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

Life after Life by Thalakunte Muniraju

Why should the good things in us stop after death when there is great opportunity for life to continue after life? It is impossible to describe in words the emotional and physical trauma individuals with chronic organ failure experience. I am sure most of you have seen or come across someone whose life has been transformed for the better after organ transplantation.

Kidney failure needing dialysis reduces quality of life and survival significantly. A patient in his/her 30s with kidney failure needing dialysis has a similar chance of having heart disease compared to someone in their 80s without kidney failure. Dialysis replaces some of the functions of kidneys, but not all. Receiving dialysis is almost like having a part-time job; sometimes it can be more than a full-time job if we take into account all the dialysis-associated complications and procedures. To make matters worse, dialysis patients must adhere to lots of dietary and fluid restrictions. A friend of mine once told me that he only started appreciating the taste of water after starting dialysis.

Kidney transplantation is the only treatment which can cure and improve the quality of life and survival in these patients. Yes, kidney transplantation is not without risks and patients have to take lifelong medications to suppress their immune system. But the overall benefits are far superior to being on dialysis. Survival of transplant patients and kidneys has improved significantly – half of the kidneys transplanted from living and deceased donors are still working at 15- and 10-years respectively. One of the immensely satisfying things to see for us as clinicians is to see patients leading a normal life following transplantation.

With the exception of living donation, organ donation is only possible following a sudden, unexpected and most often premature death. We should never lose sight of the families who go through this and should do everything to support them. One of the ways to salvage something positive out of these dreadful events is through organ donation.

Three patients die everyday in the UK waiting for an organ. Over the last 10-years, the number of transplants being performed has increased substantially. Still, a huge gap exists between the numbers of patients active on the list and the number of patients being transplanted (see graphs below). The current UK strategy for organ donation and transplantation, Taking Organ Transplantation to 2020, emphasises the pressing need to reduce family refusal rates. It is disappointing that there has been no improvement in the overall consent (or authorisation) rate in 2014-15. NHS Blood and Transplant continue to devote considerable attention to improving the support that it is giving to families when the possibility of donation is raised.

Muni 1Muni 2On 1st December 2015, Wales became the first UK country to introduce a “soft opt-out” system for organ donation. It will be interesting to see what impact this will have on the number of transplants in Wales in specific and subsequently, the UK as a whole. Earlier this year Scottish government said it would consider bringing forward new legislation on an “opt-out” system for organ donation.

Hopefully one day in the near future we will see an “opt-out” system in whole of UK, for the benefit of our patients with organ failure.

Muni 3Muni 4

 

 

 

 

 

 

Registering online takes less than two minutes. After registration make sure that your family and friends know about your wishes. This is the only way to continuously increase the transplant activity, and give someone gift of life. Please consider giving life after life…

https://www.organdonation.nhs.uk/register-to-donate/

http://nhsbtmediaservices.blob.core.windows.net/organ-donation-assets/pdfs/activity_report_2014_15.pdfb

http://www.bts.org.uk

Dr Thalakunte Muniraju is a Consultant Nephrologist at NHS Dumfries and Galloway

 

 

The art of dying well by Margaret McCartney

Do we want to live as long as modern medicine allows us, or only so long as life is sweet?

MM 1

Death is our only shared destiny, but we are in a new era; it’s not unusual to have 70-year-olds looking after a 90-year-old parent. A few years ago we had to reorganise the shelving in the general practice where I work in order to accommodate the notes of our octogenarians and nonagenarians. In 1917, King George V sent out 24 messages to people having a 100th birthday. In 2011, the Queen sent 9,736.

This is worth celebrating. Just before Christmas, I was languishing in a long queue at the Post Office where a 93- and a 94-year-old were holding court, debating the standards of humour in the greetings cards display to such uproar that the postmistress had to pause to wipe tears of laughter away. Age does not mean a loss of fun, vivacity, or pleasure in living.

But age is still the most potent risk factor for death, and many older people at the end of life have its quality impaired by loneliness and, frankly, too much medicine. If we want good living right up until we die, we should be examining what makes it good — and what stops it being so.

At the heart of the problem is the difficulty in predicting death. There is good evidence that doctors overestimate how long people who are known to be terminally ill will survive: we have libraries stuffed with research papers, but no crystal ball. This matters because medicine is often conflicted over the question of preserving life at the cost of its quality. Treatments in hospital might reduce the size of a cancer, but prevent the patient from going home, where she’d prefer to be. Medication for the heart might cause fatigue or dizziness but give extra weeks or months of life. But if this means less walking and independence, is it worth it?

Death is inevitable, but frequently seen as an inadequacy in medicine or treatment. Harpal Kumar, the chief executive of Cancer Research UK, said on the radio recently that his aim was to ensure that no one died of cancer any more. But we are still going to die, so what are we to die of? Is every death to be fought back with all of medicine’s might, and to be always considered its failure?

Surprisingly, in older people, frailty is a bigger risk factor for death than cancer, organ failure or dementia. Frailty is a relatively new concept in medicine, though William Shakespeare described it well in As You Like It:

the lean and slipper’d pantaloon,
With spectacles on nose and pouch on side,
His youthful hose well sav’d a world too wide
For his shrunk shank; and his big manly voice,
Turning again towards childish treble, pipes
And whistles in his sound

Frailty is often rapidly recognisable: low levels of activity, a loss in muscle mass, weakness, falls and easy tiredness. The months and weeks before death in an older person are frequently characterised by a series of crises, caused by something as seemingly small as a urine infection or a trip. But the background of frailty means less recovery each time, and a slow, or stepwise decline. If ageing is the cause of frailty, how can we treat it? Medicine has moved into a new era of riskfactorology. We are no longer concerned about people who have a disease, but people who have a risk factor for a disease. We search for blood pressure or cholesterol levels which are deemed high enough to then lower, to try to prevent heart attacks or strokes. We look for bone-thinning, in order to prescribe medicines to attempt to strengthen the bones and prevent a fracture; we offer flu vaccination to everyone over the age of 65.

All this results in more medicines being prescribed and taken. This might sound so reasonable that the mechanism GPs work to (monetary carrots for adhering to targets and shameful sticks whipped out by the Care Quality Commission when we fail to reach them) seems OK. But our riskfactorology results are for the risks and benefits for populations, not individuals, and the result is thousands of people being prescribed medication that they will never benefit from.

Take the medications designed to prevent osteoporosis, tablets called bisphosphonates, such as alendronic acid. These are taken by over a million people in the UK, usually once a week. Ideally, they prevent hip fractures or collapses of the spine. Hip fractures in frail older people can precipitate death, and are to be taken seriously. However, these medications usually don’t work. For example, the independent Cochrane Collaboration has found that for women with low bone density, or who have already had a fracture in the spine, long-term use of alendronic acid can cut the risk of hip fracture from two to one in 100. This is only a small reduction, although it can be described as a ‘halving’ of risk.

What about side effects? Some women will get none, others will feel sick and nauseated. Some women dread the day they take the tablet and feel they have to write it off. Some will consider that a price worth paying, others will not.

However, people aged over 65 are on an average of two drugs, and 10 per cent are taking five or more. In medical terms, this is an alarm signal — is this combination of medicines really doing more good than harm? Older people are chronically under-represented in clinical trials. So there might be trial data to show that a drug works pretty well in a 40-year-old — but will it have just the same effect in an 85-year-old? Our kidneys and liver — which metabolise our medication — tend to work less well as we age, meaning that standard doses can become toxic. And the drugs can interact with each other. Our nervous system is partly composed of unconscious nerves, controlling our heart rate, digestive systems and blood pressure. Many drugs have an effect on these nerves — from antidepressants such as trazadone, to medicine for diarrhoea like loperamide, to oxybutynin, for the bladder, and many antihistamines. The effect can be cumulative, risking falls and memory problems.

It’s this constant play of harm versus advantage, pro versus con, that characterises much medicine, taking in Shakespeare’s sixth and, then, seventh stages of life. Frailty is a risk factor for death, but most frail patients will not die that year. As a doctor trying to decide which prescriptions are worthwhile and which are not, I’m also keen that I try to understand what matters to patients. Is this side-effect worth it? Is this medication keeping you well or causing you problems?

Medicine can do great things — joint replacements can add life to years, heart attacks are treated with swift declogging of arteries, HIV can be managed long-term. But life through a medical prism is prone to give a medical answer to social problems. Loneliness is one of the biggest. Up to 16 per cent of our elders describe themselves as lonely. I’ve come across patients where the only conversation they’ve had all week has been with the doctor. People who are lonely are more likely to use NHS services, and loneliness is a risk factor for depression and earlier death, as big a risk factor as obesity or high blood pressure. Research points towards social interaction being protective against memory loss. Good health at the end of life is not just about medicine; it is about social activity and networks.

So where do doctors fit in? Just before Christmas there was a sudden (and, sadly for me, temporary) lull in the demand for appointments. Instead of the usual ten, I could spend 20 minutes with just one patient. I had a joyous couple of days, because I could look away from the computer, relax and listen without the constant narking pressure of running late. Suddenly, there was time to talk about what really mattered. With this illness, what are you thinking about the future? Is there anything that is worrying you? What are you enjoying just now? What do you hope for? Unleashed from the tickbox demands of the contract we GPs work to, general practice is fascinating, uplifting and profound in its humanity. Listen, and people talk.

It’s clear from the research that the vast majority of people with life-limiting conditions want their healthcare professionals to play it straight — most people want honesty. This does not mean that people should be told brutal truths in one unexpected sitting. It does, though, mean that talking about death and what quality of life means — for you — should be an unfolding, commonplace conversation.

This is hard, not just because it can feel awkward or upsetting. But the problem is plain. Medicine has a habit of almost unstoppable escalation. One treatment leads to a side effect, which can lead to another treatment, which can lead to another side effect: we can end up chasing tiny odds of benefit while the problem, staring us in the face, is that death is going to happen at some point no matter what we do. Too much medicine is capable of changing a peaceful death into a medical battleground, a peaceful death surrounded by family at home into a death in the bright lights of intensive care. Stepping off the medical escalator may take courage, not just for patients and families but also for doctors. Until we value a good death as much as we value a good life, we will fail to serve people well at the end.

This article was published in The Spectator on October 24th 2015. The original version can be found at http://www.spectator.co.uk/2015/10/the-art-of-dying-well/

Dr Margaret McCartney is a GP in Glasgow and writes regularly for the BMJ and other publications.

 

A Message from the CMO @CathCalderwood1

I’m delighted to have been asked to contribute an update to the Dghealth blog.

This year has got off to a busy start for me with the launch by all of the four UK CMOs of the consultation on alcohol guidelines for lower-risk drinking, and my first annual report as Chief Medical Officer for Scotland, calling for a debate on Realistic Medicine.

The guidelines advise men and women not to regularly drink more than 14 units a week, spread drinking over three days or more if you drink as much as 14 units a week and if you want to cut down how much you’re drinking. A good way to help achieve this is to have several drink-free days each week. It can be a bit tricky to understand and remember how much alcohol is in drinks, and how this can affect our health. The low risk guidelines can help with this, if you choose to drink. No-one can say that drinking alcohol is absolutely safe, but by sticking within these guidelines, you can lower your risk of harming your health if you drink most weeks. I was pleased that the new guidance also takes account of the harmful effects of binge-drinking, and brings the rest of the UK into line with Scotland by advising women not to drink any alcohol during pregnancy.

Cath 1

One of the ways I try to be accessible is via my blog and Twitter feed – it was interesting to see the comments on twitter around the alcohol guideline launch, ranging from welcoming to “killjoy”. Change is always going to cause a reaction – but since the guidelines are in response to evidence of the risk of alcohol causing cancer the UK CMOs have to get our message across, however difficult that may be, so people can them make their own informed choices.

The reaction to my annual report on Realistic Medicine has been more universally positive, in the media and through feedback on twitter and my blog. The report contains the traditional publication of “health of the nation” issues examining a range of population health surveillance data and outbreaks of disease etc but the key theme is ‘Realistic Medicine’ and what this can mean for the challenges that face doctors as a profession and in healthcare. I launched the report at the Western General Hospital in Edinburgh with Dave Caesar, Consultant in Emergency Medicine, NHS Lothian and Dr Caroline Whitworth, Renal Consultant, Royal Infirmary of Edinburgh.

Cath 2

I followed this up with a discussion about the questions I raise in the report with a group of about 20 doctors from NHS Lothian. This is the beginning of engagement I want to undertake across Scotland to hear views of doctors who are well placed to come up with the answers to how we improve shared decision-making; ensure we deliver person-centred care; reduce unnecessary variation in treatment and outcomes; as well as reduce harm and waste (including over-treatment) for the people doctors treat. My team produced a very helpful infographic setting out these questions and we have a range of materials for anyone in the profession who wants to discuss this among themselves and feedback to me via the clinician survey.

I would welcome feedback from everyone on the report so l can use it to inform health policy. My role and that of my team consisting of the Deputy Chief Medical Officer, Dr Gregor Smith and senior medical officers and speciality advisers is to provide the clinical voice in decision-making. As healthcare professionals we have useful knowledge and expertise to guide policy and our input is vital. I would welcome your input to help us to carry out that role effectively. I can be reached in a number of ways: 

 

Email: cmo@gov.scot

Twitter: @CathCalderwood1 [https://twitter.com/CathCalderwood1]

Blog: http://blogs.scotland.gov.uk/cmo

CMO on LinkedIN

 

Catherine

Time to prepare for our new hospital by Chris Isles

This has been a busy month for the NHS. England has narrowly avoided a 24 hour strike by junior doctors, the difficulties experienced by the Queen Elizabeth Hospital in Glasgow have been laid bare on national television for all to see and Question Time debated passionately whether the NHS would fail this winter. Locally, Katy Lewis, our finance director, told a packed audience at our Wednesday Clinical Meeting of the financial difficulties faced by our Health Board while Ewan Bell, Associate Medical Director, wrote a blog about Prioritising Health Care and the chairman of our Medical Staff Committee drew our attention to Audit Scotland’s report on the state of the NHS in Scotland 2015.

Did I hear/listen to/read them all correctly? Can it really be true that the fifth largest economy in the world cannot afford to provide safe, high quality, emergency health care that is free at the point of delivery? 

Let’s start locally. Unless I am very much mistaken we have two major challenges in the run up to our new hospital opening in December 2017. We desperately need to avoid the scenes in Glasgow of ambulances queuing outside A&E and trolleys stacking inside A&E and equally we need to ensure that there is sufficient social care for our frail elderly patients when they go home from hospital. The challenge is likely to be greater for Dumfries and Galloway which has the second highest proportion of people in Scotland who are aged 75+ and living alone.

Chris 1

Katy Lewis spoke of the need for transformative change (aka doing things differently). Who could possibly disagree? If we carry on as we are doing now then the tidal wave of unscheduled medical admissions will cause our new hospital to silt up on the day it opens.  This is the conclusion I have drawn after analysing data provided by our own Health Intelligence Unit (the figure below shows the medical unit is sailing perilously close to 100% bed occupancy) and it is the nightmare scenario we must all be dreading. It should surely be concentrating everyone’s minds. If we get this wrong it won’t just be the local newspaper that will have a field day.

Chris 3As it happens we have been working on ways of doing things differently and have identified two possible solutions: Ambulatory Emergency Care (which does what it says on the tin) and Comprehensive Geriatric Assessment (see below for definition). We must also ensure that we staff the new Combined Assessment Unit adequately. Both AEC and CGA will require investment if they are to be part of the organisation’s response to an impending beds crisis.     Other hospitals in Scotland have already embraced AEC and CGA and there is published evidence to support the view that these examples of transformative change will reduce bed occupancy. Has anyone come up with a better idea?

Equally if we are to keep that new hospital flowing we must invest in patient transport and community support services, particularly social care teams, providers of equipment, community nurses and carers.   The unintended consequence of preventive medicine is that we have more frail elderly people to look after than ever before. Their numbers appear to be increasing as the number of carers available to look after them decreases.  It can surely come as no surprise to learn that carers are in short supply when some are only paid £6.70 per hour (even less than this when we don’t pay mileage or travel time between visits). Compare this to a consultant physician on £36-44 per hour and the eye watering sums of up to £120 per hour we spend on some of our locums. The enormous difference between carer and locum salaries simply has to be addressed.  

Audit Scotland say that ‘significant pressures on the NHS are affecting its ability to make progress with long-term plans to change how services are delivered.’ The title of Katy Lewis’ presentation was ‘Austerity or Bust’.  Ewan Bell wants us to acknowledge that ‘we can’t continue to provide the current range of interventions and services, if we want a sustainable NHS for the future.’ I personally believe that the 5th largest economy in the world could afford to provide high quality emergency care as well as batteries for hearing aids and palliative chemotherapy for the frail elderly (if that is what they really want), but if I am wrong then surely the batteries and the chemo must go.

Chris Isles is a ‘semi-retired’ Consultant Physician

Comprehensive Geriatric Assessment: ‘a multidimensional and usually interdisciplinary diagnostic process designed to determine a frail older person’s medical conditions, mental health, functional capacity and social circumstances. The purpose is to plan and carry out a holistic plan for treatment, rehabilitation support and long term follow up.’

Hidden eKIS by @kendonaldson

I took a phone call from a patient’s son some months ago. His Dad, Edward, had recently spent 24 hours in our hospital and whilst all members of staff had been kind and helpful he had a few issues he wished to discuss with me. Edward is 83. He had a heart attack 3 weeks ago and has ongoing chest pains. He has Stage 4 Chronic Kidney Disease (about 20% function) and leukaemia. Sadly this last is not amenable to any treatment.

In short Edward has multiple long term conditions and is dying from his leukaemia. He still has a reasonable quality of life and, with his family, has discussed clearly what his wishes for the future are. His GP has entered all of this into his eKIS or Electronic Key Information Summary which can be accessed by all healthcare professionals though the ECS, Electronic care Summary.

eKIS

So when Edward got sudden onset severe chest pain last week the sequence of events was a surprise to him and his family. Paramedics were called and when they arrived they did an ECG. They then proceeded to fax this to the Golden Jubilee Hospital in Glasgow and discuss his case with the team there. All the time they did this Edward’s son was quietly explaining that this was not necessary, his Dad did not want this level of intervention and that this detail was all available on eKIS. The paramedics had not heard of, and were unsure how to access, eKIS. They apologised for this and took Edward to Dumfries. At least he did not have to go to Glasgow!

On arrival on the Emergency Department the same thing happened. Nobody knew what eKIS was and how to access it. I’m afraid this was replicated in the medical assessment unit. The following day, after Edward had been assessed, he was deemed fit for discharge – a blood transfusion had sorted his anaemia and angina. The first the family knew was when Edward phoned them to tell them. “And” he added “I can now drive!” He was delighted as driving is very important to him.

When Edward’s son arrived, a little surprised and anxious, he discovered that the team, who still had not accessed the eKIS, did not know that Edward had had a heart attack 3 weeks prior and hence couldn’t drive, had not contacted the palliative care team (outlined in eKIS on any admission) and had not really thought through his discharge. “Its not very Holistic” was his understated comment to me. It all got sorted and Edward got home (although a little aggrieved that he couldn’t in fact drive) and neither he nor his family wish to complain but they want to understand why eKIS seems to be a mystery to the Scottish Ambulance Service and most of secondary care.

So what is eKIS? If you click here you will get access to a useful ‘FAQs” about eKIS. You can also read Neil Kellys blog “The KIS of Life”, published on the 14th of February 2014, here. Very simply eKIS is an electronic handover. GPs, in consultation with patients and their families, can enter details about DNACPR, treatment escalation and goals and priorities for the future. The idea is to prevent things like unnecessary trips to Glasgow or, if arriving at the ED in a collapsed state, CTs or endoscopies or trips to theatre. Basically it’s an attempt to communicate a patients wishes to all who care for them. Not much use though if no-one looks at it.

Its important for us all to be aware of eKIS. Not just those of us at the front door. If I review a patient in a clinic or on a ward round and we discuss issues about the future and decisions are made then I should communicate this to the GP and ask for it to be included on their eKIS. I confess I am not very good at this but hope that this story will significantly improve my communication efforts. I must also confess that I did not have a password for ECS when I heard this story but I have remedied that.

It’s almost a daily mantra in my life – “it’s all about communication”. So many small (and not so small!) things go wrong because of poor communication. eKIS is an excellent tool aimed at reducing communication errors. Let’s not be like Peter Pan and keep it hidden, let’s use it.

Postscript: Sadly, since writing this blog, Edward has died. He had a number of admissions to hospital following the one outlined above and had similar problems with communication however died peacefully in the Alexandra Unit.

Ken Donaldson is a Consultant Nephrologist and Associate Medical Director at NHS Dumfries and Galloway

Leadership in a rewarding, complex and demanding world by Paul Gray (@PAG1962)

The people we serve – the people who live in Scotland, and visitors too – have high expectations of us. And so they should. We operate in a complex and demanding environment, but NHS Scotland is a successful organisation, delivering to high standards of timeliness and quality, and always seeking to improve. The people I meet work day and night, every day of the year, to deliver compassionate care, and whole range of ancillary and supporting services from health science to finance to laundry. And the rewards of speaking to someone whom we have been able to help, who expresses their thanks and wants to emphasise how much they appreciate the care they have received, can’t really be quantified.

Some facts and figures might help. What are we actually delivering each year, with a workforce of over 150,000, and a budget of £12bn, serving a population of 5,295,000?

  • Over 24 million GP and practice nurse consultations
  • Over 450,000 acute day case procedures
  • Over 1 million acute inpatient procedures
  • Over 1.6 million A&E attendances
  • Over 4.6 million outpatient attendances

And we have over 4.7 million patients registered with an NHS dentist, and real progress on improving oral health in children through the Childsmile programme. Pharmacy is developing too, with services being introduced including Minor Ailment Service (MAS), Public Health Service (PHS), Acute Medication Service (AMS) and Chronic Medication Service (CMS).

We’ve also made considerable and measurable progress on patient safety through the internationally recognised Scottish Patient Safety Programme. Our most recent data show a 16.1% reduction in Hospital Standardised Mortality Ratios since the implementation of the Scottish Patient Safety Programme in 2008; and cases of C.Diff in patients aged 65 and over are at their lowest level since monitoring began.

We are integrating health and social care, so that more people can be supported to stay at home, or in a homely setting – some of whom might be quite unwell, with complex conditions. That means different ways of working, with a range of partner organisations, while maintaining our focus on safe, person centred, effective care. And Sir Lewis Ritchie is leading a review of Primary Care out of hours services, which I am sure will offer some important recommendations on the way we structure and provide unscheduled care. The demographic trends we face are well known to us – we do have an aging population, with increasingly complex health conditions; and there is clear evidence that people generally have better outcomes, and are happier, when they can be cared for at home. Indeed, it’s worth remembering that although there is clearly pressure on General Practice, 87% of patients say that the overall care provided by their GP surgery is good or excellent.

When people do need to come to hospital, we work hard to treat them within the standards we have set, whether that’s to see and treat 95% of people within 4 hours of attending an Emergency Department, or to deliver treatment within our 12 week Treatment Time Guarantee. We’ve made considerable progress on getting to the 95% A&E target across Scotland and I’m grateful for that – but I do know that there are peaks in demand, and that patients are tending to present with more serious and complex conditions. And I know that some specialties are finding recruitment tough, which adds to pressure, but we should also remember that 89% of Scottish inpatients say overall care and treatment was good or excellent – which is highest figure since surveying inpatients began in 2010.

We continue to look critically at ourselves, through a combination of internal assessment and governance, and external assessment through Healthcare Improvement Scotland, and Health Environment Inspections. We don’t pretend that we always get it right, and when we don’t, we act systematically to understand the issues and to implement the changes we need to make with purpose and commitment. And we learn too from reports from elsewhere, like the recent report on maternity and neonatal services in Morecambe Bay, to which our Chief Medical Officer, Catherine Calderwood, contributed, and earlier reports such as those on Mid Staffordshire, including the report “A promise to learn – a commitment to act” to which our National Clinical Director for Healthcare Quality, Jason Leitch, also contributed.

Paul Gray 3So what does this mean for leadership in the face of complexity and increasing demand? What does it mean for leadership when often the external narrative – whether in print, broadcast or social media – focuses on problems, and gives less recognition to the things that are going well or improving? I offer the following suggestions. It’s drawn from my own experience of the things that have worked for me, so in that sense it’s personal. But I hope that it prompts you to think and reflect, or to have a conversation with someone. If it did, that would be great.

  • Ask yourself if you can describe what you do, and the outcomes you need to achieve, simply and clearly in a few sentences. If you can do that, it helps you and those around you to understand how they fit in to this complex world.
  • Remind yourselves and those around you of what we do well. Take time to recognise success and to praise a job well done.
  •  Build on what we have – almost all of the people I meet are proud of what they do, and want to do it better.
  •  Remember that leadership is about proactive actions, not job titles. Some of the best examples of leadership I have seen include:
  •  the porter who realised that a patient was upset, spoke to her about how she was feeling, made the staff on the ward aware, and got her a cup of tea. In her words, “He turned my day right round”;
  • the receptionist who realised from the questions asked by visitors that the signage somewhere in the hospital was misleading, went and found the misleading sign, wrote out some better wording and gave it to her colleagues in Estates.
  •  Be open to feedback. Seek it out – and don’t be afraid to reflect on what you hear. Don’t be afraid of external scrutiny either. It can be tough, even painful at times, but better to learn, improve and grow than to stagnate and provide a service that is less good than it could be, or to put patients at risk.
  •  Learn all the time. Encourage and support others to learn. Learn from the best, as well as learning from what went wrong.
  •  Have honest conversations. Don’t let issues fester until they create a real problem. Prepare for these conversations. Good conversations don’t often happen by accident.
  •  If there is an issue or a problem, describe it specifically, and think carefully about the best way to tackle it. Ask yourself if there’s a contribution you could make to the solution.
  •  Uphold the core values of the NHS. If you see or experience inappropriate behaviour, such as bullying or discrimination, speak up, or seek help to address the issue. Don’t let it slide, or suffer in silence.
  •  Think about what the complexity and demands mean for the people in your teams. Acknowledge the situation when things are difficult, or the going is tough. People appreciate honesty, and see through hyperbole.
  •  Ask people for their ideas about how best to tackle problems. They will have some amazing ideas – I promise you!
  •  Leaders take advice and ask for help. They know that they don’t know everything. They recognise and value that expertise that others have. So don’t become isolated, especially when times are tough.
  •  Involve others in decisions – especially in decisions that are about them, or affect them in some way.
  •  If you’re wrong, say so, and apologise. Be transparent. It’s not weakness to admit a fault or a mistake.
  •  Understand the people who work with you, for you and around you – including people who work in different organisations, who might have a different governance context, face a different set of pressures or demands, and use different language from that used in the NHS. They will appreciate that, and if you understand people and their motivations, it’s far easier to be influential. People are far more likely to listen to you if they know that you understand their perspective.
  •  Be someone who offers more often than they ask.
  •  Be someone who gives credit to others, and doesn’t seek it for themselves.
  •  Be persistent and methodical – if something is right, don’t be deflected by setbacks and criticism. If you have considered a course of action carefully, listened to advice, and considered the evidence, follow it through. In a complex world, people value leaders who keep a steady course, and don’t chop and change every day. However, if the context or the evidence changes, review your course of action. Persistence in the face of adversity is good leadership. Dogged pursuit of an outmoded idea isn’t.
  •  Look after yourself. Build and develop networks of people you can consult and talk to when the going gets tough. Take time off, and take a bit of exercise. Make time for family, friends, and things you enjoy outside work. Easy to say, I know – but we do need to restore our energy and keep our perspective. We give our best when we are at our best.

Paul Gray 1And finally – a big thank you from me. I am both proud and humbled to be associated with NHS Scotland. I am proud of the work we do, and of the people who do it. We have a great privilege to serve patients, their families and their carers, and a strong and shared commitment to do it well.

 

Paul Gray is Chief Executive Officer for NHS Scotland and Director General Health and Social Care, Scottish Government.