"Appalled and disappointed with lack of communication at Box Hill Hospital."

About: Box Hill Hospital

(as a relative),

In late 2015 my beloved father died in the Intensive Care Unit of Box Hill Hospital. He was in his seventies. He was a husband, a father, a brother, an uncle and a friend. I am sharing my story because I am appalled and disappointed at the lack of communication and overall treatment my family received during Dad’s stay at Box Hill Hospital. I expected more, especially in ICU.

For those of you who have ever experienced having someone you love in ICU you will know the helplessness you feel and the terror at the realisation that someone you love with all your heart and soul could die at any moment. You will know that you look to the doctors and nurses in charge for hope, compassion, support, guidance, answers and reassurance.

Dad had multiple Myeloma that had recently morphed into Acute Plasma Cell Leukaemia. We knew his time was limited but we did not expect him to leave us so soon. He was admitted to Box Hill Hospital 6 days prior and just after midnight 3 days later, I received a call from the ward at Box Hill Hospital to advise me that Dad had taken a turn for the worse and was being admitted to ICU with breathing difficulties. My family and I rushed to the hospital and went straight to ICU but were told he was still in the ward. We then went straight to the ward and saw Dad but were told to meet him in ICU. We waited over two hours outside ICU. My sister rang the bell outside ICU about an hour later to enquire about Dad and we were told - we know you’re there and we’ll come and get you when he arrives. Not once did someone come out to speak to us. So another hour passed before we were ushered into ICU.

When we finally arrived in ICU we were told that Dad had hours to live. Not once did someone sit us down and tell us what was going on. We got mixed messages about his condition and what was wrong.

In the midst of the chaos I need to mention that one of the nurses in charge, Andrew, was fantastic, going out of his way to make my family comfortable, offering to call a priest, bringing us candles in preparation for the priest’s arrival and generally providing as much support as he could. He also went out of his way to find me an iPhone charger. One of my sisters was overseas at the time and was desperate to see our father (on FaceTime) and say goodbye given we’d been told he only had hours to live. My battery was dying so we were desperate to find a charger so she could say goodbye.

As it turned out, Dad held on until Sunday evening thankfully and my sister arrived from overseas and was able to say her goodbyes.

From the early hours of Friday morning until Sunday evening we did our best to make Dad comfortable.

On Sunday morning we finally got an audience with Dad’s fill-in Haematologist, the consultant in charge in ICU, the registrar and some of the nurses. This was at our request and up until then we felt that everyone had given up on us and they were just waiting for my father to die. The consultant in charge discussed Dad’s condition and mentioned that Dad may continue in this state for weeks even though they did mention that his condition was not looking good. I also expressed my concerns about the lack of communication as well as some of the things that had upset me since the morning Dad took his turn for the worse. The consultant acknowledged my feedback and admitted the lack of communication is endemic in the medical profession. While I appreciate their admission, I do not care and it needs to be fixed. No family should have to go through this. You are dealing with real people; real people with feelings; with families – people who have served their community, who are loved and adored. Would you treat your own father like that?

At this point I would like to give feedback about two nurses in particular but I will not name them here. The first told me in no uncertain words on the Friday morning that - the mask will have to come off sooner or later. When he deteriorates, and he will deteriorate, it will have to come off and we won’t resuscitate. I asked them whether my family and I had a say in the matter and they told me we did not. I am not disputing the fact that they were trying to portray the gravity of the situation, what I am angry and frustrated about is:

1. They are not a doctor and at no time did a doctor portray this information to us.

2. Their bedside manner needs improvement.

The second nurse upset me even more. They were the last nurse assigned to my father. All through their shift they hardly went near him – it felt as though they were like - Oh well, he’s dying so why bother. At one point near the end I asked this nurse whether it was almost time to move Dad as up until then the nurses moved his position so he would be more comfortable. They looked at me and said bluntly, with what felt like absolutely no emotion – If I move him he might die. Their comment was very confronting. The nurse then said to me - I don’t know what you’ve been told but he doesn’t have weeks, he has days. They paused and then said - No he doesn’t even have days; he has hours.

Having said that I would like to make special mention of a few exemplary individuals who looked after my father during his stay in ICU. Two people in particular stand out for me and my family – Brenden and Katie. These two people were born to be nurses. They treated my father with so much respect and my family with compassion and care. They did not give us false hope, they gave us the facts but at the same time they did not take away our hope. They were kind and compassionate and I cannot speak highly enough of them. There were many more stars who took care of Dad – and while I can’t remember all their names the ones I do remember are Imogen, Candice, Neil, and one of the registrars, John. And on behalf of my family I thank each of them from the bottom of my heart. They helped us deal a little better with what was already a horrible situation.

After Dad’s passing we received a bereavement pack on our way out. While dad was in ICU we received nothing. For example, it would be good for families to know what to expect while their loved one is in ICU and where to go for support. The Austin Hospital has an entire booklet on what to expect in ICU and it’s readily available on their website.

Overall I am appalled and so disappointed with this treatment and would like to discuss this further with someone at Box Hill Hospital.

Responses

Response from Alan Lilly, Chief Executive, Eastern Health

picture of Alan Lilly

Dear Cruze74,

Thank you so much for providing your feedback on care received in the ICU at Box Hill Hospital. I realise that this would have taken some courage and I am sure would have been most upsetting in the process. Please accept my sincere condolences on your father’s passing. Please also allow me to express my sadness on the basis of what you have outlined in your story. I am deeply saddened by your experience and most disappointed and based on my knowledge of many of the ICU staff, I know they will be too.

Clearly, we have got something very wrong in caring for your father and you can be reassured of my commitment to following this up and responding to the concerns and issues which you have raised. I also note that we did some things well and Andrew, for example, went well beyond the call of duty to assist you with charging your phone so that you could use Face Time. I also note your feedback with regard to Brendan and Katie, Imogen, Candice, Neil and John and I was pleased to read that your sister managed to arrive in time to say her final goodbyes. These are indeed critical and very special moments.

However, I feel that we do need to learn from this tragic sequence of events and I would like to offer you the opportunity to meet with our ICU staff and provide an opportunity for some honest discussion and whilst we need to answer your questions as the priority, I am also keen to ensure that we don’t see a recurrence of this type of situation.

Again, Cruze74, please accept my sincere apologies for letting you down on this occasion. I hope that you will allow us the opportunity to address these issues for you and I would encourage you to provide me with your contact details to alan.lilly@easternhealth.org.au I will respect your decision either way. If you do not wish to discuss this further, I will in any event being sharing your story with the management team of ICU at Box Hill Hospital.

I look forward to hearing from you.

Kind regards, Alan Lilly

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Update posted by Cruze74 (a relative)

Hi again Alan,

I just wanted to let you know that I have just spoken with ICU Director Dr David.

I am really pleased about the changes that have occurred as a result of my feedback and the feedback of others with similar experiences.

There are a few things that Dr David will put in writing for me, but aside from that I am happy with the response I have received.

At this point I would like to thank you wholeheartedly for your dedication to our case and the care and concern you have extended to me and my family.

All the best Alan.

Best regards,

Response from David Plunkett, Chief Executive, Eastern Health We are preparing to make a change

picture of David Plunkett

Dear Cruze74,

Further to your feedback earlier this year, I just wanted to let you know that we are continuing to re-visit the powerful lessons learnt from your family’s experience by sharing your father’s story (de-identified) within ICU nursing and medical meetings, to continue to focus on communication to assist in improvement of the patient and family experience.

I am aware that you have joined our End of Life Care Expert Advisory Committee. We are committed to hearing the voice of our patients and their families and working in partnership to improve the way we provide services. I thank you for volunteering your time for this committee – your contribution is invaluable.

I understand that you have not received a written response from Dr David, who is no longer working at Eastern Health, however I am advised that the program is following this up and you will receive correspondence in due course. My apologies for this oversight on our part.

Thank you again for sharing your story on patient opinion. It has certainly resulted in positive outcomes for future users of the service

Kind regards

David

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Response from David Plunkett, Chief Executive, Eastern Health We have made a change

picture of David Plunkett

Dear Cruze74,

Thank you so much again for providing feedback on your experience. I thought I would provide an update on the changes we have introduced since your feedback in 2015.

We are pleased to let you know that many initiatives have been put into action since you told us about your experience as a family member in ICU. Here are some of the actions we have taken:

We undertake a review of all patient and family feedback/responses as part of the ICU Quality/Review process. We have found that while most responses are complimentary there are a few cases where communication has been lacking and we have got it wrong.

Of note our review has identified suboptimal communication many different levels, eg between (a) staff and patients, (b) staff and families (c) senior and junior medical staff (d) senior specialists/consultants from different units/services when multiple teams are involved and responsible for individual patient care and complex decision making (e) members within the multidisciplinary teams (medical, nursing, allied health, visiting specialists etc.) caring for complex patients. In other words, this is not an isolated case and is not limited to ICU. The general medicine program is commencing a pilot project called “Improving communication between patients/families with health care providers in General Medicine project”. This pilot project is focusing on the delivery of patient-centred care and the ability of clinicians to communicate effectively so that patients are involved in shared decision-making about the plan of care. This pilot project will be evaluated to inform an implementation strategy to improve clinician’s communication at Eastern Health. The objective of this project is to empower treating teams and patients and their families to have meaningful conversations with their treating teams about their values and preferences in relation to their care and treatment. Families or patients with concerns are offered and encouraged to meet with staff and clarify their concerns. All cases with serious complaints are reviewed by senior staff. Results are feedback to bedside staff through (a) weekly nurse meetings (b) weekly medical education sessions with junior medical staff (c) weekly ICU leadership meetings. Communication concerns are discussed at daily handover and planning meetings that occur each morning that involve multidisciplinary team members (senior medical, nursing, social work, pastoral care and allied health staff). Communication training is now a routine component of the Junior Medical Officers (JMO) orientation, training, and teaching programs. These include didactic presentations, communication simulations based on real cases, communication workshops, and access to professional courses, and regular review of JMO progress and development. Inclusion of consumer representatives (patients and family members with real/lived experiences and insights) at several levels: visiting other patients in ICU, membership and input to various committee specifically dealing with ICU issue eg Safety and Quality Cte, hospital and network committees, engagement in strategic planning (such as our Rapid Improvement Event and follow-up in 2017). Recently we asked a consumer representative to visit a patient at the Angliss ICU who had recovered from the same life-threatening illness. The visit was for the patient and probably more importantly for their partner who was quite anxious about leaving ICU and the what life might be at home. As a result of this, the visited patient is keen to also be a consumer representative. We are on the way to establishing a consumer representative for each of the 3 Intensive Care Units. We are nearing completion of a major research project to review the management of patients who have died in ICU. This project includes a review of communication and clinical care provided to ensure this is in line with patient and family wishes. Investigation is currently underway to identify various methods to support communication and support networks for patients and families. Most important is good clinical leadership: development and modelling of high calibre clinical leadership by senior clinicians in the Intensive Care Service. We routinely encourage feedback, and support is offered to all families of patients who experience difficulties such as the one described in this case. The same applies to all families of patients who die in the intensive care ward. These processes involve staff at all three sites where intensive care services are provided (Box Hill, Maroondah, Angliss). This ensures that experiences and learning at one site is passed on to all sites and all staff.

We take feedback seriously and through your experience and those of others the ICU team is constantly reviewing and looking to improve our care and service. I hope you agree that the changes made following learning of your experience demonstrate that.

Thank you and again Cruze74 and kind regards

David

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