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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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!