribute to a range of different health committees and groups across the sector. Christchurch woman Marj Allan has been sharing her journey within the health system for many years, following a cancer diagnosis. “After my recovery, I wanted to give something back to the system, so I became a consumer voice for cancer,” she says. “At the time I was living remotely on the West Coast, so I had a different perspective to share and I could see how important it was for cancer patients in the community to be supported, particularly older people or those who don’t have family around them.”
Believing she still had a lot more to offer, Marj joined the South Island Palliative Care Workstream (PCW) as a consumer member in 2014. Operating under the South Island Alliance framework, this group comprises clinical leaders and palliative care service providers, and is committed to improving the quality of palliative care services across the South Island. Marj represents a collective consumer voice and is involved in a range of projects, initiatives, and activities relevant to the work of the PCW group.
Marj is also Chair of the South Island Cancer Consumer Group, which provides a link between the two groups. “This ensures a good connection and strengthens the work being carried out in both cancer and palliative care.” Representing consumers for palliative care in the South Island has been an interesting and enjoyable experience, Marj says. “It’s been a real honour to be a part of this group, and fantastic to see how it’s evolved from when it was established to where it is today, benefitting communities across the South Island. It’s a fantastic opportunity to represent both the patient and their families during the palliative care journey – it’s very important for them both to have a voice.”
Being a consumer voice is about listening to and incorporating the views and priorities of consumers, says Kate Grundy, Chair of the South Island Palliative Care Workstream and Consultant Physician in Palliative Medicine, Canterbury DHB. “It is so important for us as a Workstream to really listen to the consumer, as everything we do should be with the patient at the centre. They are the window into what it’s like to be on the receiving end of care.”
Consumer members for palliative care and hospice generally have had experience in palliative care with a loved one, have been a carer themselves, or have been involved as a volunteer in a community setting, she says. “People come into it in various ways, but the one thing they really need is to have the confidence to speak up. As chair, I must provide a safe place for them to share and question. Their input is hugely valuable and appreciated.”
Marj’s three-year term as the consumer member of the PCW has come to an end, so the group is looking for a new member. If you are interested in applying for the role, visit the Palliative Care page for more information and application form.
South Island Palliative Care Workstream Update
The latest update from the South Island Palliative Care Workstream is available.
Continuing The Palliative Care Conversation
From Stewart Island to Wellington, a wide range of health professionals joined together to discuss a variety of topics on the provision of high quality, consistent palliative care last month.
With representation across the sector covering clinical, management, community and hospital, the second annual South Island Palliative Care Engagement Forum was held at the South Island Alliance Programme Office in Christchurch on July 20. About 40 people joined the forum, with most attending via video conference. Topics on the agenda included ePrescribing, HealthPathways, VOICES (Views of Informal Carers – Evaluation of Services), and the suite of primary palliative care survey reports, which are still in progress. Also discussed was the Te Ara Whakapiri Toolkit, and the Ministry of Health’s Review of Adult Palliative Care Services in New Zealand and Palliative Care Action Plan, which were all released this year.
The forum was presented by the South Island Alliance’s Palliative Care Workstream and positive feedback was received from forum attendees, who appreciated the informative presentations followed by a chance to join in on the discussion. Dr Kate Grundy, Chair of the Palliative Care Workstream and Clinical Director of Integrated Palliative Care Service, led the forum and was one of six high-calibre speakers. Michelle Main, the Ministry of Health’s Palliative Care Programme Manager, also attended the forum and spoke about the work they are undertaking for the sector.