Choosing in Life to Choose in Death: Why the Patient ought to have the Final Word about his Final Hour

by Dr. Nileema Conlon Vaswani in

Whether it's Holby City or Harry Potter, the theme of death pervades much of what we see and read. Last week, hordes of people queued for the new Harry Potter, many of whom were desperate to know which of the characters had died. Many people watch violent films and enjoy them, as indeed do those who watch Holby City or read Harry Potter. But all this is fiction and the stories are not real ones.

So ought our treatment of death and our attitude towards it differ morally when the stories in question are real ones even if they are portrayed through books and television, the very mediums that bring us stories that are not real? This week, ITV has announced its decision to screen a documentary in August that captures the life and death of an Alzheimer's patient.

Eight years ago, Malcolm and Barbara Pointon allowed Malcolm's struggle with Alzheimer's disease to be filmed and aired on ITV. The programme about them titled "Malcolm and Barbara: A Love Story" focused on his experience with the disease and his wife's role as his carer. More recently, two years ago, the filmmaker was invited back into their home to film them cope with a more advanced stage of Alzheimer's disease. As Malcolm was about to die, Barbara asked that his final moments and his actual passing away be filmed. She is also keen that this part of the filming be aired in the new documentary scheduled for August.

So what is it about "real" death, as opposed to death that pertains to fiction or fantasy, that makes us so squeamish? If we didn't know that this documentary was based on real people, we would find it hard to separate the fact from the fiction. We might well believe that the programme was a story about two fictional characters named Malcolm and Barbara, rather than a documentary about two real people of the same names.

Birth and death are two events that are common to all of our lives and yet there is something about watching "real death" as opposed to fictional death that makes us morally uncomfortable. Perhaps the moral distance that one can maintain between oneself and a fictional death enables us to enjoy the films and books that deal with this theme but when we read about or view real death, the moral distance between us and the event lessens. Whatever the reasons for our moral discomfort, we do have the option of what to read or watch regardless of whether it is fact or fiction.

By airing the documentary, ITV is not offending the moral sensitivities of the viewing public because the public can choose whether or not to view the programme. The more pressing moral question is whether there are moral obligations towards Malcolm Pointon that are not being upheld by allowing the documentary to be aired.

The Pointons consented to the filming of Malcolm's illness and their experience of coping with it. This much is clear and in any case, the filming of his illness per se is not what is morally controversial. Whether his death ought to have been filmed, much less aired, is difficult to determine. Of course, Malcolm had a right to privacy, as indeed we all do, not only in our moment of death but also in various other spheres of our lives. Similarly, he had a right to dignity and the filming of one's death could be a violation of the individual's dignity.

The critical question is not whether the filming and airing of this programme respects his privacy or dignity but whether it honours his wishes. It is unlikely that his wife or anyone else would have been able to seek consent to have his death filmed in the moments before he died. It is, however, possible that Barbara and Malcolm had discussed this possibility in the months leading up to his death and that he was comfortable with the idea. It is also possible that this scenario was not discussed between the couple but that Barbara Pointon believed that, as his wife, she knew that her invitation to the filmmaker to capture her husband's death on film was not inconsistent with what he might have wanted. In the absence of whether either of these possibilities holds true, it is difficult to comment on whether the filming of Malcolm Pointon's death was right or wrong. If his wife had his death filmed with the knowledge that she was doing something that her husband, had he had the option to choose, would not have chosen, then we could conclude that her actions were wrong. But it is possible, even probable, that her wishes for her husband are consistent with what his wishes for himself would have been and, for this reason, her actions do not raise further moral concern.

As a general rule, privacy and dignity of patients ought to be respected but in other medical contexts, these values are often overridden by patient consent. Consider a situation where a patient is asked whether a medical student can observe a procedure that the patient is about to undergo. In some cases, the patient may refuse to allow the medical student to be present because he wishes to preserve his dignity and privacy. In other cases, the patient may agree to the presence of the medical student because he is willing to compromise his own privacy and dignity or, perhaps, may not consider the presence of the medical student as an infringement of his privacy or dignity.

Sometimes people's medical and life experiences are to be kept private; at other times they are to be shared. These choices ought to be regulated by the individual. As long as the individual's wishes are respected, any of his experiences can be shared. As for those who are on the viewing end, their moral choices as to what to read or what to watch are well intact.

Follow-up Comment

Since this article was written, it has emerged that the film-maker, Paul Watson, filmed Malcolm Pointon's slipping into unconsciousness and not his death. The advanced publicity on the part of ITV had suggested that it was Mr. Pointon's death that was filmed and it was on this basis that the above article was written.

It is important to realise that many of the moral issues would remain the same, however. The questions of informed consent, as well as the issues surrounding privacy and dignity as discussed in the article above, apply to the filming of his slipping into unconsciousness as they would have had his death been filmed. Whether the filming was right or wrong depends on whether or not he consented to it or, as is more likely, whether Mrs. Pointon's invitation to the crew to film her husband's last conscious moments was consistent with his wishes.