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

Improving Patient Flow by Chris Isles

Dave Pedley gave an excellent talk two Wednesdays ago on Tackling Crowding in Emergency Departments, triggered no doubt by the number of times recently we have been running at 100% bed occupancy with patients sitting in chairs in the Emergency Department because there were no free cubicles.

The nightmare scenario for us all as the clock ticks inexorably towards December 2017 is that the same thing happens when our fabulous new hospital opens and the TV cameras, newspapers and journalists begin to salivate at the prospect that something goes wrong (there will be no story to report if the transition to the new hospital goes smoothly and there are no corridor patients).

The chances that something could go wrong are actually quite high and the problem is almost entirely medical by which I mean the large number of frail older people living precariously in the community who fall, become immobile, incontinent or delirious and require at least some form of assessment but often admission to hospital.

The omens are not good.  Dumfries and Galloway has the second highest proportion of people in Scotland who are aged 75+ and living alone.  Our Health Intelligence Unit have shown that despite numerous initiatives and new ways of doing things the Medical Unit would be sailing perilously close to 100% bed occupancy if we moved into the new hospital today. (See me previous blog on the new hospital here)

During his talk Dr Pedley showed a powerful 5 minute video by Musgrove Park Hospital in Somerset entitled Tackling Exit Block ie their hospital’s inability to move patients through ED because of numerous interrelated system failures.  (https://youtube/WX1YwKIkWzA).  Musgrove Park ‘s Top Ten Reasons Why People Cant Leave Hospital were as follows:

  1. Discharge delayed so patient can have lunch
  2. Carer/relative can’t pick them up till after work
  3. Nurses too busy looking after other patients to arrange discharge
  4. Waiting for transport or refusing to leave without free transport
  5. Waiting for pharmacy
  6. Waiting for ward round
  7. Waiting for blood or scan results
  8. Waiting for discharge letters
  9. Packages of care planned for late afternoon/early evening
  10. Patient doesn’t want to go to the assigned bed in community hospital

During discussion a number of solutions to our own recurrent difficulties with patient flow were proposed.  These included tackling all of the above in addition to attempting to educate the public about when and when not to attend ED.  My own view is that this might be as fruitless as King Canute sitting in his throne on the beach and attempting to stop the incoming tide on the grounds that any patient who comes up to ED and is prepared to wait up to 4 hours and possibly more to see a doctor or a nurse must feel they have a very good reason to be there (one often quoted reason being that they could not get an appointment to see their GP).

There were some illuminating moments.  We asked Patsy Pattie whether Dynamic Daily Discharge was still as effective as it had been when it was first rolled out.  She replied that some wards needed support on embedding the process.  Dr Pedley praised staff for their firefighting skills on those occasions when patients were unable to access cubicles in ED which prompted Philip Jones, our chairman, to say that a corporate rather than firefighting response was needed.  Many heads nodded in agreement.

A corporate response might mean fixing lots of little things in order to make patients flow through the system more speedily.  Dynamic Daily Discharge could then become an established part of ward routine rather than an optional extra; the paperwork in the medical assessment area might need to be simplified to allow nurses to move patients into the body of the ward more quickly; a nurse on each ward might be designated to carry the ward phone rather than allow it to ring endlessly in the hope that someone else will pick it up; clinical teams would actively consider how patients might get home;  consider community detox for alcohol withdrawal; patients earmarked for discharge might move to the dayroom unless physically unable to do so; hospital taxis might take people home if relatives or patient transport cannot do so; patients could be issued with a prescription to take to their local pharmacy if new medications are required or go home with immediate discharge letter to follow if not.

To these solutions I would add fully funded Ambulatory Emergency Care and Comprehensive Geriatric Assessment services together with more and better social care and a commitment to fill the hospital with more staff on public holidays (of which there will be four within one month of the new hospital opening).

The Chief Executive of Musgrove Hospital finished her contribution to the Exit Block video by saying ‘we need every single member of staff to understand their responsibility in ensuring patients flow through our hospital so that we can discharge them home as quickly and as safely as possible’.  Who could disagree?

Professor Chris Isles is Sub-dean for Medical Education and is a Locum Acute Physician.

Losing Grace by Robyn Langton

“A grandmother is a little bit parent, a little bit teacher, and a little bit best friend.”

Who remembers that mad feeling of excitement when you were told as a child that you were going to stay with Granny and Papa? As a child growing up, I was very fortunate to have wonderful grandparents around me to support my parents, provide me with unconditional love – and lots of sweeties on the sly. Along the way, as is life, I have lost all of my beloved grandparents, my Granny Grace being the last, saying goodbye at the age of 77. Some people are not lucky enough to know their grandparents, however more and more are able to enjoy them for longer as demography changes and people are living longer. My Granny was incredibly independent, never relying on health or social care apart from the odd trip to her GP and was still going swimming twice a week and ‘raking around’ in her 70’s. Grace was one of life’s treasures, incredibly sweet and kind to everyone around her.

In summer 2010, my Granny began to change and not quite seem herself. Living just up the road from us, she regularly popped in to visit (and secretly do some of my chores Mum had left me) and I distinctly remember one day when she left, she lost her balance on the steps and I watched as she slowly made her way back up the street. Another incident happened when she fell backwards over into the bath (thankfully empty!). These incidents seemed to be happening more and more often and Grace consulted her GP several times; without any diagnosis or medication being prescribed.

It got to the point that my Granny’s loss of vision and mobility was so severe that it made it unsafe for her to be at home. When the family took her up to the hospital to get checked over, Grace was almost blind and needed to use walking sticks. My Granny was admitted to the ward in September. Lying in her hospital bed she was no longer the chatty woman that went out of her way to help everyone else, she was in desperate need of support herself to get changed, move around, go to the toilet, and she had to be fed. A very fit and healthy lady had suddenly turned into a frail, dependent ‘patient’ at DGRI in Dumfries and Galloway. It was terrifying watching the person we knew and loved so much slip away so quickly – we were losing our Grace along the way. Eventually we were told that Grace had developed a neurological condition and they thought this could be something called Creutzfeldt-Jakob disease (CJD) but couldn’t be sure. A specialist team from the National CJD Unit in Edinburgh came down to undertake tests, and confirmed that my Granny had sporadic CJD.  My Granny died less than 4 months after first displaying the symptoms, in November 2010.

Robyn 1

CJD is a rare neurodegenerative condition that affects tissues in the brain, nerves and spinal cord. Despite being the most common form of CJD, sporadic CJD is still very rare, causing 1-2 deaths per million worldwide every year. I always said my Granny was always one in a million.

Symptoms of CJD include:

  • loss of intellect and memory
  • change in personality
  • loss of balance and co-ordination
  • slurred speech
  • visual disturbance and blindness
  • abnormal jerking movements
  • progressive loss of brain function and mobility

It was a difficult and distressing time for the family, as is any serious illness. However, this was made more difficult in the agonising time it took for her diagnosis, and the lack of knowledge around how to manage this condition due to it being so uncommon. This was also not helped by the stigma attached to this disease.

There are various strands of CJD. CJD is caused by an abnormal protein, called prion, which contaminates the nervous system. Variant CJD may have been passed to humans through beef products infected with bovine spongiform encephalopathy (BSE). However, there are four different types of CJD and infection is not always the cause of this condition. For example, the cause of sporadic CJD, which accounts for 85% of all CJD cases (and the type my Granny had) still remains unknown.

The world is an amazing and fascinating place, however it can also be filled with lots of unknowns, and some scary illnesses. We need to make more of the unknowns known; and support the fantastic work of all our world researchers out there spending their days doing exactly this.

Last year, the Brain Research Trust funded two PhD studentships researching CJD and related prion diseases. I want to raise as much awareness of this disease as possible. We had no idea for months what was wrong with Granny, her symptoms began with loss of balance and forgetfulness which quickly turned into a nightmare. Whilst there is no cure for the disease just now I am hoping more research will help come up with some solutions or ways of identifying earlier so people and their families are more supported and informed and can have an agreed care plan in place.

Five years after my Granny died, I decided in November 2015 that I was ready to start talking about the disease and raise awareness amongst health professionals and the general public. Having only ever run as far as 5K, I decided to take the plunge and sign up for the Dumfries Half Marathon. I have been training for the past few months in preparation for the run on Sunday 25th September to run 13.1 miles. It has been a bit of a bumpy ride, with several trips to Physiotherapy, Podiatry and Sports Therapy, however I figure if Grace could swim 50 lengths of Dumfries swimming pool twice a week at 75 years old, this run will be a doddle.

Any support would be greatly appreciated. Thank you.

www.justgiving.com/robyn-langton
Click here for more info http://www.brt.org.uk/creutzfeldt-jakob-disease-cjd

http://www.nhs.uk/Conditions/Creutzfeldt-Jakob-disease/Pages/Introduction.aspx

Robyn 2

Robyn Langton is an Integration Support Officer for NHS Dumfries and Galloway

“One Small Step for Dumfries and Galloway, one giant leap for Scotland” by Wendy Chambers

The occupational therapy mental health service is stepping forward this week and sharing their implementation of the Home Based Memory Rehabilitation (HBMR) programme for people with dementia at a National event in Edinburgh.

The event “Connecting People: Connecting Support” is showcasing occupational therapists contribution to dementia post diagnostic support, with the Home Based Memory Rehab programme centre stage, primed for a roll out across 5 other Health Boards in Scotland in the coming months.

Local occupational therapy staff Wendy Chambers and Alison McKean will be presenting during the morning live link session, and also leading along with Lynda Forrest in the afternoon workshop with the 5 Health Boards. The aim is for consistency of delivery for this evidence based occupational therapy intervention across Scotland, contributing to the developing evidence base and promoting best practice in post diagnostic dementia care

The event is being live-streamed and can be watched again at the following link

  • video3uk.com/actionondementia
  • Click on the EventCast Tab and follow the link called “Connecting People: Connecting Support. Home Based Memory Rehabilitation”

Speakers in the morning also include Mary McGrath, Advanced Clinical Specialist Occupational Therapist from Belfast; current work in Scotland with HBMR is firmly based on Mary’s original research (McGrath and Passmore 2009)

A video of servicer user feedback and opinion of the HBMR programme is also being shown on this day and a link to this can be found at

This work is also being showcased on the ‘Let’s Talk About Dementia’ Blog:

Wendy Chambers is an Occupational Therapy Team Lead at NHS Dumfries and Galloway

 

 

 

 

 

Changes in place of death in Dumfries and Galloway By Prof David Clark

When I first came to work in Dumfries and Galloway, a rural area in the south west of Scotland, I began to explore the local healthcare scene and was told by several people that our region had a high rate of home deaths. Some reported that everyone wishing to die at home was able to do so. One person told me with confidence that the rates of home death were increasing here, against the general pattern elsewhere.

Of course, the researcher in me was interested in such claims and in due course it proved possible, with colleagues,  to conduct a study to shed more light on where people die in south west Scotland. The results of that work have just been published in the journal Palliative Medicine and can be read in full on open access to anyone.

The paper contains a lot of detail and some of it may be open to differing interpretations. But it sheds some light on the various statements made by my informants and is a warning to those who play fast and loose with their claims.

What we found

We examined 19,697 deaths of residents of Dumfries and Galloway occurring over the 11 years from 2000-2010. In that whole period, home deaths averaged 26.5% – above the average for the United Kingdom.

But we also found that the proportion of home deaths was in decline. Fewer people in Dumfries and Galloway died in their own home in 2010 (23.2%) than had done so in 2000 (29.6%).

Now in England and Wales between 2004 and 2010 the proportion of home deaths rose – from 18% to 21%.  But still to a level lower than in south west Scotland.

For me, a fascinating finding of our study was that between 2007 (when new recording procedures were introduced) and 2010 an increasing proportion of deaths occurred in the eight bed specialist palliative care unit of our main acute hospital. The proportion of all deaths in the region that took place here went up from 6% to 11%.

Compare that to a recent increase in England and Wales in the proportion of deaths occurring in hospice: from 4% to 6%.

We also found that where a person dies is in some measure determined by the cause of their death.

People with dementia and those who had experienced a stroke were very unlikely to die at home, and much more likely to do so in a care home. Almost 44% of people dying with heart disease did so at home but an almost equal proportion (41%) died in hospital – something worth investigating further. Most cancer patients (52%) died in hospital but almost 28% died at home.

Where next?

We have shown that the likelihood of dying at home is reducing in Dumfries and Galloway. Elsewhere that trend seems to be ‘bottoming out’.

Will we observe the same thing for the period after 2010? And what would the results be like if we did this study for the whole of Scotland?

Researchers are rarely satisfied with their results. The urge to better explain and extend the range of our studies is ever-present. But findings such as those from this new study in Dumfries and Galloway can upset prevailing assumptions. They give us a chance to look at trends and their causes. And if we are advocating for more specialist palliative care resources they show clear evidence of an increasing workload.

David Clark is Head of the School of Interdisciplinary Studies, University of Glasgow Dumfries Campus and a Wellcome Trust Senior Investigator.

Predictors of place of death in South West Scotland 2000–2010: Retrospective cohort study, Heather Black, Craig Waugh, Rosalia Munoz-Arroyo, Andrew Carnon, Ananda Allan, David Clark, Fiona Graham, and Christopher Isles. Palliative Medicine, 1-8, February 2016 (currently available online until 23 February 2016)

In the media:

(media reports updated until 17 February 2016)

Reproduced from the blog http://endoflifestudies.academicblogs.co.uk/changes-in-place-of-death-in-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.

 

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.’