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BMJ. 2007 August 11; 335(7614): 305.
PMCID: PMC1941894
Review of the Week

Rage against the dying of the light

Reviewed by Richard Huxtable, deputy director/senior lecturer, Centre for Ethics in Medicine, University of Bristol

Malcolm and Barbara: Love's Farewell. ITV 1, 8 August at 9 pm. Rating: ****.

A film about the last days of an Alzheimer's patient has undeservedly been mired in bad publicity about a “faked” TV death, finds Richard Huxtable

Although they are more familiar with subjecting other institutions—not least the NHS—to critical scrutiny, some broadcasters in the UK are currently at the unwelcome centre of national attention, amid allegations of unethical and deceptive practices. Such scrutiny is only proper. However, it is regrettable that the questions raised by this powerful and poignant documentary risk being obscured by reports that the film was falsely publicised as depicting the “passing away” of Malcolm Pointon, whose life with Alzheimer's it unflinchingly traces.

We are first introduced to Malcolm in 1995, three years after he, alongside his wife Barbara, first learnt that the “silent physical buzzing” in his head marked the early onset of Alzheimer's, at the age of 51. In this film, a sequel to his 1999 documentary Malcolm and Barbara: A Love Story, the filmmaker Paul Watson was granted permission by the couple to document Malcolm's illness, through to his death earlier this year.

For those with experience of caring for and witnessing the decline of a loved one or patient with Malcolm's condition, the course followed by the couple, their family, and friends may be uncomfortably familiar. As the film begins, Malcolm—formerly a composer, lecturer, and BBC broadcaster—appears physically well but, as his son Martin observes, he is increasingly drawn into his “own little world.” From losing his way on (previously familiar) journeys, to expressing frustration at himself and those around him, Malcolm gradually transforms from the “most gentle” man that Barbara married into one that is—sometimes literally—“knocking all the love I have for him out of me.”

It is Barbara's journey, as much as Malcolm's, that is at the heart of this film, and her compassion, patience, and candour, while occasionally shaken, remain as firm at the close of the film, 11 years on, as they were at the outset. Save for respite care—which is, Barbara says, neither as frequent nor as capably provided as she would wish—Barbara remains Malcolm's main carer throughout his illness. She finds her relationship with her spouse transformed into one that resembles that of a parent to a child, and her home transforms too, with her dining room becoming “a hospital ward for one.”

Throughout these changes, Barbara remains humane, articulate, and direct and it is obvious how committed she is to ensuring that her family's situation is documented: she declines Watson's offer that he turn off the camera when she weeps, and it is she who asks him, “Do you want to film the bitter end, Paul?” To his credit, Watson quickly seeks to know whether this is what Malcolm would have wanted; it is, says Barbara, since the filmmaker has become “almost like a friend of the family.”

Barbara intimates why a documentary like this is so important; it seems, to her, that it should help raise awareness of the difficulties faced by patients with dementia, a condition she dubs “the scourge of the century,” and their carers. Awarded an MBE for her work advising policymakers on how to care for people with Alzheimer's, Barbara does not shy away from asking difficult questions: “Where”, she asks, “is the money for our most vulnerable members of society?”

Watson's camera captures Barbara in close up, and the proximity of his relationship with the Pointon family is tangible. Monologues are edited together with footage that sometimes illustrates, and other times juxtaposes with, what is being said. Powerful examples of the latter can be witnessed in the scenes in which we see moments of serenity contrasted with an audio recording in which Malcolm tussles with Barbara as she tries to ready him for bed. The footage here is repeated more than once in the following minutes, but to largely worthwhile—if uncomfortable—effect, since it helps to convey how commonplace such behaviour can be among Alzheimer's patients.

As for Malcolm's final conscious moments, there appears nothing prurient or voyeuristic in these closing scenes. It is, it seems, not quite the “bitter end” that has dominated the headlines: certainly, the family members are shown gathered at Malcolm's bedside, and in the last footage we see of him, Malcolm's consciousness may be dwindling but he is breathing yet. Whether the broadcasting media ought to be entitled to show a person's demise is an ethical debate for elsewhere; a debate, indeed, that might just as equally have been initiated by a previous documentary by Watson, Rain in my Heart, in which Nigel, a patient with cirrhosis, died in his partner's arms (BMJ 2006;323:1127 doi: 10.1136/bmj.39041.457199.59). There are, of course, ethical and social questions to be asked here, but the real story that this documentary tells concerns not simply the final failings of Malcolm's body but also what Barbara refers to as the “little bit of Malcolm [that] has been dying for the last 15 years.” The questions raised about the care provided both to those with dementia and, in turn, to their carers should remain the primary focus, long after the credits, over which one of Malcolm's compositions is played, have rolled.

As for Malcolm's final conscious moments, there appears nothing prurient or voyeuristic in these closing scenes


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