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

Surviving and Thriving in a Time of Change by Dawn Allan

I have always been fascinated by human beings and why we are the way we are.

Does our cultural and family background influence us?

Why do some people believe in God and some don’t?

Why are some people able to talk about death and dying so easily?

Why do people focus on their weaknesses, what about their strengths?

How self aware are we?

Who are we when nobody is looking?

Having emigrated from Ayrshire to South Africa where I spent my childhood and early adult years, I discovered the down side of the school playground because I sounded different.  There were only so many times a 6 year old with an Ayrshire accent wanted to mandatory repeat the word ‘potato’ at the class bullies insistence, and then suffer his disparaging comments,

“…doesn’t she sound weird…say it [potato] again…oh, ja, you’re from ’SCOT-LAND’ hey…”!?!

I remember stifling back tears, wishing I sounded like my peers so he would leave me alone.  When I reflect on this childhood bullying memory, it is mainly laughable now and I quickly adapted by adopting a local accent to blend in.  Life nurtured resilience and I learned when it might be safe to confront a bully wisely, when to ignore them and when to ask for help.

This year I relocated from Shetland to live and work in a place, “Often described as “Scotland in Miniature,” South West Scotland’s Dumfries & Galloway region is characterised by its rich cultural heritage, stunning scenery, sweeping seascapes, towering cliffs, rolling agricultural land, and its wide, wild landscapes”.  Who wouldn’t want to live here?!?  So, what about the people?  I am pleased to say they too are fascinating, warm and welcoming.

The 2017 focus for NHS Dumfries & Galloway is the move for many staff from the current DGRI to the new hospital.  From what I am gathering, this process of change is daunting for some.  If communication is key to all that we offer and provide as health care professionals, part of the way we manage our expectations in preparing to move is to be aware of how we communicate with or about each other as individuals, departments and teams.  Having a person-centred approach should be our modus operandi – our behaviour and communication does not go un-noticed by patients and visitors.  Being a ‘relational person’, I believe our hospitality is as valuable as our clinical / social care, our administration skills or our financial targets.

If a holistic approach cares for the whole person, this includes acknowledging someone’s pain, providing them with pain relief and offering them a cup of tea – all spiritual ‘acts’.  We all deliver spiritual care, what I aim to define is that we as staff do not, ‘go Greek’ i.e. compartmentalise and separate a person into ‘bits’, i.e. age, gender, status, patient, service-user, client, spiritual, religious, physical, mental, psychological, emotional…When in physical pain, the whole of our being is affected.  Judeo-Christian views that –

  • every person is born with worth and dignity
  • every person has the ability to choose between doing good and doing wrong
  • every person has the responsibility to help others in need and the community

Whether the person we are caring for or working alongside has a belief / faith or not, they will have a ‘value system’.  I hope having a VBRP – Values Based Reflective Practice – approach will help all of us as we reflect and hopefully learn from the past in the present, to know how to continue or change best practice, including our communication.  Our motives are based on values we apply every day which will help or harm the people we care for, including ourselves.

To be a hopeful presence is how I sometimes describe my encounters with people.   When we are at our most fragile and vulnerable, we need others we can trust, who will listen with their eyes and ears, who can make us laugh, encourage us when we feel stressed, sick or lonely and offer compassion.  My confidential support includes staff – we are all at different stages in our professional roles and our personal lives.  Before anyone ever declares whether they have a belief / faith or not, it is what we have in common as human beings that is paramount.  Difference is a given, but negative overemphasis on difference marginalises people – companionship and inclusion build bridges.  Sometimes, ‘life happens’ and it is the sudden, unexpected occurrences that affect our health and relationships most.

One of my favourite authors C S Lewis reminds me that a man of such academic, creative gravitas was honestly transparent, he said, “I pray because I can’t help myself.  I pray because I’m helpless.  I pray because the need flows out of me all the time – waking and sleeping.  It doesn’t change God – it changes me.”

Rabbi Harold Kushner’s description speaks into my role, “When you cannot fix what is broken, you can help very profoundly by sitting down and helping someone cry.  A person who is suffering does not want explanation: the person wants consolation.  Not reasons, but reassurance.”

If we as individuals think we do not need each other, we are deluding ourselves.  My faith informs my professional practice, without imposing it on anyone.  If the Son of God relied on twelve disciples, who am I to say I can survive without the support and wise counsel of colleagues?  We are only human and we need each other to ensure NHS Dumfries & Galloway not only survives but thrives today and tomorrow.

Dawn Allan is Spiritual Care Lead Chaplain at NHS Dumfries and Galloway

“This is doing my head in!” by Harriet Oxley

Harriet 1I wonder how often you’ve heard someone say these words. Every day perhaps? Depending on our circumstances the things that provoke each of us are different. As we become more stressed and pressurized it becomes harder to see the way forward clearly. If we go unsupported and problems start to pile up they can start to bring us down.

Staff listening offers one-to-one support that is confidential and non-judgmental. Each person is supported to talk about issues of concern, deepen his or her understanding and rediscover hope. As a result they are enabled to tap into personal strengths and find a way forward if that’s what they need to do. Staff listening is a service offered by the NHS Dumfries and Galloway’s Spiritual Care team.

I recognise that some people are not sure what spiritual care is or what we do. I notice that some people hear the word ‘spiritual’ and imagine everything from ‘religious nut’ to ‘bible basher’. Others wonder why we need spiritual care in the NHS nowadays.

I wonder if it would help to make the distinction between religious and spiritual care. Religious care is given in the context of the shared beliefs, values and rituals of faith communities. Spiritual care, on the other hand, makes no assumption about personal beliefs or lifestyle. In other words, spiritual care is not necessarily religious and many people with no religious beliefs recognise their own need for spiritual care.

Spiritual care recognises that everyone needs to have meaning and purpose in their lives and fostering this promotes resilience and wellbeing. Spiritual care enables people, whether they’re patients, carers, volunteers or staff, to cope with life transitions, such as illness, loss or bereavement, as well as ethical dilemmas and major life decisions.

The Spiritual Care team consists of self-aware and sensitive listeners who have time to be with each individual in their need. Staff listening promotes spiritual wellbeing by offering a safe space for people to explore their concerns and draw strength from their own inner resources and those of supportive people around them. It is available to any member of staff, volunteer or carer within Dumfries and Galloway Health and Social Care. Equality and diversity is important to us and we welcome everyone irrespective of personal beliefs or life circumstances.

Harriet 2So perhaps you’re wondering what happens in staff listening. Firstly I’d like to point out that our role is not to fix problems or give advice. Instead we listen as each person tells his or her story, ask the right questions and offer support and encouragement. For many people telling their story is all they need to do. To have someone listen to the issues they are struggling with is enough to leave them feeling heard and able to carry on.

Sometimes, in talking about the situation, the person hears themselves say what they need to hear and gains insight just from having put their story into words. At other times the person’s story may be very complex, with many different strands. In such situations our role is to help them disentangle some of these strands, to look at them in turn and perhaps identify what some of their options are.

‘I have just realised what I need to do – I have never thought about that before.’

‘I have just heard the answer to my problem in what I have said.’

‘Saying that made me hear and see my own story differently.’

Space to reflect and talk through issues with colleagues has become rare, yet it is often the very thing that makes a difference in how we cope. If something is troubling you or you’re struggling with a particularly difficult situation, maybe it would help to talk in confidence with someone outside your situation. If so, please drop us an email to:

Harriet Oxley

Spiritual Care team