Article
Assisted dying
Care
Comment
Politics
4 min read

Assisted dying is not a medical procedure; it is a social one

Another vote, and an age-related amendment, highlight the complex community of care.
Graffiti reads 'I miss me' with u crossed out under the 'mem'
Sidd Inban on Unsplash.

Scottish Parliament’s Assisted Dying bill will go to a stage one vote on Tuesday 13th May, with some amendments having been made in response to public and political consultation. This includes the age of eligibility, originally proposed as 16 years. In the new draft of the bill, those requesting assistance to die must be at least 18.  

MSPs have been given a free vote on this bill, which means they can follow their consciences. Clearly, amongst those who support it, there is a hope that raising the age threshold will calm the troubled consciences of some who are threatening to oppose. When asked if this age amendment was a response to weakening support, The Times reports that one “seasoned parliamentarian” (unnamed) agreed, and commented: 

“The age thing was always there to be traded, a tactical retreat.”  

The callousness of this language chills me. Whilst it is well known that politics is more of an art than a science, there are moments when our parliamentarians literally hold matters of life and death in their hands. How can someone speak of such matters as if they are bargaining chips or military manoeuvres? But my discomfort aside, there is a certain truth in what this unnamed strategist says.  

When Liam McArthur MSP was first proposed the bill, he already suggested that the age limit would be a point of debate, accepting that there were “persuasive” arguments for raising it to 18. Fortunately, McArthur’s language choices were more appropriate to the subject matter. “The rationale for opting for 16 was because of that being the age of capacity for making medical decisions,” he said, but at the same time he acknowledged that in other countries where similar assisted dying laws are already in operation, the age limit is typically 18.  

McArthur correctly observes that at 16 years old young people are considered legally competent to consent to medical procedures without needing the permission of a parent or guardian. But surely there is a difference, at a fundamental level, between consenting to a medical procedure that is designed to improve or extend one’s life and consenting to a medical procedure that will end it?  

Viewed philosophically, it would seem to me that Assisted Dying is actually not a medical procedure at all, but a social one. This claim is best illustrated by considering one of the key arguments given for protecting 16- and 17- year-olds from being allowed to make this decision, which is the risk of coercion. The adolescent brain is highly social; therefore, some argue, a young person might be particularly sensitive to the burden that their terminal illness is placing on loved ones. Or worse, socially motivated young people may be particularly vulnerable to pressure from exhausted care givers, applied subtly and behind closed doors.  

Whilst 16- and 17- year-olds are considered to have legal capacity, guidance for medical staff already indicates that under 18s should be strongly advised to seek parent or guardian advice before consenting to any decision that would have major consequences. Nothing gets more major than consenting to die, but sadly, some observe, we cannot be sure that a parent or guardian’s advice in that moment will be always in the young person’s best interests. All of this discussion implies that we know we are not asking young people to make just a medical decision that impacts their own body, but a social one that impacts multiple people in their wider networks.  

For me, this further raises the question of why 18 is even considered to be a suitable age threshold. If anything, the more ‘adult’ one gets, the more one realises one’s place in the world is part of a complex web of relationships with friends and family, in which one is not the centre. Typically, the more we grow up, the more we respect our parents, because we begin to learn that other people’s care of us has come at a cost to themselves. This is bound to affect how we feel about needing other people’s care in the case of disabling and degenerative illness. Could it even be argued that the risk of feeling socially pressured to end one’s life early actually increases with age? Indeed, there is as much concern about this bill leaving the elderly vulnerable to coercion as there is for young people, not to mention disabled adults. As MSP Pam Duncan-Glancey (a wheelchair-user) observes, “Many people with disabilities feel that they don’t get the right to live, never mind the right to die.” 

There is just a fundamental flawed logic to equating Assisted Dying with a medical procedure; one is about the mode of one’s existence in this world, but the other is about the very fact of it. The more we grow, the more we learn that we exist in communities – communities in which sometimes we are the care giver and sometimes we are the cared for. The legalisation of Assisted Dying will impact our communities in ways which cannot be undone, but none of that is accounted for if Assisted Dying is construed as nothing more than a medical choice.  

As our parliamentarians prepare to vote, I pray that they really will listen to their consciences. This is one of those moments when our elected leaders literally hold matters of life and death in their hands. Now is not the time for ‘tactical’ moves that might simply sweep the cared-for off of the table, like so many discarded bargaining chips. As MSPs consider making this very fundamental change to the way our communities in Scotland are constituted, they are not debating over the mode of the cared-for’s existence, they are debating their very right to it.   

Article
Care
Culture
Mental Health
Trauma
5 min read

Stillness is not always peace: how wellness and illness intertwine in silence

Stillness invites clinical insight—and a deeper kind of presence

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

A seated Celine Dion, leans forward, head to the side, holding a mic.
Celine Dion, stiff-person syndrome sufferer.
Celine Dion.

The Global Wellness Institute defines wellness as the active pursuit of activities, choices and lifestyles that lead to a state of holistic health. It includes rest and rejuvenation, through mindfulness, meditation and sleep. As a care home nurse, I am intrigued by the subject of stillness – for patient and nurse - in the pursuit of wellness, and as a sign of illness.  

There’s a lot of stillness in illness - from the dense paralysis that can follow stroke or spinal cord injury, to the subtle weakness or stiffness in an arm that might signal the onset of motor neurone disease. Over half of people with Parkinson’s experience ‘freezing’, feeling as if their feet are momentarily glued to the ground. Freezing is also a feature of stiff-person syndrome – the auto-immune neurological condition powerfully documented by Celine Dion in her film I Am. In so-called stone-man syndrome, muscle tissue is replaced by bone, an immobile ‘second skeleton’. 

The stillest still is seen in death itself. I’ve stood still with spouses and sons as their loved ones breathe their last. Alone, I’ve watched the hush between heartbeats until there exists only stillness beside sorrow. It’s a stillness like no other, when breath becomes still air, and the only movement is through a window opened to let air in, and souls out, in time-honoured nursing tradition. 

In memory of babies born still, a public education and awareness campaign has been launched in the US. “Stillness is an illness” calls for families and healthcare providers to take seriously altered foetal movement in pregnancy, which is reported by 50 per cent of mothers who experience stillbirth. Stillbirth is a tragedy insufficiently addressed in global agendas, policies, and funded programmes, according to the World Health Organization. Mothers in sub-Saharan Africa and Southern Asia are at highest risk, with nearly 1.5 million stillbirths in these regions in 2021. 

Sometimes stillness manifests in more muted ways. When dementia robs the recall of person, place and time, residents no longer lift their head in response to their name, nor appear at their chosen place at the breakfast table in the morning. Television presenter Fiona Phillips describes the late stages of dementia for her mother, when she “spent whole chunks of time just sitting and staring ahead, only able to give out a series of sounds.” In care home nursing, I have brought stillness to an agitated mind. Therapeutic touch has relieved tension; creative activities have reduced restless pacing up and down. Music, movement, and medication can also calm a troubled mind. 

In the further pursuit of patient wellness, the nurse may need to be still. The “CAREFUL” observation tool has been developed in nursing homes, in which the nurse sits still and discreetly watches a resident for a period of time, assessing their activities and interactions, working out what brings wellbeing, or ill-being, for that individual; residents in this case being our best teachers. Other times in dementia care, the nurse is still as they patiently wait for a resident to explore, enquiring into self-made mysteries solvable only by themselves, examining everything from door handles to another resident’s buttons; or to slowly finish a meal, their swallow also affected by the disease.  

Punctuating any frantic nursing shift are other moments of necessary stillness as the nurse performs intricate procedures, carefully inserting catheters, delicately taking blood from fragile veins, or applying prolonged pressure to stem bleeding caused by a catheter during cardiac stenting. In the operating theatre, the scrub nurse stands still awaiting a surgeon’s call; the “honor walk” or walk of respect is a ceremonial procession in which healthcare staff line the corridor, in silent tribute, as a brain-dead patient is taken to theatre for organ donation. 

There’s a different stillness sought in nursing, and elsewhere, which runs very deep. Described by missionary and author Elisabeth Elliot as a “perfect stillness…a great gift”, it is, in her words, “not superficial, a mere absence of fidgeting or talking.  It is a deliberate and quiet attentiveness—receptive, alert, ready”. It’s an expectant stillness in which we “put ourselves firmly and determinedly in God’s presence, saying ‘I’m here, Lord.  I’m listening’.” Writing for the Christian Medical Fellowship, nurse Sherin describes such a seeking during a stressful shift. “Overwhelmed, I stepped away to find a quiet place. I ended up in a washroom. It wasn’t ideal, but there I cried out to God, asking for courage, peace, patience, and above all, love for that patient.” And her prayer was answered. “That, to me, was the quiet, powerful presence of Christ,” she writes. 

Her role model was Jesus himself who often stepped away to be still, to seek spiritual sustenance. Just before he fed the five thousand, Jesus said to his tired and hungry disciples, “Come with me by yourselves to a quiet place and get some rest.” When grieving the execution of John the Baptist, he withdrew by boat privately to a solitary place; and in the hours before his arrest, Jesus withdrew about a stone’s throw from his disciples, knelt down and prayed. An angel from heaven appeared to him, and strengthened him. We too are invited, in the book of Psalms, to “Be still and know God” when hard pressed and weary. Here, the words “be still” derive from the Hebrew rapha which means “to be weak, to let go, to release”, or simply to surrender. It’s a theme repeated in many of the great Christian hymns, hinting at an expectant, sustaining stillness, invoking God’s promise of His presence in that stillness. Little-known hymnwriter Katharina von Schlegel, writing in the eighteenth century, captures it perfectly. 

Be still, my soul! the Lord is on your side; 
Bear patiently the cross of grief or pain; 
Leave to your God to order and provide; 
In ev'ry change he faithful will remain. 
Be still, my soul! your best, your heav’nly friend 
Thru' thorny ways leads to a joyful end. 

I’ve sought this stillness, and it’s brought me wellness. It’s the reason why, despite some difficult days, I am a nurse. Still. 

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