Are there exceptional circumstances that lie outside of provisions within the Assisted Dying for Terminally Ill Adults (Scotland) Bill)?

The first thing to state is that those who support Assisted Dying may be best served by supporting the Bill.  Liam McArthur’s Assisted Dying for Terminally Ill Adults (Scotland) Bill is the fourth attempt to introduce Assisted Dying legislation in Scotland.  The current Bill proposes to establish a clear and unambiguous position in law.  

Supporters of the Bill can argue that  

• the intractably suffering with terminal conditions will no longer need to fear an unbearable and traumatic death.

• the intractably suffering with terminal conditions will no longer feel forced to poison themselves alone and in danger of miscalculating the dose or in ignorance consuming something that causes unnecessary suffering or seeking (and possibly failing) to kill themselves in some other awful way.  

• the intractably suffering with terminal conditions will no longer be forced into the trauma and expense of travelling abroad to a death before it is necessary, or forcing inequality upon the many who cannot afford to travel to Dignitas.

• the intractably suffering with terminal conditions will no longer be forced to kill themselves via dehydration and starvation.

• the intractably suffering with terminal conditions will be be protected in their attempt to die by having a process managed by medical staff.

• the intractably suffering with terminal conditions will be able to say goodbye surrounded by loved ones.

• the intractably suffering with terminal conditions will have the confidence of greater control over how they die, even if they choose not to use the dosage supplied.

The objective of the current legislation is a worthy one.  It is a common-sense, ethical and compassionate proposition, and will primarily benefit cancer sufferers who are expected to die within a period of time that qualifies the condition as terminal. The imperative must surely always be to help (as supporters of Assisted Dying see it) as many who face intractable suffering as possible while ensuring the passage of the Bill.  The proponents of the Bill have deliberately set very specific and tight criteria within there Bill with a view to enabling passage.  That said, there are omissions within the Bill that can be explored.

12.1  Omissions

There is no provision for a medical professional to legally administer a lethal dose the bill.  This excludes any consenting adult who is unable to self-administer a legal dose.  This raises issues of justice and equality of provision.

The ‘supply but do not administer’ argument behind the proposed legislation appears to be an argument about how many angels can dance on the head of a pin.  Apparently a doctor can place a pill in the hand of a patient seeking an assisted death, but not in the patient’s mouth.  

Is there, in reality, much difference between putting a pill in the hand or putting a pill in the mouth of a patient or injecting a substance? 

If the patient is capable of swallowing or spitting out the pill, or indicate opposition in any way, then personal autonomy still exists, and the gap in the causal chain can be argued to still exist. 

If the patient is incapable of lifting the pill to his or her mouth, but is able to choose whether to swallow or spit out, and a family member places the pill in their loved one’s mouth, is the relative guilty of culpable homicide?  Is that any different to, with consent, removing feeding from a patient?  Is removing a tube from somebody’s arm knowing that it will lead to their death much different from adding one in the same knowledge?  It can be argued that both assisting to die and letting die as equally active and deliberate decisions.  The scope of double-effect itself is at best ambiguous and a grey area in modern medicine.  We know that paralysed individuals can refuse further treatment, although that can still cause intense suffering before death.  We know that those suffering intractably and unbearably but not imminently terminal can refuse food and water that, often in conjunction with deep sedation, will simply more slowly kill the patient as they weaken.

In the interests of equality and justice, why can’t a consenting paralysed individual qualify for an assisted death?  Will a modern day Kevorkian device be required, and legally allowed, that will deliver a dosage upon a certain number of consecutive blinks or moans?  As there is provision for the patient, if unable to sign the declaration due to disability, to do so by proxy, then an forbidding the use of a proxy in administration of the dosage seems inconsistent.

There is no provision to legally supply or administer a lethal dose to a consenting patient who may not be classified as terminal, but who is suffering unbearably, incurably and intractably in the bill..

Where an autonomous individual sees the outcome of their requested death (ending intractable and unbearable suffering) as a personal benefit and not to their detriment, it is difficult to see how medical support in this aim contravenes medical ethics. 

“The argument for reform is particularly compelling when a condition overwhelmingly burdens a patient, pain-management fails to adequately comfort the patient, and only a physician can and is willing to bring relief.”  

12.2  The difficulty defining terminal

The Scottish proposals do not specify a six month period, and although that has generally been understood, the lack of specificity makes sense.  The bill defines terminally ill as follows:

“For the purposes of this Act, a person is terminally ill if they have an advanced and progressive disease, illness or condition from which they are unable to recover and that can reasonably be expected to cause their premature death.”

Specialists in any medical field can generally offer reasonable estimates of likely mortality from both experience and existing data.  However such specificity in prognostication remains a complex challenge.  Murray and Etkind argue that “uncertainty is inherent in advanced illness”, and note: 

“Prognostic eligibility criteria are limited by the fact that prognosis is inherently uncertain and there are no valid tools, tests, or clinical examinations that can reliably and safely identify that a person is expected to die within six months.”

They go on to note that:

“Prognostic criteria are not included in the Dutch, Belgian, and Swiss laws or the proposed legislation in Scotland. Canada removed prognostic criteria from assisted dying legislation to expand eligibility to people with intractable, intolerable suffering who are not approaching the end of life, and in response to legal challenges and concerns about discrimination.”

The criterion of intractable, unabatable and intolerable suffering, as confirmed primarily by the patient and recognised by medical specialists would appear to offer more accuracy in terms of need. 

If someone is suffering incurably and unbearably, and all other options are insufficient, then having the choice of an assisted death will offer great and compassionate relief.  Other sufferers whose condition is not predicted to end their life within six months are excluded from current proposals.  We can illustrate this devil’s bargain with a version of the “trolley problem”.

In this scenario you are presented with two people you care about, both with incurable conditions that cause them equal unbearable suffering.  In both cases palliative care cannot bring sufficient relief to make life bearable.  One of your loved ones is likely to die in a matter of months.  The other will continue suffering for years.  You are only allowed to offer an assisted death to one.  Who would you prioritise?

Of course the only acceptable answer is that in a truly compassionate society we would help both.  As Polly Toynbee notes:

“Most people travelling to die at Dignitas in Switzerland have longer than six months to live. Polling for Humanists UK shows a majority of voters support there being no time limits for those with degenerative diseases such as multiple sclerosis, by 73% to 9% against.”

As Jackson states:

“unbearable and irremediable suffering is not confined to those who are imminently dying, and if compassion is our justification for legalisation, it is that sort of suffering which should be the criterion, not terminal illness, especially since someone with longer to live will experience more suffering, quantitatively speaking, than someone whose death is expected within days”

As other states and countries have recognised, there are ‘exceptional circumstances’. Limiting access to assisted dying only to those who are expected to die within a limited time-frame seems arbitrary and irrational. The degree of unabated and incurable suffering is surely the most logical metric.  There are chronic suffers who do not have a ‘terminal’ condition but whose trajectory toward death is unbearable and inevitable, with no prospect of improvement. 

Canada, Spain, Belgium or the Netherlands, for example, employ broader and more inclusive criteria, “that medical assistance in dying should be available as a means to address intolerable suffering outside of the end-of-life context”.

Rather than placing a relatively arbitrary and guess-work time-limit, access to  assisted dying support, the Canadian system applies the criteria: 

1) Serious and incurable illness, disease or disability; 

2) Advanced state of irreversible decline in capability; 

3) Illness, disease or disability or state of decline causing enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable.  

In the Netherlands , the criteria are: 

1) the request is autonomously made;

2) the patient’s suffering is unbearable with no prospect of improvement; 

3) the patient is fully aware of his condition and prognosis, and the request is voluntary and persisting over time; 

4) the choice is made after the exhaustion of all alternatives;

5) a second independent physician has confirmed the conditions; and

6) the procedure is performed in a medically appropriate way. 

Why exclude those tortured by unbearable suffering with no prospect of improvement who are doubly unfortunate in that they will suffer unbearably for a longer period of time before dying?

58% of doctors believe that, if the law were to change, patients with physical conditions causing intolerable suffering which cannot be relieved should be able to access an assisted death.

Current proposals establish a ‘Devil’s Lottery’. Limiting the choice of assisted dying to sufferers likely to die within a set period of time may be a necessary compromise for assisted dying legislation to pass, but it is not a logical one.  It condemns all other incurable sufferers to continue suffering or to choose a “bad death” i.e. by drugging a person until their cognitive faculties are destroyed and a social death is experienced; inflicting an induced coma and/or dehydration and starvation on the sufferer and a traumatic deathwatch on their loved ones; or a suicide without safeguards, and “often by horrendous means” that may fail.  The head of the Western Australian police union came out in support of voluntary assisted dying stating: 

“People experiencing an irreversible deterioration in their health are taking their own lives, often in horrific circumstances. We need a compassionate assisted dying law to give people in certain circumstances a choice to die in a dignified way”. 

Dignity in Dying in the UK now estimate between 300 and 650 dying people end their own lives every year and as many as 6,500 attempt to do so.  The ban on assisted dying did not stop terminally ill people ending their lives, but forced many to find alternative ways. 

“This results in deaths that are needlessly violent, unsafe and damaging to those who are left behind.”  

Despite statistics being extremely difficult to collate, the Office for National Statistics offers an estimate of 14.2% of suicides are by those with seriously chronic and terminal conditions.  These are lonely and often messy deaths.  Many could have lived longer and had a better death if Assisted Dying and proper medical supervision was provided for all who seek it who suffer intractably.

In Del Villar & White’s analysis, for example, sufferers of Parkinson’s disease or multiple sclerosis (together 36% of suicides amongst those who took their own lives in Australia due to “incurable, advanced, progressive” conditions that caused unbearable suffering) would not qualify for Assisted Dying support under the criterion in Australia of 6-12 month life expectancy.  As they note in their study, (citing Coroner Caitlin English’s: Victorian Committee Report), if the offer of the choice of an assisted death is too narrow, “bad deaths” will persist – people taking their own lives in ‘desperate, determined and violent ways” will continue if “similarly narrow [voluntary assisted dying] laws are enacted.” 

Some critics of current proposals in Scotland argue that personal agency and the degree of unabatable and unbearable suffering should have primacy in consideration of qualification for Assisted Dying support.  As things stand with current proposals there remains a compromise that leaves longer-term sufferers to continue suffering over an extended timeframe. 

The exclusion of special cases does not protect and prolong lives, but instead condemns others to a drawn-out miserable death against their wishes.

12.3  So why are the Holyrood (and Westminster) proposals so narrow and conservative?

It is possible that the Bill’s architects hope that by limiting access to Assisted Dying to those who are likely to die within a short period of time, they are removing the risk of coercion.  They have also included legal sanctions for coercion.  All this in spite of any evidence of coercion (see Section 4) or risk to the disabled and chronically ill (see Section 5). 

Two previous attempts to introduce Assisted Dying legislation in Scotland failed.  The proponents of the current Bill wish for it to pass.  Opposition is very well-funded, and most of the press either oppose or maintain a neutral stance on assisted dying.

Bache notes in his research on voting patterns related to Assisted Dying in the past how surprising it has been that UK politicians have remained so out of step with public sentiment on the issue.  Bache found that: 

“Conscience issues such as AD/AS are complex moral issues, which provide a particular challenge for politicians. They are ‘not the usual kind of stuff of politics’ and MPs are ‘reticent’ to deal with them.”

and that

“many MPs seek to avoid the issue if possible, and, when pushed to vote, these MPs have tended to default to the safety of the status quo”.

Parliamentarians in the past tended to vote on party lines, and are risk-averse, possibly vulnerable to pressure from vociferous campaigners constituents, and therefore: 

“‘routinely avoid responsibility’ where possible for fear of offending a vocal minority of constituents with passionate views”.

Where change has iteratively occurred through court rulings in the Netherlands and Canada, the scope of ultimate Assisted Dying legislation has been broader.  If recommendations came first from a citizens’ assembly, more likely reflecting public opinion, we can speculate that the final legislation could be broader.  However, the precedents in both Scottish and Westminster parliaments have demonstrated how politicians appear to remain reluctant to reflect public opinion in the final votes.

The majority of people who will suffer intractably and would consider Assisted Dying fall within the scope of the definition of terminal illness in Liam McArthur’s Bill.  The adoption of this as the basis for accessing Assisted Dying will serve many people.  While a sense of justice may cause feeling that the proposed legislation should go further, there is a danger, bearing in mind the continued opposition in some quarters and the recognised caution of politicians, of allowing the perfect to obstruct the good.  The McArthur Bill, if passed, will provide great comfort to many people who would otherwise suffer terribly and unnecessarily.