How to make a good death by Justine McCuaig

My Mum died on June 6th 2017 at 11 45pm at home asleep beside my Father while he held her tight.

My overwhelming and lasting memory is of going up to offer Dad yet another cup of tea, (my family home by this time had become like a scene from Eastenders with endless tea becoming a cure all for our woes) and finding them both asleep in front of the telly, holding hands, as if it were any other night in their lives together. By this point, knowing mum was soon to leave us, I chose a whisky over tea while my sister drank Mum’s Tia Maria and we laughed at our naughtiness downstairs.

We had been caring for Mum for 4 months at home. She had been diagnosed with idiopathic pulmonary fibrosis a few years before and her lungs progressively stiffened up despite her objections and indignation at the condition. Everything else was in perfect working order!

Mum was very pragmatic about her diagnosis and we often talked about its progression together with and without my Father. I asked her when her condition worsened if she thought my Dad had “got it” and understood that she had terminal disease and was not going to recover. The next day I visited and she said “yes he’s got it….I sat him down and told him that I wanted buried in the garden and listed who I didn’t bloody want coming to the funeral  so you don’t need to worry about that anymore!”

Although as a family we liked our privacy from the outside world, we were not particularly shy or private people at home and regularly discussed all manner of things and shared experiences. No topics were ever out of bounds for us and I had the privilege of being raised by tolerant humanitarians with a good sense of humour and a love of dialogue, music and life. We have always been able to talk about the big things with ease, disease, mental illness, romantic woes, religion and politics but struggled with the smaller things and general displays of affection. We loved truly and where truly loved but it was unspoken generally and wrapped up with rather woolly “oh you knows”

Cuddling was not a regular thing either (for no good reason other than we didn’t really do it much) This physical distance completely disappeared when I began to nurse my Mum and provide her with regular personal care. I was more unsure about how I would feel about this than how she would feel about it even though as a nurse I was simply using the tools of my trade.  To my delight caring for Mum (and Dad) was one of the most wonderful experiences I have ever had.  The physical closeness and honesty was liberating for us both. We had so many laughs (normally about things we really shouldn’t laugh about!) Gift giving changed and although a commode wasn’t everyone’s idea of a great birthday present, my Mum loved it, especially with the balloon attached.

To be able to wash my Mum, do her hair, paint her nails all the time chatting about this and that with up to 5 grandchildren lying alongside her at “Granddads side “ was a unique shared experience which we all enjoyed up to the last week of her life. Grandchildren came and went as it suited them without obligation and new routines developed for us all which were played out wholly to our tune. Nail painting changed to pressure care and symptom control but there were no restrictions on visiting, no alien environment or hospital smells, no distance to travel, no reduction in privacy or dignity.

Just home – where the heart is, and where sitting on the bed is actively encouraged!

Of course we couldn’t do this without support. It was great that I was able to use my nurse’s tool box to be my family’s advocate, to explain things lost in translation and to explore mums options. However it was the cohesiveness of our systems, the excellent communication between teams and professionals actively hearing what the patient aspired to and facilitating those aspirations that really worked for my family and resulted in such a good death for my Mother

NHS Dumfries and Galloway has the most outstanding staff members across all disciplines. With thier input we can successfully choose our own package of care and be fully supported in that choice. Anticipatory care planning and social care integration have the potential to really transform the patient journey and is not something to be afraid of but rather to embrace.

 However all of these services need to be heavily invested in to meet the expected demand from   an aging population. Without continued investment and service development, NHS Dumfries and Galloway will not be able to fulfil this ambition and enjoy the success that my family had.

Mum was admitted to DGRI 3 months before she died as an emergency admission and was discharged from ward 7 with a complete package of palliative care and specialist community respiratory support within 32 hours.  All of her drugs and letters were ready at our agreed   discharge time, the domiciliary oxygen was arranged and delivered and referrals completed for the McMillan, Marie Curie Nursing services and Community Respiratory Specialist Care.  Her DNR was signed and she waved it under the nose of anyone who was even vaguely interested in reading it. It remained pride of place on the bedside dresser as it was very important to her that her intentions were known. Everything my Mum did was delivered with humour and even this got a comedy slant!

The Kirkcudbright District Nurses introduced themselves and ensured that their door was kept fully open for when we needed their help and support. They responded promptly to any requests and where always available at the end of the phone to discuss Mums needs as they arose. Our Specialist Respiratory Nurse visited regularly.  When Mum developed a chest infection he promptly liaised with the consultant from our dining room relaying Mums reluctance to be admitted but advocating   the need for her to receive appropriate treatment which could prevent her condition worsening. Although her condition was terminal   there were still things that could be done to minimise her symptoms and prolong the length of her wellbeing. Mum agreed that if things got rapidly worse she would potentially consider IV therapy in hospital but would initially hedge her bets with tablets, lots of tea and nebulisers. She started her antibiotics orally that afternoon and recovered and remained well   long enough to see her beloved swallows   return   from Africa to nest in the garage, enjoy the spring flowers from the garden and support the children through their exams.

The Occupational Therapist ensured Mum had all of the equipment she needed when she needed it. If a piece of kit was ordered it was generally   installed within 24 hours. The Equipment Delivery Staff ensured that we knew exactly how to use it after they had installed it and answered all questions fully and in a voice loud enough for my deaf Dad to hear! They ensured he knew who to contact in the event of any problems. Mum had everything she needed, a bath chair, a stair lift, a stand aid, a pressure bed.  Visiting relatives from the Deep South stood with mouths wide open in disbelief at the care and support my family were receiving and began to seriously consider relocation. After Mums death the equipment was collected promptly but respectfully and was almost symbolic of starting life without her.

We did need the District Nurse’s help more regularly in the days running up to her death and because they had developed a slow growing respectful relationship with my family they were welcomed in like old friends.  They encouraged me to be Justine the daughter rather than Justine the nurse which was invaluable advice. They looked after us all, and talked us through every stage or change in Mum’s condition. Most importantly Mum thought they were great and that is, of course because, they were.  She was so interested in people and life and living that she became just as invested in how they were doing as they were in her. This was especially true of the student who approached and completed her finals during mums care. She told Mum when she   successfully passed as she knew it was important to her to know despite Mums condition rendering her uncommunicative at that point.

However we all knew she was dead chuffed!

Mum received reflexology   and head and hand massage in her bedroom as part of her palliative care package which was a new experience for her and one she really appreciated. What she enjoyed as much as   the treatment was her was that she had another person to communicate with and to learn from. She loved engaging with people more than anything. It gave us all something to talk about too. Even then life remained interesting with new experiences to share.

When Mums condition deteriorated to the point of suffering the District Nurses and GP promptly began her syringe driver to minimise her symptoms. I had discussed this often and in detail when Mum asked about “what next” and she fully understood that when her symptoms were controlled this way, she would be less awake and aware. She made a very informed choice when the GP prescribed it and her consent made me feel content with that course of action. She had had enough. Any other GP may have been phased when she asked if he was “putting her down,” especially when after administering an injection she said “No, no I’ve changed my mind” with a wicked twinkle in her eye!” However Mums GP knew her well and knew that with her humour she was trying to make a difficult job easier for him.

The Marie Curie nurses would phone regularly to see if we needed help over night which was very comforting. In the end the nurses attended the family home twice. Once to administer breakthrough medication in the wee small hours on the day the syringe driver was started (all the way from Dumfries – a round trip of 60 miles) and the following night at 10pm for their inaugural sleep over. Mum died shortly before midnight that night and Dad then made the long walk to the spare bedroom to ask our guest to confirm that she had gone.  Having her there at that time was invaluable and over the next few hours we all chatted and laughed and cried while we waited for a registered nurse to certify Mums death.  The care and support we all received that night was beyond excellent . Mum stayed the night, there was no rush for her to go anywhere and we all spent time with her before she left us mid morning. Downstairs my sister and I repeatedly heard my Dad’s footsteps as he came and went into their bedroom to check that she was really gone.

And she had gone,  Mrs T had left the building. Although we were (and are) devastated we have all reflected our relief that she had suffered so little in the end and that she died where she wanted surrounded by the people she loved . Knowing this has filled our sad hearts with a warm feeling knowing we did right by her and in time this will be a great comfort to us.

Janice M 1

Justine’s Mum and Dad on Crosby Beach 

Justine McCuaig is a Health protection Nurse Specialist at NHS Dumfries and Galloway

Tour de Finance by Jeff Ace

This summer, unlike the many thousands of fellow Welsh folk heading south to France for one of our regular appearances in a major football tournament, I decided to head west, then east, then sort of north east. Together with our Finance Director, Katy Lewis, I recently undertook a tour of the region to try to talk directly to as many staff as possible about the challenges we were facing and to hear first hand their experiences and ideas for improvement.

In three days we travelled over 400 miles, met over 400 staff and heard from nurses, AHPs, domestics, GPs, consultants and others on issues ranging as wide as the region itself. At a number of the meetings, it was great to see social work staff in attendance, reflecting our ever closer working relationships.

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I asked Katy to open each session with a presentation on the financial situation – my thinking being that pretty much anything I then said would come as light relief. The 2016/17 numbers are grim and substantially worse than anything we’ve faced up until now. In summary, we estimate our costs will increase by around £16.5M in the year (largely driven by drug cost increases and pay / price inflation) whilst the increase in our allocation for health services is around £3.6M. The gap between these figures of about £13M (or 5%ish of our running costs) will have to be found from efficiency savings. This would be a tough ask at the best of times but, as most of you will be well aware, it comes after four years of delivering large annual efficiency savings targets.
And of course the financial problem does not sit in isolation. In each of the discussions across the region we heard of pressures caused by difficulties in attracting staff or by increased service demand driven by an ageing population. At times it felt as though we were describing a perfect storm of crises in money, recruitment and demography that threatened to overwhelm us as surely as Storm Frank had submerged parts of Dumfries.

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But just as the pub in this picture was open for business only two days later (it felt longer), things often brightened up pretty quickly in a lot of our discussions. The staff that we met were keen to highlight potential solutions, things that could change services for the better and stand up to our triple challenge.
We’re going to write up the key points raised and create a plan for delivery but some of the common themes were;

  • The right I.T. can transform the way teams work, but we need to make it connect faster and more reliably across the region.
  • We need to get far better at sharing appropriate information between health, social work and third sector colleagues.
  • We need to be quicker at admitting that some vacancies won’t be filled and to redesign and retrain teams to provide services differently.
  • Local teams need to be empowered to make locally appropriate decisions and as much resource as possible needs to be devolved to operational levels.
  • Coordinated support to teams around improvement techniques and methodologies would be helpful.
  • We need to work more closely with carers and families.
  • We need to celebrate team successes and better spread their ideas and learning.

It’s also important to remember that we’re not on our own in trying to work our way through the financial, demographic and recruitment problems. In our meetings we highlighted some of the huge amount of work ongoing at national and regional level at the moment to try to identify high quality and more sustainable models of service delivery across Scotland. Two particular strands of work have the potential to help us transform the landscape;

  • The National Clinical Strategy (written by Angus Cameron, our Medical Director) sets out a clear direction for closer working between Health Boards aimed at improving safety and effectiveness of care within their wider region.
  • The Chief Medical Officer’s work on ‘Realistic Medicine’ points to how genuinely person centred care can lead to better patent outcomes whilst reducing waste and unnecessary expenditure.

So, both locally and nationally, there are grounds for cautious optimism that we can come through these uniquely challenging times in a way that allows our teams to continue to deliver excellent health and care services for our population. It is clear though that to succeed in this, the pace of change around redesign of service models and ways of working will have to be dramatic. Whilst there’ll be a few giant leaps (it’s just over a year until we receive the keys to our new acute hospital…) most of this change will be smaller scale and driven by the local teams that we talked with on our regional tour. Our success will depend on how well we support these teams and ensure they have the skills and confidence to adapt their services in ways that allow us to deal with the financial, demographic and recruitment complexities.
Thanks to everyone who came along to speak to us on our tour.

Jeff Ace is the Chief Executive Officer for NHS Dumfries and Galloway