Choosing how to die

As a 54 year old British man recently chose to end his life in a Swiss Dignitas clinic, the debate over assisted dying has reignited once again.  The media have documented, how the gentleman, Jeffrey Spector, was afraid that an inoperable tumour, growing on his spine, would cause him to become paralysed and dependent upon others.  Many people have felt that the father of three took his life too soon, and that there was always a chance that he would not become paralysed at all.  For others however, it was felt that Mr. Spector had made the right decision, and was extremely brave to do so.  Regardless of the split in opinions that exist, this gentleman was able to end his life exactly how he chose.  With foresight of the reactions, Jeffrey Spector was quoted as saying, ‘Some people will criticise me, but do not judge me.  Never judge anyone unless you have worn their shoes.’  People generally have some degree of choice in how they live their lives, so surely they should also be able to make some choices with around how they die.

In response to Mr. Spector’s story, many people have recently contacted the media, and have courageously shared personal accounts of how they helplessly watched family members die, while enduring pain and a low quality of life.  Most of these people expressed how they wished assisted dying had been a viable option for their loved one.  In the United Kingdom however, it still remains an illegal issue.

Discussion, over the last week, has inevitably compared human end of life care options to those available to our pets.  If euthanasia for people was legalised however, parts of the public still state reservations about where the boundaries of decisions should lie, and how issues of capacity should be guided and dealt with; for example, a person living with late stage dementia.  Naturally, there are some huge ethical considerations, but if clear guidance was put in place, there is surely possible scope for a suitable assisted dying bill.

Most nurses choose to go into the profession, in order to help make people well again; but for a smaller, yet significant, amount of nurses, their job is to help the dying, whether this is through providing comfort at the culmination of a natural elderly lifespan, or through a degenerative or terminal illness.  Nurses, working in environments such as hospices or as part of organisations like Macmillan, do a fantastic and valuable job; and, arguably, it takes a special kind of person to fulfil that role well.

Death can be a discomforting subject, and I am still personally unsure what I feel, deep down, about assisted dying.  I do know, however, that people need to talk more openly about end of life and palliative care, because if they succeed in avoiding discussion entirely, death will eventually become inevitable, either for themselves or a loved one.  No, it is not a nice thought, but as humans we are not immortal.  Yes, of course, our main focus should be on living our lives to the full and best of our abilities; however, a comfortable death, with some degree of choice, should also warrant some focus in bringing about life’s conclusion.

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Sir Terry Pratchett, OBE. 1948 – 2015

Terry Pratchett

As someone who is passionate about helping people who are living with dementia, I was really sad, and quite shocked, to hear about the death of Sir Terry Pratchett at just 66 years of age. Sir Terry had been diagnosed with dementia, eight years ago, following an initial suspicion that he had had a stroke. Unfortunately however, Sir Terry turned out, more seriously, to have an uncommon form of early onset Alzheimer’s, known as Posterior Corticol Atrophy.

Sir Terry was best known as the writer of the fantasy Discworld series, and had produced over 40 books in that particular series; the last one being completed as recently as the Summer of 2014. In total however, Sir Terry was the author of over 70 books, including books for children. His books were translated into many languages and enjoyed success worldwide. Indeed unsurprisingly, Sir Terry gained his knighthood for services to Literature. His determination, creativity and his prolific amount of writing were all impossible to ignore!

As an avid bibliophile myself, and having two degrees in Literature, I greatly admire Sir Terry’s outstanding talents and huge achievements. My life would be so empty and would have an unfillable void without my books. Without authors like Sir Terry, producing rich material for our imaginations, our lives would undoubtedly be missing an essential dimension, arguably as precious as the air that we breathe.

Sir Terry’s passions evidently ran deep throughout many areas of his life, as he had been a keen campaigner for the Right to Die and an advocate for Dignitas. Additionally, he campaigned tirelessly for dementia and raising the public’s awareness. As shown in the photograph above, Sir Terry even managed to carry on writing while living with dementia. What a positive image of hope and inspiration for people living with dementia.

Sir Terry died a natural death at home on the 12th March. He was apparently surrounded by his family and had his cat asleep on his bed. The family’s grief must be so profound and hard to bear, but how proud they must feel, and what comfort they can take, from Terry Pratchett’s immense achievements and effects upon the world.

A Just Giving page was set up in his memory. Donations are for the Research Institute for the Care of Older People. It can be accessed at:

http://www.justgiving.com/Terry-Pratchett

Mannequins and Collage

mannequins

This week was the end of the first semester of Year 2, and the End of Life/Palliative Care and Supporting Families and Carers optional modules came to a conclusion.  In order to summarise and finalise each module, special activities had been prepared in each of the last lessons.

In the End of Life/Palliative Care module, we went into the high fidelity simulation labs and worked with one of the mannequins – ‘dummies’ – and one of the lecturers.  The mannequin was a 43 year old man, ‘Vinnie’, who was dying of cancer.  He had been rushed into hospital the night before, and his wife, our lecturer, had been near his bedside ever since.  Vinnie was unconscious but apparently comfortable, as he had been given morphine to treat his pain.  Our job, as student nurses, was to look after Vinnie and his wife, ‘Jackie’, for the afternoon.

Our group consisted of 20 student nurses and we all formed into ten pairs of two.  A pair at a time, we went in to talk to Jackie and to check up on how Vinnie was doing.  The rest of us were able to watch each pair as they looked after the couple, through a camera in the classroom.  When each pair returned, we were able to discuss each scenario and how Vinnie and Jackie were progressing in their journey.  We then decided as a group how the next pair might move on in their discussion with Jackie, and their efforts to keep Vinnie comfortable.

mannequin 2

The afternoon was marked by a series of developments, with the first one being Jackie’s reluctance to accept that Vinnie was dying.  She then became concerned about the cannula on Vinnie’s arm and how it was looking sore.  This was eventually resolved by removing it, as the IV fluids did not need to be connected.  The next concern was that Vinnie might be getting dry in and around his mouth from the oxygen mask, and so the mask was temporarily removed.  His breathing got worse, and so the mask was put back on.  Later however, it was possible to completely remove it, and so then regular mouth care was able to be given.  This consisted of a damp sponge-ended ‘lollipop’ stick and some Vaseline applied to his lips.

Jackie went through an emotional rollercoaster of painful acceptance regarding Vinnie’s impending death.  It was decided that Vinnie’s brother should be called, as he was living a few hours away in London.  A decision was also made to bring in the couple’s two children, but this eventually did not materialise.  The question of whether Vinnie had a DNAR (Do not attempt resuscitation) in place was also raised and discussed.  Jackie thought that a DNAR was absent, but she had to be told that it was in fact actually recorded on Vinnie’s notes.  Through the shock, she was able to accept that it was probably the most dignified course of action for her very poorly and dying husband.  Jackie went out for some air, and just after she left, Vinnie’s breathing started to deteriorate.  A panic pursued, as it was realised that there was no mobile contact number recorded for Jackie.  It was feared that Vinnie would die in her absence, but in fact it was just his breathing that was changing, as he approached just a little nearer to death.  Fortunately Jackie soon came back and Vinnie’s breathing pattern changes were explained to her.

 

Later on, Vinnie started to groan very loudly, and it was realised that he was experiencing breakthrough pain as his morphine wore off, and so it was therefore decided to administer him some more morphine.  Vinnie soon settled back down, and further measures were taken to keep him comfortable.  Two nurses changed his incontinence pad and cleansed his skin, as a decision had been taken not to use a catheter.  Another two nurses washed his hands and face, and gave him some more mouth care.  Jackie began to give him mouth care too, and she sat holding his hand and intermittently crying and kissing him.  Our lecturer’s acting abilities were extraordinarily realistic!  When Vinnie’s breathing finally stopped, the last two nurses (and I was one of them) could do nothing except comfort Jackie at a distance, as she buried her head in Vinnie’s chest.  Jackie sobbed, turning away from everyone, and the other lecturer, the ‘clinical nurse specialist’, came in to confirm the death and to tell Jackie that Vinnie had indeed died.  It was amazing how realistic the situation seemed, as once we student nurses were in the ‘ward’ environment, it just all felt so real, and we were able to completely forget that we were actually being watched on a camera.

I had secretly been dreading the end of life simulation activity, and many of the other student nurses had felt the same way too.  On the day however, it was actually a really valuable learning experience, as things are never usually as bad as what one originally thinks.  The learning was not limited to taking part in the simulation; it was actually valuably extended through watching our other student colleagues, and through discussing the scenario progression and outcomes as they emerged in real time.  The optional End of Life/Palliative Care module has been exceptionally good, and is one that I have found really valuable as a future potential dementia nurse.

In the Supporting Families and Carers module, we gathered as a whole group and then split down into smaller groups of about five students.  Each individual had previously been instructed to bring along a recorded sheet of feedback from a service user’s family member or carer, on our recent placement, which consisted of their comments on our performance as a student nurse.  Focussing on this information, we had then been previously told to write a piece of reflective writing on this feedback using a reflective framework model such as Gibbs, Johns, Schön or Kolb.  I personally used the Gibbs model, which I feel is quite a simplistic, but functionally useful guide.  Reflection is considered to be an essential part of nursing, as it helps a nurse to look closely at what she or he does well or can do better in the future, and why that is so, and how it can be achieved.  As a mature student perhaps, I feel that I naturally reflect in my head most of the time, but I am receptive to trying written reflection and want to give it a go.  As requested for the session, I had produced a piece of reflective writing for the lesson.

hands

In our small groups, we discussed and shared our prerequisite feedback and reflections, and thus learned from each other’s experiences.  Our lecturers then explained about the reflective art that we would be producing that day, via a collage.  They showed us examples of art that had been produced in the Brighton area for an exhibition called Sick, which, as the name implies, was connected with health issues and the expression of these through artwork.  The examples were very inspiring and we prepared in our groups to create our own expressive contributions, regarding what people like about us as nurses and what makes these people’s experiences good.  Collecting a large sheet of paper, some different coloured marker pens, some sequins, furry bobbles and glue, etc. we set to work as a group.

poster 1

We decided to draw a central family group of a mum, dad, child and baby, all very brightly coloured in.  We then recorded lots of captions about what people like about us as nurses.  These consisted of examples such as ‘being a good listener’, ‘reading stories to the children’ to ‘cooking eggs or pancakes in the morning’.  All of the captions were decorated with bullet point furry bobbles and glittery sequins, and it all looked really bright and busy.  When the time duration came to an end, we all felt really satisfied about what we had achieved, and felt that we had suitably summarised the learning journey on the module.

clock

 

Our other colleagues had produced some lovely expressive collages too, and so after mounting each art piece onto the wall, each group explained the thinking behind their creation to the rest of the class.  As a bit of fun, we all marked each other’s work, awarding our favourite a 4, then the next best a 3, a 2 and then a 1.  The winning group had a bag of edible goodies, but unfortunately it was not our group!  Other examples of artwork included a rollercoaster of emotions and a pair of glittery caring hands.  All of the creations were lovely, and the activity made me feel a sense of overall belonging to the group and to our profession as future nurses.  It was fun and valuable at the same time.

rollercoaster

Afterwards we had a surprise visit from the Head of the School, who was very interested and complimentary about what we had done.  The artwork, I believe, is now being displayed and shared within the university.  What a great end to the optional modules!

communication

 

New beginnings and endings

daffodills

As I observe all the signs of new life around me, it is clear that as far as nature is concerned, Easter is a time for new beginnings.  There are buds and blossom on the trees, daffodils, magnolia and hyacinths in the gardens, lambs in the fields, and birds building nests in expectation of their hatchlings’ arrivals.  On a secular level, Easter is, of course, a time for chocolate eggs, which are symbolic of the concept of new life, and have particular reference to the fluffy yellow new-born chicks.

On a more religious, and specifically Christian, level, the same chocolate eggs are again symbolic of new life, but this time with reference to the story from the Bible, in which Jesus arose from the dead.  This same event is remembered through the crosses on our hot cross buns, which we traditionally eat on Good Friday.  The cross on the buns is also evocative of the cross on the donkey’s back, when Jesus rode into Jerusalem on Palm Sunday.

The main new beginning that I write about today is my recent start as a Year Two student nurse.  For this first semester, we are able to study our own optional module choices.  My choices are the Supporting Families and Carers module and the End of Life, or Palliative Care module; and it is the latter of these two that I wish to discuss today.

Palliative care is only a recently recognised concept within the field of medicine, as the emphasis has previously been upon making people better.  People only went to the doctors when something was wrong, and the hospitals were there to sort out the problem and to provide a cure.  Through advocating the benefits of eating a healthy diet, taking regular exercise, limiting alcohol consumption and giving up smoking, preventative medicine has become another huge part of the 21st century health service; but so too is dying, and has been since man first appeared on this earth.

For something that is a certainty in every person’s life, death is a topic that many people are quite reluctant to talk about, and will often take great measures to avoid it altogether.  The reasons for this avoidance, I would guess, probably include feelings of discomfort, embarrassment, living for the day without worrying about tomorrow, and straightforward fear.  In an ever increasing ageing population, it may be something however, that needs to be given a little thought.

For the past week, I have been working on an assignment for End of Life, and while researching and reading the material that I required, and by also attending my weekly lectures, I have discovered a wealth of really interesting material about this subject.  Whichever field of nursing you are from, it is inevitable that eventually you will encounter a death.  As End of Life Care is not a compulsory part of the nursing curriculum, I thought that I would share some of the things that I have found really useful.

To get people talking, there is a really good website called Dying Matters, http://dyingmatters.org/.  It is aimed at ‘chang[ing] public knowledge, attitudes and behaviours towards dying, death and bereavement’.

There is an excellent booklet called Dying for Change, available to download at http://www.demos.co.uk/publications/dyingforchange which is again aimed at getting people to talk about dying.  It is written in an interesting and very readable format, and it addresses the main concerns about trying to get people to plan for the type of death that they foresee for themselves in the future.  For most people this is a death at home, but presently, this is likely to be a death in a hospital.  To help people to get their wishes, certain measures are recommended.

Planning for your future care – A guide is available on the NHS Choices website, http://www.nhs.uk/Planners/end-of-life-care/Pages/what-is-end-of-life-care.aspx  The booklet provides a simplistic general overview of some of the measures raised above, such as Advance Care Planning and other options.  ACP is a discussion about wishes and preferences, plans to refuse certain treatments, asking someone to speak on your behalf, and if things became really bad, to make decisions on your behalf and to look after your financial matters; this person is a Lasting Power of Attorney, and would have to be legally appointed.  The ‘What is End of Life Care?’ pages at NHS Choices provide greater detail and signposting on all of these matters.

For even greater detail on these concerns visit the Gold Standards Framework site at http://www.goldstandardsframework.org.uk/advance-care-planning  There are lots of resources available here, and one of my favourites is the Prognostic Indicator Guidance (PIG), which is used for recognising the signs and symptoms of when people are approaching the end of their life.  About 1% of the population will die every year, and it is quite often GPs who will predict whom they are likely to be.

Further information on Advance Decisions to Refuse Treatments can be found at http://www.adrt.nhs.uk/

A brilliantly informative End of Life Care website is St. Christopher’s Hospice http://www.stchristophers.org.uk/  St. Christopher’s was set up by Dame Cicely Saunders, the great nurse, doctor, social worker and writer, in 1967.  St. Christopher’s was the first purpose built modern hospice, and was the foundation of all the hospices that we see around us today.  St. Christopher’s website has loads of information and resources; there are some very good End of Life journals that are available for reading.

The National End of Life Care Strategy is available at https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life

And a good general overview of everything End of Life is available at http://www.endoflifecumbriaandlancashire.org.uk/index.php

Programmes to watch

I have also watched two excellent TV programmes regarding End of Life and death.  The first was a BBC2 production called Edge of Life, presented by Louis Theroux.  Louis visited a hospital in LA and spoke to dying patients and their families.  It was striking how many Americans would not accept death and choose to die in some kind of comfort.  The majority preferred to fight on with any available treatments, even though there was little hope and much physical pain to endure.  Although amongst the bleak prognoses, a miracle does actually happen.  It is heartening to see how much faith the Americans place in their religion, and that sometimes it does actually pay off.  I recommend that you watch this programme, if you can find it on the Internet; it is very good viewing.

The second programme was Choosing to Die, presented by the writer, Terry Pratchett.  Pratchett, himself, is currently coping with the neurodegenerative disease of Alzheimer’s.  This production is a fascinating account about terminally ill people who choose to end their life by euthanasia.  It tells the story of a few families who go to the Dignitas clinic in Switzerland, and voluntarily end their suffering by drinking a lethal poison.  This topic is highly controversial, and divides opinion massively.  Whatever your personal feelings, it makes compelling, but quite upsetting viewing, and actually features the last moments of a dying person.  Pratchett finds comfort in the lack of suffering and peace of the event.  It is not as grim as it sounds, and is again highly recommended.

Finally, I would like to wish you all a very happy and peaceful Eastertime with your family and friends.  Apologies, if you have found the topic slightly heavy, but while it is fresh in my mind, I felt that it was important to share.  Happy Easter everyone, and enjoy your chocolate eggs!