To comfort always

The Assisted Dying Bill to be debated this week in the House of Lords proposes that it should be made legal 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.”

In this blog I want to highlight some of the complexity around the issue, from the joint and inseparable perspectives of grand-daughter, nurse, educator and mortal.

It has been argued that we must keep to facts in this debate, to avoid being influenced by extreme stories of suffering and individual cases; but how else could it be possible to make a broad enough case for the range of people who may wish to access assisted suicide.  It is the individual cases that provide the perspective on the full range of situations in which such a change in legislation would be applied in practice.  Both sides of the argument are supported and refuted by tales of suffering and death, disempowerment and indignity.  I hope in this brief discussion to provide clarity on some of the complexities of this debate.

Many arguments for assisted suicide resonate with things I have seen in clinical practice; the thought of losing ones dignity and becoming dependent, the intractable pain – a student told me this week of the death of her nephew after several months as a hospice in-patient with spinal metastases, requiring so much ketorolac that he experienced a gastric bleed in the days prior to death and on such high opiates that he was drowsy and confused for weeks.  And yet his pain persisted and his death was difficult and his family will be haunted by the images of his last days for years.  I watched my grandmother deteriorate and die over several months, experiencing faecal incontinence, weight loss, pain and nightmares.  Her journey was not easy for her nor for anyone watching this happen.  My other grandmother, still living with advancing dementia, goes to bed each night hoping she will not awaken the following morning.  I understand the wish to avoid this, where it is avoidable.  Assisted dying offers just that: the ability to go at a convenient time, before things become unbearable.

A compelling argument for assisted suicide is the fact that many people with terminal illnesses already take their lives, but do so either in expensive or unregulated ways.  Those who opt for the former need to be well enough to travel and therefore arguably die sooner than they would were this service available in the UK.  Those who make their own plans utilise available methods to take their lives with no involvement from health professionals.  People order unregulated poisons “just in case“.  One patient I visited had displayed on her coffee table a book she had ordered from the United States evaluating different methods of suicide, rated for detectability, type of death, and ease of obtaining substances required (it made for an interesting first visit discussion about the role of palliative care).  Interestingly, the last I heard, this particular patient was alive and well and still climbing her apple trees four years later.  From this perspective, proponents for this change in the law claim that the process will become more transparent, less desperate, more straightforward.

For some, knowing one is able (legally and/or practically) to take ones life can lead to improved quality of life and a paradoxical decision against suicide.  Debbie Purdy is an example of someone who felt this way; after the High Court ruling that her husband would not be prosecuted for taking her to Dignitas, she found her fear of life and subsequent wish to die had diminished.  Her fear was that she would not be able to take her life if things got too bad, and in knowing that this possibility was available to her, she no longer felt the pull towards suicide.

There are many arguments against assisted dying – I just want to address those which are of most relevance to people working in palliative care, which as far as I can see, fall into 4 main areas:

Under-resourced specialist palliative care

If a person makes a request for assisted suicide, they will need to undergo a series of assessments and safeguards, to exclude potential abuses such as pressure from others, symptoms that might be better managed, and undiagnosed spiritual or psychological issues.  As far as I can see, there is only one professional group who already do this in their everyday practice, and that is specialist palliative care.  It seems likely then that this role will fall at the feet of palliative care services.  Although the bill contains allowances for conscientious objection, in reality this could polarise an already stretched palliative care service into “those-that-will” and “those-that-won’t”. 

Under-prepared generalist palliative care

Imagine the scenario:  a busy and harassed doctor confronted with a patient wishing to discuss assisted suicide, presenting with a range of complex symptoms and perhaps a challenging home situation, perhaps combined with a little existential despair and mild depression resulting from fatigue and changing role…. it would be quicker to complete a referral form for assisted dying than to engage in emotionally charged and time-consuming discussions about the nature of suffering.  In order to be the clinician who makes the decision, the only pre-requisite is that one “holds such qualification or has such experience in respect of the diagnosis and management of terminal illness”.  Not that one is able to fully appreciate the complexities of decision-making and the myriad of influences on this, nor that they have expert knowledge of palliative care – just a qualification or experience in this area.

Attitudes to dying and ageing
 
We must bring out into the open the societal prejudices at the core of this debate.  We value youth and vigour, we abhor age and disability.  In this context, we could never be certain of how influenced a person has been by their perceptions as to the value of their life as their illness progresses.  It is not always about physical suffering; the fear of dependence on others runs deep, and society perpetuates the myth of a burdensome ageing population – and just as ageing and disability are undervalued,  Western culture places great importance on autonomy and choice, convenience and comfort.

It is imperative that the quality of end-of-life care is improved, and central to this is the importance of confidence and sensitivity in having difficult conversations.  Many health professionals already find it difficult to have challenging conversations about death and dying.  However good and clear written principles and policies are, their interpretation in practice is quite another matter; the Liverpool Care Pathway furore is evidence of that. 

Change and growth on the journey towards dying

I have known patients talk about assisted suicide on their first visit, but subsequently change their minds.  Christopher Jones is an example of this, and wrote eloquently of his experiences of hope and despair in his illness journey. 

It is normal and human to change one’s mind.  People’s ideas of unbearable suffering are not fixed in time, and nor is the subjective experience of suffering.  The terminology about having a “clear and settled” decision to end their own life is curious.  How long must one remain settled for?  What does it mean to say that patients must make the decision on an “informed basis”? 

People will always choose to shorten their own lives.  I do not have any objection to this happening, where the decision has been made in a considered way, where the person is fully aware of the range of options and has chosen suicide as their way out.  I know that most people would want the option of ending their own lives should the suffering of their existence become unbearable with no likelihood of this changing in the future.

But we can never really know whether someone was having a bad week, or month, whether they sufficiently at ease with the responsible doctor to truly divulge the things that were causing them to wish to die.  A little like a death sentence, where reprieve has on rare occasions taken place days before the walk to the chair, we will never know whether this person might have changed their minds had there been more available in their local palliative care services that exist to help them alleviate or reduce their suffering? How do we know that this seemingly intractable suffering would not improve with better spiritual care, or more advances in analgesic intervention, or better social support and 24-hour care at home? Whether their perspective would have changed following engagement with empowered and compassionate staff who are able to bear witness to their suffering?  

The Bill proposes a time period of 14 days to ensure that any changes of mind are fully catered for.  I have known patients where 4 months of therapy have led to their being able to take new perspectives on life, to find joy again, to recreate meaning in their remaining time.  But of course not every patient warrants referral for psychological input, or specialist palliative care.  In an under-resourced and increasingly fragmented health service, the truth is we will never know whether someone could have made it better.

The main argument for this change in law relates to patient choice; a powerful rhetorical tool in today’s consumer-led health service.  Patient choice is the motivating force behind such positive developments in end-of-life care as advance decisions to refuse treatment, and in some ways to permit assisted dying could be seen as the logical next development here.  I have never understood why people who are ventilated go to Dignitas – it remains legal to withdraw life-prolonging treatment if the person has the capacity to express this, and it is considered to be medically justifiable.  I have written elsewhere about a patient with MND who achieved death at home at the time of his choice as a result of this decision.  This was not assisted dying, this was a patient-led withdrawal of active treatment.  

Patient choice is fashionable, but the current reality is that patients are not always able to die in their place of choice, or even have access to the services that would improve their quality of dying.  Until palliative care for all is a reality, and until patient choice becomes reality and not rhetoric, it is a dangerous change in direction to support assisted dying, particularly where this is being done in the name of patient choice. 

In the words of Camus, for suicide to be the only remaining option, the universe must have been stripped of it’s meaning,

“suddenly divested of illusions and lights, man feels an alien, a stranger. His exile is without remedy since he is deprived of the memory of a lost home or the hope of a promised land. This divorce between man and his life, the actor and his setting, is properly the feeling of absurdity. All healthy men having thought of their own death, it can be seen, without further explanation, that there is a direct connection between this feeling and the longing for death.”

 

The role of a compassionate health service lies in helping those who are dying, who are frightened and alone, to find meaning in their experience, comfort in their suffering, and companionship on their journey.

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