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

Let’s insist on the possible by Valerie Douglas

Many things in life are complicated, require great debate and despite huge resources are not guaranteed to be successful in practice. There are other things which are simple to understand, can easily be implemented and immediately make a difference to improve lives or in some cases save lives. You only have to think of the meaningful campaign to change the care of people with a diagnosis of dementia led by Tommy Whitelaw (Tommy Whitelaw @tommyNTour). It makes sense and it hits you in the heart. As a professional you cannot listen to Tommy talk about caring for his mum and withhold your support for this campaign. His mum is your mum.

Another example is Kate Grainger’s inspirational campaign (#hellomynameis). This focuses right in on the doctor/patient relationship. It goes further than just making us think more about face to face contact with patients who may feel vulnerable, distressed and in alien surroundings. It asks us to look at our practice on a basic level, to say our name aloud, on every contact. At one point this patient was Kate Grainger but the patient could be any one of us.

Last November an important, widely supported campaign for the mandatory teaching of Cardiopulminory Resuscitation (CPR) to schoolchildren was unsuccessful. This Emergency Bill was opposed despite irrefutable evidence that it saves lives. In Norway it has been compulsory for schoolchildren to be taught CPR since 1961 and survival rates are double what they are in the UK. As out-of-hospital cardiac arrest is the commonest life-threatening emergency in the UK so I thought this campaign was bound to be fully supported and unchallenged. You can imagine my disappointment.

I felt at a loss about what to do next, yet felt there had to be a ‘next’. To increase survival rates of cardiac arrest the immediate action of bystanders is crucial. Personally I have carried out CPR three times, twice in a hospital setting and once at a family event. A day of laughter and pleasure turned into tragedy. Event though, as a nurse, I’m aware that the outcome from CPR is variable for a myriad of reasons, I was left affected by this last experience. Then a doctor said to me, “If I had a cardiac arrest I would want someone to have a go.” I am glad I have been taught CPR and am able to ‘have a go’, otherwise the most I could have done that night would have been to phone an ambulance instead of giving a friend a chance of life.

What could I do now? I decided to put together a resolution to RCN Congress 2016 calling on governments to mandate the teaching of CPR to schoolchildren (the remit of the Emergency Bill had been wider, encompassing all kinds of First Aid). The resolution was accepted and I presented this in June this year.

There were wide ranging contributions to the debate. Personal stories were shared about children delivering CPR successfully. A delegate told us about a situation where his 27 year old teammate collapsed during a game of football. 23 players including the referee were there and nobody knew how to do CPR; this man died. He went on to describe a more recent experience when an instructor was brought in to teach CPR to the junior football team. Within 10 minutes they were doing it perfectly.
Some delegates expressed concern about the effect on children if they delivered CPR and it was unsuccessful. Others answered this by saying: remove the fear, teach them young. The evidence is there. Someone else highlighted again that encouraging CPR lessons in schools as an add option is not enough; teaching needs to be a requirement so that there is no national disparity. Kate Ashton made a very acute observation at Congress:
“If we can educate youngsters in schools about sex education and creating life then surely we can educate them about saving lives.”

Every year an estimated 60 000 out of hospital cardiac arrests occur in the UK (BMJ 2013;347:f4800) It could happen to any one of us. What can you do?
Write to your local MP and express your support for the campaign to mandate teaching of CPR.
Become a local First Responder.
Find out if your town/village has a defibrillator and where it is kept.
Ask your school if the teaching of CPR is on the curriculum.
Let’s insist on the possible.

Valerie Douglas is a Staff Nurse in Mental Health at Midpark Hospital, NHS Dumfries and Galloway

“Going that extra mile” by Sharon Shaw

Patient Centred Care

Being caring and compassionate is an unique talent and sometimes sadly often gets forgotten about and falls by the wayside. We are all human beings and sometimes we all need to take a step back and grasp how valuable our lives are and that of loved ones.

I want to share my story. This is the first time I have written a blog, so please be “patient” with me.

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In November 2015 I started my new job in clinical education. I was excited and yet in a way I wanted to prove to myself and others how valuable education is in this forever changing healthcare environment.

Approximately 3 weeks into my new role, the Respiratory Team contacted me concerning a patient with a complex condition. It was a 59 year old male who had severe emphysema and required an Under Water Sealed Drain (UWSD) to try and reinflate his left lung. The damage was so severe it became evident that the UWSD could not be removed or his lung would continually, spontaneously collapse.

“IT WAS HIS LIFE LINE”.

I walked into the side room in Ward 12 to introduce myself. With hos blue eyes he gazed up at me looking slightly anxious. Giving him a good firm handshake, I smiled and said

“Hello John, my name is Sharon”

I’m a great believer in “non-verbals” as it delivers communication and initially builds upon a trusting relationship. And indeed it did as from then on it had a huge impact.

As my father always said…

“Sharon a good solid handshake goes a long way”.

John was palliative. He had not long retired and to get devastating news about his diagnosis and outcome was so sad. His ultimate wish was to get back home to spend the rest of his short life left with his beloved family.

sharon-2I made a point of seeing John everyday in Dumfries and Galloway Royal Infirmary. It was essential to build up that relationship. During the 2 weeks I delivered education on how to care for a patient with an UWSD. Approximately 30 nurses received education, Kirkcudbright Hospital Staff, District Nurses and Rapid Response Team. As you can imagine there was a lot of anxiety, fear and uncertainty amongst the nurses. This was actually the first patient to get discharged to Kirkcudbright Hospital with a UWSD. John was fully aware of my role and was updated.

The time had come, John was ready for discharge. Understandably so, he was very anxious. I took the decision to actually go in the back of the ambulance with him to Kirkcudbright Hospital. Holding his hand and bantering away we both arrived to our destination. We were pleasantly greeted by the nursing staff. They knew John as he was a local from the town and had received care from them in the past.

His family were so supportive especially his daughter Michelle, whom I have now made a lifelong friend.

John managed to continue life for 7 months in Kirkcudbright Hospital. Unfortunately he did not get his wish to go home but in all fairness the care he received from the hospital staff made his last few months comfortable and to have that precious time with his family. He managed to celebrate his 60th birthday with his family. It was an emotional, uplifting day.

I guess what I’m trying to say folks….

“Going that extra mile” was so successful and beneficial. I would certainly do it all again.

Thanks for taking time to read this.

Sharon Shaw is Clinical Educator for NHS Dumfries and Galloway

 

 

 

In Memory of Kate by @kendonaldson

Over the years compassion and kindness have been common themes on this blog and nobody encompassed them more than Kate Granger.

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Kate was many things; Consultant geriatrician, campaigner, wife, aunty, MBE and patient. She was born and raised in Yorkshire and after qualifying in medicine from Edinburgh University returned there to complete her training in medicine for the elderly. She married the love of her life, Chris Pointon, in 2005 and then in 2011, at the age of 29, everything changed. After falling ill whilst on holiday in California she was diagnosed with a Sarcoma and given 12 – 18 months to live. Characteristically she decided to defy the odds and do something meaningful with the short time she had left.

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I think it would be fair to say that prior to her illness Kate was a compassionate, caring and person centred clinician who inspired those around her. However her illness gave her a unique insight into how we deliver healthcare, in particular the ‘small things’ which we often forget – like introducing ourselves. It was during a hospital admission in 2013 that Kate noticed that none of the healthcare professionals dealing with her told her their names. The first person to do so, and show real care and compassion, was a porter. She reflected (and raged a little) about this and from that experience the #hellomynameis campaign was born.

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#hellomynameis is a great example of a very simple idea which has the power to make a difference. It started on twitter and progressed to name badges, internet memes and finally circled the globe. During the Ebola outbreak in Western Africa those caring for the afflicted could write their name on a #hellomynameis sticker and attach it to their protective suit and thus patients would at least know the name of those tending them. Many politicians and celebrities have endorsed the project and it has been adopted in many countries around the world. I for one continue to wear my badge with pride.

We were very fortunate that Kate wrote for this blog in 2014 just prior to her visit to NHS D&G. Her blog can be read here.

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Since Kate died I have read many obituaries and blogs which are far more thoughtful, and certainly more eloquent, than anything I can hope to write. I would like to quote a few of them here.

Ali Cracknell, a fellow Geriatrician and friend had this to say on the British Geriatrics Society blog:

“I always thought we would work together long term, and the thing that makes me really smile is Kate is with me more than any other person at work. Every encounter with a patient “hello my name is …”, every MDT, every meeting with a new member of the team and every morning I put on my “hello my name is” badge, she is with me, she is behind every little thing I do every day, that just makes such a difference. How could one person make a difference like that?  “#hello my name is”, is so much more than those 4 words, Kate knew that and felt it, and we all do, it is the person behind the words, the hierarchy that melts away, the patient:professional barrier that is lowered, the compassion and warmth of those words.”

Just Giving, the website through which Kate raised over £250,000, described 5 Lessons they learned from Kate. You can read them in depth here but the 5 lessons are:

1) We need to communicate
2) Always rebel
3) Remember romance
4) Make goals
5) It’s ok to talk about down days

A little more about number 3, Remember romance. Just giving had this to say about that…

“Kate and her husband Chris have set the bar high when it comes to romance. Throughout Kate’s journey, she never forgot to mention how important her partner is to her and how lucky she feels to have met her soulmate. After the diagnosis, the couple recreated their wedding day and renewed their vows. They even did their first ever date in Leeds all over again.
The duo did absolutely everything together, including competing in fundraising events.
Seeing Kate and Chris wine, dine and care for one another teaches us to never take our loved ones for granted, and to remember romance. The couple remained incredibly close and strong for the duration of Kate’s illness, and managed to maintain an amazing sense of humour in the darkest of
times. It reminds us all to reflect on how we treat our partners.”

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The BMJ published a particularly touching obituary which can be read here.

I will end with a quote from Macleans, a Canadian weekly magazine…

“Jeremy, Jackie, Tasha, Lucy, Pam—Kate’s doctors and nurses had names in her blogs and Twitter feeds. Outliving expectations by three and a half years, she met her fundraising goal of £250,000 for Yorkshire Cancer Charity, encouraging doctors worldwide to say hello, as she herself said goodbye.
On July 23, 2016, on her 11th wedding anniversary, three days after meeting her fundraising target, Kate was lying in her hospice room, no longer able to swallow. Christopher opened a bottle of champagne and placed drops on Kate’s lips. Caretakers called in her other family members. At 3:50pm, after Adam and Christopher’s mother had arrived at her bedside, Kate stopped breathing. She was 34.”

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Ken Donaldson is Deputy Medical Director (Acute Services) at NHS Dumfries and Galloway

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.

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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

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.

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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

 

 

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/