Ed i to r ia l

Terminal illness – the right to choose

There are going to be some significant changes with

Gerodontology over the next few months which

should help all those submitting manuscripts to the

journal. Part of this involves the move to ‘Manu-

script Central’, a web-based submission and peer-

review system starting at the beginning of October

2008 (please see the separate article giving details)

and as from the first issue of 2009, the size of each

will increase by 25% allowing publication of more

papers per issue. There are also other plans in the

pipeline to enhance the profile of the journal and

to increase its availability to readers.

However, to return to more serious matters;

there has been significant discussion within the

media and in medical circles regarding the right of

patients to choose how they deal with their ter-

minal illness. There are enormous ethical and

moral issues associated with this situation and al-

most everyone has a view which may or may not

be influenced by personal experience, family and

relatives, close friends or associates and their own

moral code or religious belief.

Perhaps, we should start with a definition of

‘terminal illness’ from Wikipedia. They state that it

is used ‘to describe an active and malignant disease

that cannot be cured or adequately treated and that

is reasonably expected to result in the death of the

patient’ usually within a period of 6 months. Glare

et al. (BMJ 2003; 327: 195–198) reported that in

their review of doctor’s survival predications in this

group of terminally ill patients, patients were given

survival times that tended to overestimate their life

expectancy.

Patients also approach the news that they are

terminally ill in different ways. Some refuse all

conventional medical treatment to avoid potential

unnecessary side effects and try and live their life to

the full in the time they have left, others take on

any new development in the hope of success, no

matter how slim and there is a further group that

put their faith in more unconventional and possibly

unproven procedures. However, Fried et al. (J Am

Ger Soc 2007; 55: 1007–1014) found that there were

inconsistencies in the preferences of older adults for

the treatment of terminal illnesses over time.

The Department of Health in the UK has put

together with key parties, a 10-year ‘End of Life

Care Strategy’ to give patients a choice as to where

they want to die. The £286m up to 2010/2011 will

help develop new services and the provision of

high-quality palliative care as well as allowing

people to choose to die in their own home if that is

their wish; a strategy which many consider is long

overdue. The evidence would suggest that this

choice is not being met as up to 74% would wish to

be at home to die but in fact only 18% can do so. If

one reviews the places where people die, the

majority die in hospital (58%) followed by resi-

dential and nursing homes (17%), hospices (4%)

and the remainder elsewhere. Only 4% want to die

in a hospital bed. There are also major regional

variations with more dying in hospital in London

than anywhere else in the country, and the highest

percentage dying at home being in the north-west

of England. A study by Amir et al. (Cancer Strategy

2000; 2: 55–60) found that men were more likely

to die at home or in hospital but for women it was

nursing homes and hospices. If patients lived with a

partner there was a greater chance they would die

at home. They conclude that there should be a

move to providing care plans which more closely

reflects patients’ wishes. If a comparison of deaths

in hospital is made with those in other countries,

in Sweden it is 62.5%, the USA 49.2% and the

Netherlands 34%. Unfortunately, one of the

reasons that the numbers are so high is families

state that there is a lack of outside support and

means of pain management for their relatives.

A paper by Munday et al. in the J R Soc Med

(2007; 100: 211–215) reports that although people

in modern society have an enormous amount of

choice regarding their health, education, career,

holidays and material purchases, issues relating to

the time, manner and place of their death were

virtually beyond them. They point out that there

have been moves to legalise euthanasia and doctor-

assisted suicide in some countries, but in fact it is

used by relatively few people. An example is in the

Netherlands where only about 4% of deaths are

reported to occur this way. It will be interesting to

note what will happen in France where the Senate

has passed a bill allowing doctors to stop providing

medical assistance where it ‘has no effect other

than maintaining life artificially’. The researchers

also discuss the effects on healthcare professionals

with concerns of how the patients might react to

such discussions, their personal fears dealing with

such an emotive issue and apprehension regarding

care plans which they may be unable to fulfil. It is

important that when recording a patient’s potential

preferences for controlling their own death, it must

� 2008 The Author

Journal compilation � 2008 The Gerodontology Association and Blackwell Munksgaard Ltd, Gerodontology 2008; 25: 131–132 131

not become just another tick in the appropriate

box.

The Director of the Marie Curie Cancer Care,

Tom Hughes-Hallett has long advocated giving

terminally ill people the opportunity to die at home

through their Delivering Choice programme.

However, Nigel Hawkes in his column in the Times

(17 July 2008) pointed out that there was a difficult

balance between intervening and not doing any-

thing in these terminally ill patients. The difference

between the USA and the UK is stark as he states

that the NHS may not try hard enough to save

older people, whereas, in America, the last

6 months of life may involve 46 consultations with

their doctor and time in an intensive care unit at

some considerable cost. It has been suggested that

up to 50% of healthcare costs occur in this period

of time.

There is also significant discussion regarding the

testing of certain drugs which have not been used

in people, but could be given to those patients who

are terminally ill. There are important ethical and

moral issues associated with this strategy and it

could only take place with the compete under-

standing of the risks and potential side effects to

those involved, some of which could be detrimen-

tal. A number of centres, including St Bartholo-

mew’s Hospital in London will be part of the

evaluation but drugs will only be given to patients

with no hope of recovery and in low doses. It is

hoped that the results will lead to a reduction in the

time it takes to evaluate and approve a drug for

general use.

Surely, the most important thing about dying is

to be able to do it with dignity. There must come a

time when it is better to let nature take its course

and allow what is to be to be. Many families do not

want to prolong the life of a loved one unneces-

sarily particularly if any drug treatment or therapy

has unwanted or painful side effects. Ultimately,

there has to be a choice, and an informed choice if

at all possible for the patient. We are all going there

one way or another and we are all going to die

sometime.

‘It’s not that I’m afraid to die; I just don’t want to be

there when it happens.’

Without Feathers, Woody Allen (1976)

James P. Newton

Editor

� 2008 The Author

132 Journal compilation � 2008 The Gerodontology Association and Blackwell Munksgaard Ltd, Gerodontology 2008; 25: 131–132

132 Editorial