What do we mean by “protecting vulnerable people”?

People on all sides of the right-to-die debate want to protect “vulnerable people”. But the simple phrase masks a number of important issues.

Who are “vulnerable people”?

We should start by recognising that there are degrees of vulnerability. We are all vulnerable in some ways – to reckless drivers, and clever advertising campaigns for example. Some people are naturally warier, and therefore less vulnerable, than others.

At the other end of the spectrum those who have lost the use of their limbs are vulnerable to physical abuse. Those who have lost mental capacity (as defined by the Mental Capacity Act) as a result of stroke, coma or dementia for example, are vulnerable to people who have to make their decisions for them.

Of the extremes identified so far, “vulnerability” as it relates to any decision regarding assisted dying, only really applies to those without mental capacity. Other classes of vulnerable people who need protection relating to assisted dying include:

  • People currently suffering from a treatable depression
  • People with learning disabilities
  • People whose judgement might be temporarily impaired due to a recent changed situation (bereavement, life changing accident for example)
  • People whose judgement might be temporarily impaired due to side effects of medication.

We should be very wary of labeling all disabled or elderly people as “vulnerable” in so far as it relates to decisions about end of life. Many, while they may have physical vulnerability, or have lost sight, or hearing, are fully mentally competent and would find it unacceptably patronising to be labelled “vulnerable” in a mental sense.

Many older people experience a slowing of mental function, and failing memory, even if this has not been diagnosed formally as dementia. However, even those diagnosed with early stage dementia retain their mental capacity for a while. (Sir Terry Pratchet was a shining example, giving the 2010 Richard Dimbleby lecture while suffering from early stage Alzheimer’s.) These people become gradually more dependent on others for advice and help with making major decisions. This gradual loss of mental function comes at just the time when decisions may need to be made about ongoing medical treatment, care needs, and even the possibility of an assisted death. These people need support in making decisions from people they can trust and who understand and respect their long held views and personality.

The mental capacity act is clear about the extreme cases of mental vulnerability. Jurisdictions which have introduced right-to-die legislation have a requirement of mental capacity as one of their main safeguards. But mental capacity is not a black and white issue, so does this requirement do enough to protect this broader class of “vulnerable person” who’s mental abilities are fading significantly or are temporarily impaired, but have not crossed the line defined by the mental capacity act?  Many people are concerned that the answer may be “no”.

For large decisions, many of us like to discuss the issues with others, and double check other people’s opinions before arriving at our final choice. This is normal human behaviour. As some people get older they get more dependent on others to assist in their decision making. This makes them potentially vulnerable to the people they depend on to offer them advice that is in the best interests of the elderly person. They are still deemed to have mental capacity in the legal sense, but their mental capability is significantly reduced. They have moved into the grey area where the decision as to whether they retain mental capacity has become more questionable. We need to ensure that these people are properly protected.

What (and who) do vulnerable people need to be protected from?

Some of those who oppose legalising assisted dying argue that this type of vulnerable person who is increasingly dependent on others to assist in their decision making is open to persuasion to choose to end their life by the very people they trust. The argument is hypothetical – there is no evidence of this happening in the jurisdictions where medically assisted deaths are legal. However, the suspicion that this could happen is still a concern. Trusted family members may typically stand to inherit from the elderly person’s estate. Their inheritance may be being diminished by care home fees. The elderly person may be very demanding on the trusted family member’s time. The motives are there – hence the suspicion and wariness in society.

Equally those opposed to changing the law argue that medical professionals are also trusted advisors of the elderly. They have shortages of beds and a limited budget to manage. Might they not, at times, be tempted to persuade a person to choose to end their life if the option were available? Again there is no evidence of this happening, but it is a plausible scenario.

But what if someone genuinely decides that they really do want to receive life ending medication. Those close to them may not want to lose their relative – wanting them to keep hanging on to life, long after the time when the elderly person truly wants to let go with a little help to ensure a peaceful end. They are vulnerable to being persuaded to keep going against their will.

The medical profession has a natural desire to do whatever it can to keep people alive. But there is a risk here too that vulnerable people, (who still have mental capacity, even though their mental ability has significantly reduced), will be persuaded to accept life sustaining treatment which, while technically possible, is not what the patient wants, and is not in their best interests in terms of their long held views about death.

The eminent philosopher and lawyer Ronald Dawkin wrote in 1993, “making someone die in a way that others approve, but he believes is a horrifying contradiction of his life, is a devastating, odious form of tyranny.” Vulnerable people may be persuaded into this. They need our protection.

There is a very real danger that well meaning people (who may be close friends, relatives or medical professionals) may consider that a vulnerable person who does not have the same opinion as they do needs “protection”. It can even lead to the circularity of believing that the fact that the person disagrees, in itself demonstrates their “vulnerability” or lack of mental capacity! This is unacceptably paternalistic.

This principle was recognised in a recent court case in which a medical authority sought the right to amputate a paranoid schizophrenic patient’s leg as they believed that not doing so would endanger the patient’s life, but the patient refused. The request was rejected by the judge. In delivering his ruling, Mr Justice Peter Jackson said: “The temptation to base a judgment of a person’s capacity upon whether they seem to have made a good or bad decision, and in particular upon whether they have accepted or rejected medical advice, is absolutely to be avoided… Any tendency in this direction risks infringing the rights of that group of persons who, though vulnerable, are capable of making their own decisions.”

So we can see that a vulnerable elderly person needs protection both from those who may wish to shorten their life and from those who wish to extend it, if that is not in line with their long held wishes.

The law is currently very weak in protecting people against those intent on prolonging a vulnerable person’s life beyond their wishes. The best that is on offer is an Advance Decision (AD) which allows them to refuse specified treatments. But this only applies when the person no longer has mental capacity, so does not properly apply to those vulnerable people we are considering here. It must be all too easy for well meaning people to persuade these vulnerable people who are ready to die to “fight on” against their true wishes. The extent to which this happens is very hard to establish as it takes place in a context where the assumption is that keeping people alive for as long as possible is the best option.

Summary

The issues of protecting vulnerable people are complex, but we may conclude:

  • There are degrees of “vulnerability” which a person may have while still retaining legal mental capacity. We are all “vulnerable” to some extent. It is only where someone is approaching the limits of legal mental capacity that we should be justifiably concerned about the possible undue influence of others.
  • Assessing whether someone is sufficiently vulnerable to warrant some form of protection could only be done on a case by case basis by experienced professionals, and would naturally be linked with an assessment of mental capacity. This grey area of mental capacity should perhaps be recognised as “with capacity, though with a level of vulnerability that reasonably causes concern”.
  • In assessing vulnerability regarding life ending decisions, it might be helpful to consider how the individual has made other recent decisions. For example: is there evidence of a reduced ability for the person to make decisions independently?
  • We should be wary of imposing our own values on others. To do so can be paternalistic and deny an individual’s autonomy.
  • Few people make important decisions in isolation. They take into account the views of trusted relatives, friends and professionals – without necessarily agreeing with them. This is normal behaviour.
  • Vulnerability works both ways – the aim of “protection” should be to uphold the individual’s wishes from unreasonable pressure or persuasion by people wishing to shorten or extend a person’s life in a way that is contrary to the person’s wishes.
  • A wish for an assisted suicide when someone’s quality of life is below the level they can tolerate, and where there is minimal realistic hope of improvement, should not, of itself, indicate a level of vulnerability that reasonably causes concern.
  • Wishes expressed in an Advance Decision may usefully help determine what an individual’s wishes are, in the situation where their level of vulnerability causes reasonable concern, but while they still have mental capacity. See the MDMD suggestion for Extended Advance Decisions – for this purpose.