Assisted Dying – an open letter to Esther Rantzen

31 May

The debate on Assisted Dying often divides people into starkly opposing positions. The reality, however, is far more nuanced. A prominent advocate for Assisted Dying is Dame Esther Rantzen, who shares personal experiences to explain her stance on this complex issue.

Dame Esther is a well know, much loved and highly respected public figure and her voice carries power; this is the lady I watched on television as I grew up and the inspiration behind wonderful campaigns such as Childline and, later in her career, Silver line. When Dame Ester talks, people listen. Dame Esther writes compelling arguments in favour of Assisted Dying from a place of very personal experience which includes her own life limiting illness and the death of her husband Desmond Wilcox.

In a recent article Dame Esther outlines her support for Assisted Dying. I read the article with respect and acknowledge that I am not walking in her shoes, the shoes I am walking in are those of an Advance Care Planning Advocate, Educator and Coach. I’m a Registered Nurse with an extensive career in Palliative and End of Life Care. My experience spans hospices, community settings, and acute hospitals, I have also cared for a family member at home until their death. Across all these settings, I have observed a universal lack of understanding about Advance Care Planning, our existing laws, and the systems in place to protect us.

My concern is that we may rush into legalizing Assisted Dying without first addressing opportunities to improve understanding and implement existing measures which can alleviate the fear of losing control over our end of life wishes.

In response to Dame Esther’s article, I aim to highlight some common fears and share practical steps we can take now to gain a sense of control over our end of life decisions.

Choice: “we are denied the right to choose to die if life has become too painful”

Dame Esther starts with choice and argues we are denied the ability to choose to die if life is too painful. I would like to reflect on the question of choice and comment on pain.

We can choose to die already by stopping treatment, something I explore in more detail in the following section. What we cannot do at the moment is call for another person to legally end our life – these are two very different things. Every vote that calls for a right to choose to die is more accurately called the right for another person to legally end a life. I accept that there are different laws that could be considered and different ways that Assisted Dying could be implemented and defer to an excellent resource by Alex Ruck[i] keen who explains these nuances far better than I can.

My point isn’t to say this is right or wrong but to understand the meaning rather than the emotion behind the statement.

And too painful? If we are as a country voting to end a life that is too painful then what exactly does pain mean? Too painful in terms of physical pain? Or psychological pain? I’m a palliative care nurse and we recognise the psychological, spiritual and social elements of pain. People can suffer overwhelming pain through mental health. Could there be a scenario when we end a life due to physical pain and creep towards ending a life because of mental pain?

Choice: What can we do now?

Regarding choice, too often choices are not set out clearly or explained – if we don’t know there is a choice then we are powerless. In my career I have seen time after time failure to explain choice, most frequently when working in an acute hospital. I have witnessed patients on a treadmill of treatment where important conversations and plans are left far too late.

What we can do is to have honest conversations from the outset of every illness. The approach by the Waiting Room Revolution Drs Sammy Winemaker and Hsien Seow encapsulate this approach in the seven keys for a better illness experience[ii].

Addressing physical pain usually requires straightforward, practical steps. While some people do experience pain at the end of life, most cases can be managed effectively if healthcare professionals are equipped with the necessary skills and knowledge. Basic anticipatory measures, such as providing alternative routes of administration for those who may lose the ability to swallow medication, must be standard practice.

Many cases of pain at the end of life result from missed opportunities for symptom anticipation or logistical issues, not from an inherent inability to manage pain. We must improve training and actions to prevent these situations from driving legislative changes based on avoidable suffering. Basic skills such as anticipating that a person may become unable to swallow medication and using appropriate alternatives for if and when that might happen must be embedded.

Too often people experience pain because anticipating symptoms has been missed, chemists are closed or charts not available. I worry about a law change brought about by people’s shocking experiences of pain that could be avoided.

Life prolonging: “when medicine extends life without quality of life so people are forced to suffer longer”

Dame Esther highlights the issue of life-prolonging treatment without quality of life and presents a picture of forced living and suffering. It’s a powerful argument. Taking the statement at face value it would be easy to turn this argument into a call for a law change, but, I have to wonder, how many people who argue for choice are aware of the choice that exists already? The statement presents a picture of forced medical treatment with the sole intent of prolonging life, but existing law already offers protection from unwanted medical treatment.

As adults with capacity, we can consent to or refuse treatment. However, many are unaware of this right or caught in a culture of toxic positivity and false hope, stopping treatment aimed at cure can be seen as giving up or a medical failure.

Life Prolonging: What can we do now?

We can refuse treatments that merely extend life without quality. Open, honest conversations from the start of an illness are essential. Understanding the natural progression of an illness and planning accordingly should be standard practice. Treatment decisions should align with What Matters Most to a person.

Additionally, establishing a Lasting Power of Attorney and an Advance Decision to Refuse Treatment (ADRT) can ensure that our wishes are respected even if we lose capacity. These tools are available under current law to prevent unwanted medical treatments.

If capacity has been lost, life prolonging treatments such as such as artificial hydration and nutrition can already be stopped, if deemed in the best interests of a person.[iii]

Cardio-pulmonary resuscitation: “When Wilcox died of a heart attack in 2000, doctors kept trying to save him when there really nothing they could do – and Rantzen wished she could have just held him instead”

My heart goes out to Dame Esther as she describes the death of her beloved husband Desmond Wilcox. CPR is effective in only a small percentage of cases, especially outside hospital settings or for individuals with chronic health conditions. In some situations, attempting CPR is not appropriate and can be more harmful than beneficial.

Cardio-pulmonary resuscitation: What can we do now?

Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR), is a treatment recommendation designed to protect people from unwanted or inappropriate treatment of CPR. It is a clinical decision; however, the law is clear that a person about whom the recommendation is made should be involved in discussions and aware of decisions.

There is no formal consent required with DNACPR decision making, but the discussions are a must. The conversations need to sensitively explore a person’s wishes and align treatment, including CPR, alongside their wishes and their individual health condition.

What we can do now is to have more conversations about CPR, to understand when it may help and when it is a brutal and futile treatment. We need to raise awareness that DNACPR applies to CPR decision making only and does not mean that we are giving up on a person or stopping other forms of care. We know we are not having these conversations well enough at the moment.[iv]

Ordinary Dying: “Opinion on Assisted Dying is shifting”

There is evidence that opinion on Assisted Dying is shifting, both in terms of public perception[v] and BMA’s shift from opposition to a neutral stance in 2021[vi]. Assisted Dying is hitting headlines and creating conversations. Alongside this we have evidence that the number of people that have Advance Care Planning in place is low, one recent study found just 4.8% of people admitted with an acute medical emergency had an available Advance Care Plan.[vii]

Running parallel to a lack of Advance Care Planning exists widespread misunderstanding about Ordinary Dying. Public knowledge is informed by unrealistic media representation rather than reality.

Ordinary Dying & Opinion on Assisted Dying: What can we do now?

When assessing public opinion there must be greater understanding of existing law and current practice; campaigns to raise awareness and encourage people to talk more openly and document wishes are urgently needed. It would be wonderful to see the annual Dying Matters Awareness Week[viii] included in very workplace, library and GP surgery.

The Advance Care Plan Day[ix], held for the first time in May 2024, highlighted what we can do now and encouraged action in the form of social media pledges.

Dr Kathryn Mannix, a retired palliative care consultant, advocates for greater public awareness of Ordinary Dying. Dr Mannix highlights the process of Ordinary Dying in the BBC Ideas video Dying is not as bad as you think[x]; I would love to see this in the curriculum of every healthcare professional and viewed by every mortal.

Closing thoughts

In the fiercely contested debates about Assisted Dying my worry is that we are missing an opportunity. I worry that we are missing an opportunity to talk about taking control of decisions about how we live and die now; we are failing to use the law as it currently stands.

Returning to Dame Esther’s key points, nobody should die in pain, have life prolonging treatment against their wishes or experience an unwanted or inappropriate CPR treatment. But it is within our gift and current law already to make these a reality.

These goals are achievable under current laws, but we need to raise awareness, encourage conversations about end-of-life choices and promote Advance Care Planning.

[i] https://www.mentalcapacitylawandpolicy.org.uk/assisted-dying-assisted-suicide-an-informer/

[ii] https://www.waitingroomrevolution.com/season1

[iii] https://www.bma.org.uk/media/1161/bma-clinically-assisted-nutrition-hydration-canh-full-guidance.pdf

[iv]https://www.ombudsman.org.uk/sites/default/files/End_of_life_care_improving_do_not_attempt_CPR_conversations_for_everyone.pdf

[v] https://yougov.co.uk/health/articles/27240-public-and-healthcare-workers-support-euthanasia

[vi] https://www.bma.org.uk/advice-and-support/ethics/end-of-life/physician-assisted-dying

[vii] https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(19)30240-8/fulltext

[viii] https://www.hospiceuk.org/our-campaigns/dying-matters

[ix] https://advancecareplanday.org/

[x] https://www.youtube.com/watch?v=CruBRZh8quc

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