Final Furlong

6F67CE97-104B-48C5-AC16-D22D45CBFFD0-3682-0000039BE79B9858.jpeg

Written in Buenos Aires for ‘Death Cafe‘ this piece is about more about life than death – it concerns the ‘final furlong’.

For some – you might say ‘the lucky ones’ – death comes in old age, suddenly, painlessly and without warning. Others may face a long and challenging ‘final furlong’. Those of us in this group will need to prepare for death if we are to get it right – or as right as preparing for an unknown death can ever be.

Preparing for change is often one of our most difficult tasks as we age. We may be distracted by other concerns, in denial about our mortality, or simply too frail to address it. The one inevitability is that we will not escape it; so there is need to prepare well for a ‘good death’.

I shall be dealing with several aspects of ‘the final furlong’. My list is not exhaustive, nor my opinion definitive. There is more to be said, and I hope readers will add their experience and insight to produce the best-crafted approach to the process of infirmity, dying and death. Of particular interest is the less visible group who face the final furlong prematurely, before age can justify demise.

THE NUTS AND BOLTS
As it is unlikely that you will be given sufficient, if any advance warning of death, this advice is applicable to every adult, irrespective of age.

The first essential – to make a Will.
Recently, as a barrister I was instructed by the Official Solicitor to deal with an application in the Court of Protection on behalf of a dying woman. When younger, she had made a Will, but in the meantime her son – her sole beneficiary under her Will, had died. She was however fortunate in her final years to be cared for by a devoted step-daughter who lived with her. These were happy years until the old lady developed dementia. It was then that her historic (and now useless) Will was discovered, and her incapacity made it too late for her to make a new one.

Under the rules of Intestacy her step-daughter would receive not a penny. Within the list of the distant relatives to benefit, none had maintained contact with the old lady and most knew not of her existence. Using its inherent powers, the court indicated that it would change the Will in favour of the step-daughter, adding that there had rarely been a more deserving case. Yet the night before the hearing, the old lady died, and her step-daughter was forced to leave her home with just her clothes after 15 years as unpaid resident carer.

This tale tells of a bigger story. It speaks of the need to make, and review your Will to take account of your present circumstances. The ‘old Will in a drawer’ may be your last iniquity to a well-spent life.

My advice: after the age 25 make a Will, and update it as your life circumstances change. In later life, address your choices ‘root-and-branch’ to ensure your Will is appropriate and fair. Make a list of everything you possess, from real estate (houses and land), shares, policies and pensions – to other assets such as savings, vehicles, jewellery; then list their location. Set out your wishes in simple terms. A solicitor may prepare this for a charge, but it is possible to make your own Will by following this simple free guidance here.

The second essential – to prepare two powers of attorney.
As we age we lose capacity. At first this may be simply ‘a senior moment’ and a forgotten name. Few people reach the end of life with both memory and reasoning intact. In the future there will be many more elderly people with cognitive deficit. More concerning for a younger generation is the possibility of loss of capacity through trauma, such as car accident, major illness or stroke.

Most incidents of loss of capacity come suddenly and without warning. So it is wise to prepare powers of attorney that enable a relative or friend to make important decisions on your behalf should you lack capacity. There are two powers of attorney – one for health and welfare decisions; one to manage financial affairs. They cannot be exercised against your will, so that should not be a reason for failing to take this step.

My advice: make both at any age beyond 40 years. There is a cost to register your powers of attorney, but the cost is infinitesimal compared with the professional charges that will be involved should this choice be neglected. Ask a family member to assist you, or prepare both using the government’s on-line free service here.

The third essential – to make an Advance Decision and Advance Statement.
The advance decision sets out your instructions concerning your medical care at the end of life. Properly made and recorded, it is binding on medical professionals and relieves distressed relatives of difficult, sometimes divisive decisions. Whilst assisted dying is not currently a legal option in the UK, supported dying is. So this is your chance to specify the extent of care you would seek at various stages when your death is imminent, or should worthwhile existence have ceased.

You will be relieved to know that your advance statement is a more creative document. Here you state your preferences for care should you not be able to articulate them when the time comes. These may include where you would prefer to end your days, how and by whom you wish to be cared, by what name you wish to be addressed, what food, music and interests are important to you, and as important, what you would wish to avoid.

Preparing both the decision and the statement are simple using the free Compassion in Dying on-line support here.

Those facing terminal care should also make an advance care plan. For this you need to consult your treating physician when the time comes. Ensure that your advance decision and advance statement are attached to the care plan.

BEYOND THE BASICS

Prepare your own funeral / other arrangements.
Whilst to some this sounds a morbid topic (which it is), others find it quite empowering. You will not experience what you plan, but by preparing in advance, your family will be spared much work, stress, distress, and probably many arguments as to what is best.

At the most basic level, would you wish to be buried or cremated? Where would you wish to be buried or have your ashes scattered, how and by whom?

My mother chose her own funeral director – someone who she had known and respected. She pre-paid her funeral arrangements, as a sculptor, carved her own memorial stone, and specified the exact position where her ashes should be placed. On her death all that was required was a simple phone call – everything else was sorted.

My advice: prepare a plan. Humorously mark it “It’s My Funeral’, leave a list of who you wish to be invited, and how they may be contacted. Why not choose your favourite music, hymns, readings, and set out your wishes for a funeral breakfast or wake? Make provision for this within your Will so that the cost is clearly covered and not contested.

Where do you want to die?
In ‘The lady and the Reaper’ film we witness the conflict between the medical profession and the Grim Reaper. Hopefully, your advance decision will have taken care of this particular battle.

But there remains the issue of where you would wish to end your days. I have visited splendid care homes that are well staffed with caring people – yet often I sense the tediousness of day-to-day existence that many residents experience in a care or nursing home.

Towards the end of my mother’s life, remaining in her own home with support afforded her access to all that was familiar in a location where friends could drop by.

Others may not be so fortunate. Removal to a care home can be confusing and may be distressing. For those with mental capacity, the move is itself a form of bereavement when they let go of possessions and familiarity.

My advice: Write down your wishes. If you own your home, assess its suitability for old age, advancing infirmity and ‘the final furlong’. What is needed to allow you to remain there? Can it be adapted to afford you ground floor living? What about electronic, key-less entry for family, visitors and carers? What is the value of your home should you need to move? What other accommodation will your equity and savings afford? If you do not own your home, what alternatives are out there by way of retirement or sheltered accommodation?

If you reach the stage where you may need hospital care, do you really want to undertake this last journey and face death in a hospital bed? If not, your family and friends need to know your wishes and feelings, so that they can be respected.

Departing with dignity and saying goodbye
Most of us reach the end of life with unfinished business. It may be an argument with a relative or friend, or an unspoken acknowledgment of love, thanks or support. At the simplest level it could just be who you would wish to be informed when you die.

My advice: make a list of who you wish to be told of your death, and how they can be contacted. Write letters to those that you love, respect and will miss, together with those that you know will feel your loss. Should you have outstanding issues, you can address them in a letter sensitively – understanding that there can be no reply.

In Mitch Albom’s ‘Tuesdays with Morrie’, facing end of life, Morrie was asked what he valued most in life. His answer was unsurprising – ‘family, friends and relationships’.

Perhaps, by way of acknowledgement or repair, a word of thanks or forgiveness to our family, friends and those we have known and valued can be our final parting gift before we die?

Stephen Twist © 2017 for Death Cafe
With thanks to YG2D.com for the photo

End of life – now await Lord Falconer’s bill on 18 July in the House of Lords

tony nicklinson

The long awaited judgment in R v Nicklinson has been handed down in the Supreme Court. Here is a link to the YouTube video.

Readers will note that the judgment comes after considerable deliberation by  a massive nine  Supreme Court Judges – an extremely rare occurrence. It follows that this is one of the most important judgments of recent times, and is worthy of a careful and comprehensive read.

Dignity in Dying summarise the 366 paragraphs of judgment thus:

Summary of the case outcomes

Martin case

None of the nine justices ordered the Director of Public Prosecutions (DPP) to clarify the prosecuting policy on assisted suicide in relation to healthcare professionals. However, Lord Neuberger, Lady Hale, in particular, made it clear that the justices expect the DPP to look again at her policy in the light of their concerns and comments, and to amend it as she sees fit.

This is, in particular, to address a clear contrast between what the prosecuting policy actually says about healthcare professionals and assisted suicide, and the interpretation given to it by the DPP’s legal counsel during the court hearing on her express instruction (this was essentially agreeing with Lord Judge’s interpretation in his decision on the case at the Court of Appeal).

Nicklinson/Lamb case

Whilst there was no declaration of incompatibility, several of the justices indicated that they think the court could (depending on the application before it) declare section 2 of the Suicide Act incompatible with Article 8 ECHR rights in the future if Parliament does not amend it.

Lord Neuberger, Lord Wilson and Lord Mance accept that, in the right case and at the right time, it would be open to the Supreme Court to make a declaration that section 2 of the Suicide Act 1961 is incompatible with the right to respect for private life protected by article 8 of the European Convention on Human Rights. However, they would prefer that Parliament have an opportunity of investigating, debating and deciding upon the issue before a court decides whether or not to make such a declaration.

Lady Hale and Lord Kerr would make a declaration of incompatibility now. Lord Kerr put matters simply:

“If one may describe the actual administration of the fatal dose as active assistance and the setting up of a system which can be activated by the assisted person as passive assistance, what is the moral objection to a person actively assisting someone’s death, if passive assistance is acceptable? Why should active assistance give rise to moral corruption on the part of the assister (or, for that matter, society as a whole), but passive assistance not? In both cases the assister’s aid to the person who wishes to die is based on the same conscientious and moral foundation. That it is that they are doing what the person they assist cannot do; providing them with the means to bring about their wished-for death. I cannot detect the moral distinction between the individual who brings a fatal dose to their beloved’s lips from the person who sets up a system that allows their beloved to activate the release of the fatal dose by the blink of an eye”.

Is  the judgment the ‘yellow card’ to our legislature; or simply indicative of the Supreme Court judges being too cautious – despite the weight of public opinion concerning their moral duty?

The Assisted Dying Bill brought by Lord Falconer is due for its first reading in the House of Lords on 18 July 2014. The majority of Supreme Court judges have sent a clear message to the legislature – ‘whilst we will not interfere now, should the law not be clarified by new legislation, we may’.

Dying for death – the legal right to die

Following a recent personal experience is sometimes not the best time to address life-changing legal issues that will affect others. During the recent protracted death of my 91 year old mother following a severe stroke, I found myself and my family precipitated onto the Liverpool Care Pathway. Our involvement was to watch, bedside, whilst she struggled towards a delayed death, cared for by kind and competent medical staff, but hindered by an unkind process.

The Liverpool Care Pathway is to be reviewed. Is it sufficiently clear? Is it clear regarding the issue of food and hydration during dying? How can we ensure that proper information has been shared with a patient’s family, and consents have been freely given?

The Pathway, developed during the late 1990s in conjunction with the Marie Curie Palliative Care Institute at the Royal Liverpool University Hospital, was to allow people with a terminal illness to die with dignity. Then, and perhaps now, this approach is counter-intuitive for a medical profession dedicated to cures and life.  Entry to the Pathway is the recognition that death is both inevitable and imminent. This final furlong involves the end of active, life-sustaining treatment, and the acknowledgement that death is an objective.

The Pathway may be simple if the patient is unable to take nutrition and liquids without painful medical intervention. An unconscious patient is expected to slip further from life, absent life support. But what if the patient really needs assistance with dying?

Tony Nicklinson suffered from ‘locked-in syndrome’. His unsuccessful High Court challenge to the right to an assisted death was taken over after his death in 2012 by the paralysed Paul Lamb, and resulted in the constitutionally correct, but unkind ducking of the issue by the Court of Appeal. The court held that denying assistance towards death constituted a proportionate interference with Article 8 rights to self-determination. Lord Judge considered that any change to the law was a matter for parliament to legislate.  The associated ‘Martin’ appeal was however allowed. Here, the Director of Public Prosecutions was required to provide clearer guidance on prosecution policy of those, including medical staff, who may accompany a patient to Switzerland for the purpose of assisted dying.

The matter could not end there. The case now awaits judgment from the Supreme Court. Paul Lamb has continued his legal battle for the right to an assisted death, whilst Keir Starmer, the former Director of Public Prosecutions asked for further guidance from the Supreme Court on prosecution policy.

Examining the current guidance, it is significant that the ‘full code test’ which has to be met before a prosecution is brought, comprises not just an evidential test, but a public interest assessment. Herein is the dichotomy – between individual rights (or wishes), and public interest considerations.

Baroness Mary Warnock (moral philosopher and thinker) and Elisabeth MacDonald (cancer specialist and expert on medical law) captured these issues comprehensively and sensitively in ‘Easeful Death- Is there a case for Assisted Dying‘, published by Oxford University Press in 2008. They summarise the debate (as did the House of Lords Select Committee) as representing two conflicting principles – ‘the sanctity of human life’ and ‘the principle of autonomy’. In 1998, the debate centred around the wishes of motor neurone disease sufferer Diane Pretty to die with dignity. Lord Joffe’s bill, the last before Parliament, was rejected in 2006. It is a sad commentary on the state of English law that, whilst parts of the European community have developed a cogent end-of-life policy, the UK still flounders with indecision.

The BBC script writers of Coronation Street revived the debate this year with the death of Hayley Cropper, taking her own life rather than waiting for a painful death. Following the screening, polls recorded that 80% of the British public support the idea of medical assistance to die with dignity. Interestingly, 71% of those expressing religious beliefs also support a change in the law.

Should the wishes of mentally competent adults be treated with respect when it comes to the fate of their own life and body? Should those whose medical or physical condition is so severe that they are unable to help themselves, be assisted on the pathway to dying? Are sufficient safeguards available to prevent unlawful death? Should the compassion card trump the legal prohibition?

The latest Assisted Dying Bill, brought this time by Lord Falconer and modelled on the law in Oregon, USA, is to ‘enable competent adults who are terminally ill to be provided at their request with specified assistance to end their own life; and for connected purposes’. A free vote is to be allowed, although currently 30% of MPs support the Bill and 40% are yet undecided. The Bill’s scope is limited, compared with Switzerland (where assisted suicide has been lawful since the 1940’s), Holland and Belgium.

Whilst this Bill may not have helped my mother towards a peaceful death -with public support – it is certainly a step on the way.