MODULE 4: Framing Law and Science

 


Learning outcomes

At the end of this module you will be able to 

  1.  explain how court cases about vegetative patients have been key to media and public/policy debates about patient autonomy and end-of-life decision-making in many countries around the world

  2. analyse how the media report court cases involving family conflict

  3. critique media coverage of scientific breakthroughs

4.1 Reporting landmark cases

 

This first unit on Module 4 invites you to think about how the media reported major landmark cases. Patients in permanent vegetative states have been at the heart of court cases and intense media coverage across many different countries particularly around what the media call “The Right to Die” and is more accurately known as “the right not to receive treatment”.

Modern medical technologies from the 1970s onwards allowed vegetative patients to be sustained indefinitely, leading doctors, families, or journalists to raise concerns about whether or not this was right, and to seek legal and ethical frameworks to help guide decisions about ongoing life-sustaining treatment. It also led to demands for changes in legislation to support people’s self-determination and permit them to opt out of life-sustaining interventions in advance if this was not something they would want for themselves in certain circumstances (via “Living wills” or “Advance Directives”).

Such efforts were met by counter-campaigns to preserve the right to life and the sanctity of human existence, particularly from some religious perspectives where withdrawal of treatment was seen as little better than murder. The issue also raised disability rights concerns focusing on the threat of treating some people’s lives as disposable and making quality of life judgments from an ableist perspective.

Journalists had to navigate ways of presenting opposing arguments, explaining proposed changes in the law, and assessing evidence about the implications of different legal positions. Some also took to campaigning themselves.

Select the names/places below to hear Jenny Kitzinger and leading clinicians and ethicists discuss (very briefly) some landmark cases which attracted international media attention. Each of these cases has helped shape the law in their respective countries.

In the example from India, note the role of the campaigning journalist Pinki Virani. In the other cases from other countries around the world note how family members have taken a learning role. Listen to a discussion with the parents themselves in the UK example.

Kansas City Star 26 Dec 2015

USA, Nancy Cruzan.

Injured 1983, final court judgment 1990. Commentary by Nancy Berlinger from The Hastings Centre.

 

 

The Guardian, 7 March 2011

INDIA, Aruna Shanbaug,

Injured 1973, major court judgment in 2011 (Died in.2015), Court case initiated by writer, journalist and human-rights activists: Pinki Virani

Commentary by expert examiner Consultant Neurologist, Roop Gursahani. Click on the sound bar to listen.

 

Observer, 8 Feb 2009

ITALY, Eluana Enlgaro.

Injured 1992, final court judgment allowing removal of feeding tube 2009.

Commentary by Paquita De Zulueta, GP ethicist

 

A dramatic case played out in Germany which ended up with a family member and lawyer being imprisoned for a while.

GERMANY, Erica Küllmer

Injured 2002, final court judgment allowing removal of feeding tube 2009.

Commentary by Claire Creutzfeldt, stroke neurologist

The landmark case in the UK was that of Tony Bland, injured in the Hillsborough football stadium disaster in 1989 and left in a vegetative state, finally allowed to die four years later when a court ruled it was permissible to withdraw his feeding tube. This was the case that established the principle, in the UK, that it was possible to withdraw a feeding tube allowing a patient in a vegetative state to die (without risking manslaughter charges).

 
UK, Tony Bland.

Injured 1989, final court judgment 1993

You first ‘met’ this family in an earlier unit when you were invited to look at a photograph released by the family at the time – reproduced again here.

In the two clips below you will hear Jenny in a recent  conversation with Tony Bland’s parents, Allan and Barbara, looking back at what they went through in 1989-1993.

 

They talk about about  trying to do right by their son and how they  (and their son’s doctor, Dr Howe) were thrown into a very public arena and had to face intense media interest (‘being chased’ by journalists and photographers). Click on the next audio

Listening to the Blands is a reminder that behind many of these major news stories was an ordinary family having to face extraordinary circumstances.

 

Each of the cases discussed above received international media attention. Each were crucial in creating a public debate that helped change the law (eg the Patient Self-Determination Act in the USA in 1990). The media played a key ‘agenda-setting’ role.

Landmark court cases, then, are one context in which vegetative or minimally conscious states attract media attention. In some ways such attention is informative: well-grounded by, for example expert evidence and written judgments, with opportunities to engage in-depth with extensive legal and ethical arguments often involving not just one, but a series of hearings as the case worked its way through to the highest courts in the land. There were also extensive challenges for journalists given the information (or misinformation) presented from competing sides. Problems highlighted by clinicians looking at the media reporting include sensationalism, misrepresentation of diagnosis, highlighting patients’ reflex actions as if they were proof of consciousness and presenting exaggerated visions of recovery (Stirano et al 2009).

However, there are some excellent examples of good court reporting and all the landmark cases discussed above have been important in raising public awareness and prompting conversation about death and dying and the importance of planning ahead for loss of capacity to make one’s own medical decisions.


Activity 1 
  • Had you heard about any of these cases before learning about them here?
  • What role do you think the media  should play in major social debates and legal changes such as those outlined above?

Add any comments to the comments section below.

 

ACTIVITY 2, OPTIONAL, EXPLORATION FROM A DIFFERENT PERSPECTIVE

(Estimated time: 3 hrs)

The meaning of these landmarks cases and how the patients’ stories can be told can be very differently depending on who is selecting and editing the account. While the people interviewed above emphasise that these landmark cases are about patient autonomy and patient-centred care a very different presentation comes from organisations such as the “pro-life” LifeNews.Com, founded by Steven Ertelt who identifies  himself as “Christian, pro-life, Republican”. 

  • Search on LifeNews.Com using the term ‘vegetative’ and look at how the landmark cases discussed above are represented there.
  • Also have a look at how recoveries and misdiagnosis cases are reported, comparing this to the information discussed in the ‘Diagnosis’ section of course.
  • Finally look at the visual representation of patients. For example the use of video of a  patient (described as ‘vegetative’)  in the anti-abortion video: “Christi’s choice’:  “Meet Christi, whose life was changed forever on her 18th birthday because the ‘choice’ she made. A compelling story about the truth behind the claim that abortion is safe.”